The Path to Person-Centered Elder Care
Improving Quality and Sustainability

Radboud Honours Academy – Reflections on Science
Honours Programme for Master’s students
Think Tank The Future of Healthcare 2013-2014
Nicole Adams Radboud University Nijmegen
Laura Bruce Pennsylvania State University
Brennan Cornell Pennsylvania State University
Mathijs Mabesoone Radboud University Nijmegen
Caitlin MacNicol Pennsylvania State University
Paige Pokorney Pennsylvania State University
Anouk Putker Radboud University Nijmegen
Kathleen Quinn Pennsylvania State University
Stefan Remmers Radboud University Nijmegen


We would like to thank Prof. Dr. Myrra Vernooij-Dassen, Dr. Mark Sciegaj and Henk Willems for their help, advice
and support during this project. This work could not have been realized without their expertise, guidance and continuous
feedback throughout the year. We would like to thank Noortje ter Berg MA from the Radboud Honours Academy, Dr.
Christian Brady and Dr. Richard Stoller from the Schreyer Honors College for their hospitality during the working weeks
that were spent under their supervision and their efforts in organizing this program. In addition, we would like to thank
Prof. Dr. Marcel Olde Rikkert, Lenie van den Berg, Han van den Boogaard, Dr. Henk Schers, Prof. Dr. Jan Kremer, Prof.
Dr. Gert P. Westert, Prof. Dr. Glenn Gerhard, Prof. Dr. Michael Flanagan and Prof. Dr. Harriet Black Nembhard for their
contribution to this project.

Think Tank the Future of Healthcare 2013-2014

Radboud University Nijmegen Pennsylvania State University
Nicole Adams Law Laura Bruce Biology
Mathijs Mabesoone Chemistry Brennan Cornell Biomedical Engineering
Anouk Putker Medicine Caitlin MacNicol Nursing
Stefan Remmers Biomedical Sciences Paige Pokorney Biobehavioral Health
Kathleen Quinn Economics


Preface ……………………………………………………………………………………………………………..... p.7
Patient-Centered Coordinated Care: a Review of Healthcare Coordination in the USA and the Netherlands……… p.9
The Role of Health Information Technology in achieving Person-Centered Care………………………………….. p.19
Medical Decision Making and (In)competent Elders: Respecting the Autonomy and Dignity………………..…… p.27
Personalized Medicine in Elder Care……………………………………………………………………………….... p.35


In September 2013 the think tank The Future of Healthcare kicked off their project with a working week at the
Radboud University Nijmegen, the Netherlands. This was for all of them the first time they met, and provided them with
the opportunity to get to know each other and delve deeper into the project at hand: the future of healthcare for the elder
population. Much was accomplished during that week, and once the Americans had returned home, each student had
established a topic within their own field that would benefit the overall topic to investigate. This resulted in a selection of
nine individual papers, that were used as the building blocks for the next stage of the project.
Using the individual papers, the think tank created groups of two or three students each with comparable research
interests. These groups wrote a group paper combining these interests, focusing on how the care for elderly could be
improved from that perspective.
In January 2014 the Dutch students visited Pennsylvania State University, USA for the second working week. In this
week the students discussed their findings and conclusions from the past half year, and formulated an outline for the final
product: a policy paper aimed at improving the quality and sustainability of elder care.
Much was written in the preceding papers that would not be used in the final paper, but was interesting and valuable
nonetheless. For that reason, this compilation was created. The four group papers are presented in this document to
provide a more in-depth look at the topics investigated by the think tank.



Patient-Centered Coordinated Care: a Review of
Healthcare Coordination in the USA and the Netherlands
Patient as Partner

Anouk (A. E.) Putker - Radboud University Nijmegen
Caitlin E. MacNicol - Pennsylvania State University
Paige E. Pokorney - Pennsylvania State University

Introduction: The growing elder population is a concern for healthcare cost, quality, and access. Coordination of
care is an innovative concept that has the potential to benefit the elder population greatly. Utilizing Wagner’s Chronic
Care Model as a framework, the current literature on coordinated care for the elder population is reviewed to assess its
current utilization in The Netherlands and United States.
Methods: A review of literature was conducted by using online search databases including PubMed, Google Scholar,
and CINAHL. Search terms included “patient-centered care,” “chronic care model,” “patient-centered medical homes,”
“adherence and patient-centered care,” “cost and patient-centered care,” “community-based health promotion programs
for the elderly”, “healthcare coordination”, “coordinated care”, “electronic medical records”, “patient focused care”,
“general practice”, “general practitioners”, “IADLs”, and “Dutch health care system.”
Results: Wagner’s Chronic Care Model’s emphasis on coordinated care is a useful tool for improving the healthcare
of the elder population who suffer greatly from chronic illness and multimorbidities that make care management difficult.
In the United States, coordinated care is not utilized by all healthcare teams; however, Patient-Centered Medical Homes
are innovative models for an increase in coordination of care. In The Netherlands, general practitioners and specially
trained case managers are usually the coordinators of care. Coordinated care is an important cornerstone of patient-
centered care, which has been shown to improve the cost and quality of care among a variety of populations.
Conclusions: Coordination of care via the utilization of Wagner’s Chronic Care Model is a useful tool for improving
the healthcare of the elder population in both The Netherlands and United States. Future research should focus on policy
and implementation strategies for increasing coordinated care for the elder population.


Lowering costs and improving outcomes are two cornerstones of improving the healthcare industry. Of particular
interest is the elder population of developed nations. Representing approximately 13.3% of the U.S. population in 2011,
those 65+ are expected to comprise 21% of the country by 20401. The Dutch 65+ population is expected to rise to 4.7
million, representing 25% of the Dutch population by 20412. Compounding the impending increase in demand for
services, providing healthcare to elders is expensive. One study estimated that delirium (which accounts for more than
48% of all elder hospital care) costs the U.S. healthcare system between $38 to $152 billion dollars each year3. The U.S.
average for the cost of a month’s stay in a semi-private room at a nursing home is $6,235 dollars4. The costs of a
month’s stay in a private room at a nursing home ranges from 156 to 2246 euro (113-1684 $USD) in The Netherlands5.
Differences between these two countries can be addressed in Tables 1 and 2. Clearly, there is a need to produce cost-
effective, quality care for elders in order to manage the already rising costs of healthcare and improve health outcomes in
this growing population. One possible solution is coordinated care. Coordinated care refers to:

The deliberate organization of patient care activities between two or more participants (including the patient)
involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the
marshalling of personnel and other resources needed to carry out all required patient care activities, and is often
managed by the exchanges of information among participants responsible for different aspects of care

Coordinated care aims to provide care that is timely, safe, effective, patient-centered, efficient, and equitable
. One
integral concept to coordinated care is patient-centered referrals that respond to the patient and family’s needs and
desires. Patient-centered care (PCC) can be defined as care that:

Informs and involves patients in medical decision-making and self-management; coordinates and integrates medical
care; provides physical comfort and emotional support; and understands the patients’ concept of illness and their
cultural beliefs; and understands and applies the principles of disease prevention and behavioral change appropriate
to diverse populations

Coordinated care that includes a focus on PCC can offer a unique edge to elder care. Elders are more likely to suffer
from chronic illnesses. Based on data collected by general practitioners (GPs), The Netherlands has 4.5 million
chronically ill individuals, and nearly one third suffers from more than one chronic disease (1.3 million people)
. The
biggest contributors are diabetes, coronary heart disease, hypertension, stroke, dementia, depression, COPD, and
. This phenomenon of compounding chronic illness is called “multimorbidity” and is common throughout the
developed world where chronic illness thrives. Multimorbidity is relatively rare at younger ages, but with aging,
multimorbidity is seen in over half of the population
. The US National Council on Aging estimates 91% of older adults
in the US have at least one chronic condition with 73% at least having two
. Chronic diseases are responsible for 7 out
of every 10 deaths in the US, killing more than 1.7 million Americans every year
. People with chronic conditions are
the most frequent users of healthcare in the US as they account for 81% of hospital admissions; 91% of all prescriptions
filled; and 76% of all physician visits
. Long-term chronic care is of critical concern for individuals, families, physicians,
and society as a whole.
A frequently cited framework for chronic care management is Wagner’s Chronic Care Model (CCM). Illustrated in
Figure 1, the model emphasizes a highly integrated and coordinated system among the patient, provider, and
. There are six main elements to Wagner’s model: the health system, delivery system design, decision
support, clinical information systems, self-management support, and the community
. The health system supports
coordinated, evidence-based practice via a delivery system that distributes tasks across the team through culturally
sensitive care, case management, and follow-up by the care team
. The patient is supported by the provider to make
evidence-based decisions through an integration of both primary and specialist care. A focus on technology is also
integral to the success of the CCM. Clinical information systems such as patient portals and electronic health records can
provide timely communication and reminders for the patient with regards to their care plan—a necessary aspect of
effective chronic care management. Overreaching all of these concepts is the community, which supports the patient and
healthcare system in order to enhance care management, develop interventions filling gaps in care, and advocate for
improved patient care. Finally, the CCM emphasizes the role of PCC in chronic care management. Self-management

support is not telling the patient what to do, but utilizes strategies such as goal setting, empowerment, follow-up, and
both internal and community resources for ongoing support. According to Wagner’s model, chronic care management is
unachievable without PCC

Figure 1: Wagner's Chronic Care Model (CCM)

Aim of this study
Utilizing Wagner’s CCM, the current literature on coordinated care and PCC for the elder population is reviewed.
Integral to our research are terms such as PCC, general practitioner (GP), and primary care physician (PCP). Clear
differences in the definitions of these terms exist between the U.S. and the Netherlands healthcare systems. These
differences can be referenced in Table 2. In order to understand the current research around coordinated care and PCC,
Wagner’s CCM is used for a framework to discuss the role of the patient, provider, and community.

Table 1: Core aspects of The Netherlands and US Healthcare Systems

United States The Netherlands
Utilization of
Primary Care
Weak use of Primary Care Physicians and
minimal gate-keeping
55% of doctor visits are to PCPs 17
Strong use of General Practitioners throughout
lifetime and with strong gate-keeping functions
A complex system of private insurance
companies and government insurance for the
poor (Medicaid) and those over the age of 65
(Medicare). Most costs are not standardized
and vary greatly among insurance providers.
General practitioners are paid by a complex
system of capitation and fee-for-service. The
costs are paid by the government and insurance
companies. Every citizen is obliged to have basic
healthcare insurance.
Coordination of
Use of accredited PCMHs to integrate medical
care throughout the lifetime and between
Care is coordinated by GPs and case managers.
Every Dutch citizen is required to have a GP in
order to organize and coordinate
(multidisciplinary) care.
Use of
PCMHs and an increasing number of
healthcare offices use electronic medical
records and patient portals
98% of all General Practices use electronic
medical records18


Table 2: Definitions of relevant terms
Term Definition
The deliberate organization of patient care activities between two or more participants (including the
patient) involved in a patient’s care to facilitate the appropriate delivery of healthcare services.
Organizing care involves the marshalling of personnel and other resources needed to carry out all
required patient care activities, and is often managed by the exchanges of information among
participants responsible for different aspects of care6.

centered care
Informs and involves patients in medical decision-making and self-management; coordinates and
integrates medical care; provides physical comfort and emotional support; and understands the
patients’ concept of illness and their cultural beliefs; and understands and applies the principles of
disease prevention and behavioral change appropriate to diverse populations8.
PCP (United
PCP stands for Primary Care Provider. A PCP may be a physician, nurse practitioner, or physician’s
assistant. In the United States, a PCP may work in Family Practice where they work with all ages, or
in Internal Medicine, which is strictly adults, or in Pediatrics, which is strictly children. Some
consider Gynecologists to also be Primary Care Providers who specialize in women’s health.
The Netherlands has General Practitioners, who provide primary care services and act as a gatekeeper
to specialties. There are no sub-specialties within General Practice. The term “GP” is used throughout
the paper to standardize terminology.

In this review, we utilized online search databases including PubMed, Google Scholar, and CINAHL. Search terms
included “patient-centered care,” “chronic care model,” “patient-centered medical homes,” “adherence and patient-
centered care,” “cost and patient-centered care,” “community-based health promotion programs for the elderly”,
“healthcare coordination”, “coordinated care”, “electronic medical records”, “patient focused care”, “general practice”,
“general practitioners”, “IADLs”, and “Dutch health care system.” See Table 1 and Table 2 for relevant definitions of
terms and concepts within both the U.S. and The Netherlands.

PCC and the Patient
The CCM illustrates high-quality chronic care via productive patient-physician interactions. These exchanges are
much more likely to be positive if the patient is informed, empowered, and active, which are all key concepts to PCC
For elders, the patient-provider interaction may pose difficulties, specifically with regard to treatment adherence. Not
only are elders more susceptible to the negative outcomes of non-adherence (increased hospitalizations, mortality, and
worsening of disease and symptoms), but they are also more likely to diverge from physician recommendation
. Elders
are often on multiple drug and behavior therapies for multimorbidities making prescription management difficult.
Coupled with increasing cognitive impairment and a loss of independence, this only amplifies the likelihood of patient
Studies show a positive correlation between increased PCC and adherence to physician
. Therefore PCC can be
used as a specific strategy for improved elder care via the CCM, as informed and empowered patients are more able to
navigate the system and partake in productive patient-physician interactions. PCC has been shown to decrease costs and
improve outcomes of care
26, 27
. Many studies have provided evidence that proves that PCC can be cost-efficient. A recent
study demonstrating the benefits of PCC examined two comparable hospital units (size, population, policies and
procedures were comparable). One provided standard given care; the other provided PCC. The hospital unit utilizing
PCC was associated with shorter length of stays and lower costs per case
. PCC has also been associated with fewer
diagnostic tests
. When physicians make medical decisions together with a patient, patients feel more confident with the
prescribed treatment or policy, and unnecessary second opinions can be reduced by 68%, thereby creating timely and
efficient provision of care
28, 29
. Together, this evidence illustrates the benefits PCC can have on chronic illness and elder
care in accordance with Wagner’s CCM.


PCC and the Physician
Physicians play a critical role in elders’ chronic care. They are integral to the healthcare team that is emphasized in
Wagner’s model. In The Netherlands, every person is obligated to have a GP who fulfills the role of gatekeeper to all
medical services. With emergency care as the only exception, patients can only consult secondary care providers
(hospital and medical specialists) when a referral has been made by a GP. In this way, GPs play a critical role in the
coordination of care. The most common reasons for visiting the ER without GP referral are: “I need emergent care”
(48%), “I need extra investigations” (22%), and “I am worried” (14%)
. Because the GP has extensive medical
knowledge and often long-term relationships with their patients, he or she is able to judge whether someone needs
specialized care. This is based on the patient’s medical history, presentation of the set of complaints, and possibly
alarming symptoms. There are many more points of contact between the GP and patient in The Netherlands, and there is
more of an incentive for patient-physician interaction (via the necessity for referrals). These are key concepts for both
PCC and Wagner’s CCM.
In 1998, European countries with gatekeeping systems spent less on healthcare as a percentage of their gross national
product than those that allowed direct access to specialists (7.8% vs. 8.6%)
. Although gatekeeping is associated with a
wider range of conditions managed by GPs, it has not been linked to other changes in the diagnostic or management
styles of GPs or PCPs
or their coordination of referral care
33, 34
. However, the continuation and coordination of care is
not always headed by the GP. Case managers primarily coordinate a patient’s care among community resources, various
healthcare facilities, and physicians. When compared to seven other developed nations (including the U.S., United
Kingdom, Germany, France, Australia, and Canada), The Netherlands performed first or second in all measures of access
and patient-reported errors, duplications, or views of wasteful care; however, The Netherlands also reported high rates of
hospital and ER readmission indicating the need for better coordination through the transitions between care facilities
The US has experienced a recent push for more coordinated care highlighted by the emergence of Patient-Centered
Medical Homes (PCMHs). PCMHs are not physical places, but a methodology of organizing medical care in the best
possible way for the patient. A PCMH is defined as a model of care that is comprehensive, patient-centered, and
coordinated that offers accessible, high quality, and safe services
. The goal of PCMHs is to coordinate care for the
patient starting at birth and through to the end of life. Integral to the PCMH’s success is a reliance on technological
advancements such as electronic medical records, patient portals, and reimbursement reform
. A facility cannot simply
label itself as a PCMH. A strict accreditation process involves the fulfillment of detailed guidelines in care quality,
patient safety, care-coordination, and more. Only after proof of concordance with these guidelines will the National
Committee for Quality Assurance (NCQA) accredit a facility as a qualified PCMH
. This organization of care can
enhance the healthcare provider team of Wagner’s model through a cohesive group providing coordinated care.
Many parallels can be drawn to Wagner’s model including a focus on patient-provider interaction, evidence-based
practice, reliance on innovative technology, and care coordination. A copious amount of research has shown improved
health outcomes and decreased cost when PCMH has been applied
. This evidence strengthens the argument for
applying Wagner’s CCM for elder care. The patient focus and coordination of care exemplified in the PCMH allows the
concerns and desires of the patient to be heard and addressed quickly and effectively. Because the medical providers are
in one facility working as a team, the patient does not have to travel and re-explain his medical history. The medical team
can better support the patient and his medical needs, empowering and increasing his self-efficacy, and therefore
improving health outcomes.
However, the PCMH model is not without flaws. The model relies heavily on technology, which can often come with
issues of user-friendliness, cost, and implementation
. In addition, the model requires physicians to break many cultural
norms of physician practice such as division between specialties, working only on weekdays, and a lack of transparency
with patient. For example, with the implementation of patient portals, for the first time patients will be able to see the
physician’s clinical notes raising the demands of note-taking and attention to patient needs. The willingness of physicians
to implement care coordination will be tested. Finally, it will take a lot of policy changes in order to create a
reimbursement system that rewards physicians for quality, coordinated, PCC rather than the quantity of services
provided. The Patient Protection Affordable Care Act (ACA) has made strides toward that end by offering states the
ability to increase reimbursement to Medicaid-designated health homes, which are similar to PCMHs but integrate both
physical and behavioral healthcare, target high-risk populations, and require coordination beyond medical services to the
44, 45
. Reinforcing the barriers to implementation of the PCMH, a study by Ormond et al. found that the major
challenges to implementing the Medicaid health home were the need for culture change, improved communication within
and across facilities, better methods in data collection, reimbursement reform, and increased participation across the

. Nevertheless, if the barriers can be overcome, the PCMH and Medicaid health home models have the potential
to foster coordinated PCC throughout the healthcare industry in concordance with Wagner’s model.

PCC and the Community
Coordination between the patient, healthcare team, and community can both enhance care and prevent duplication of
. Health promotion programs are based in the community and can provide services such as exercise programs,
chronic disease management support groups, health education, and disease screening. Such programs have been shown to
have a significant effect on adherence and health indicators when compared to traditional care consisting of periodic
physician visits thereby enhancing overall patient care
46, 47
Specifically, health promotion programs can greatly benefit difficult-to-manage multimorbidities of the elder
population. One support group program aimed at elders with multiple chronic diseases halved the number of depressed
and physically inactive participants and decreased the number at nutritional risk by 20%
. Holistic health promotion
programs combine these services for a significant synergistic effect resulting in increased function and quality of life
49, 50

and a resultant decrease in healthcare utilization and its associated costs
46, 51, 52
However, holistic community-based health promotion programs are not currently widespread in the United States and
The Netherlands, thereby hindering the coordination of care. What programs that do exist are usually focused on one
element of health promotion, typically exercise, and are often grouped in cities
53, 54
. America’s Program of All-Inclusive
Care, or PACE, is administered under Medicare and includes any independent health promotion program aimed at elders.
Very few of the programs under PACE address more than one element of health promotion. In The Netherlands, the main
national health promotion program for elders is More Exercise for Seniors, or MBvO, which also does not offer
multifactorial programs. One of the main underlying problems with the current underutilization of these programs is the
lack of awareness in the medical community of their existence or effectiveness.
Progress has been made toward integrating health promotion into the places already used by elders, such as utilizing
pharmacists to educate elders on their medication regimen to minimize negative side effects and maximize effectiveness.
However, elders are still at high risk for complications from polypharmacy due to medication interactions and
complexity of instructions for taking medication. One community program used an interdisciplinary team to assess the
regimens of elders taking five or more medications and then provide education about reducing unnecessary medications.
Over a six-week period, compared to the control, participants decreased their medication number by an average of 1.5
and saved an average of $26.92 per month
The ACA has provisions to support and expand community health centers across the United States. A health center is
defined as being in an underserved area, governed by a board of which at least half are patients, and which provides
holistic primary care and support services, and adjusts fees by income level
. In a five-year plan beginning in 2011, $11
billion is slated to go toward improving current programs and building new health centers
Utilizing community-based health promotion programs and integrating them into the delivery of primary care can
result in an improvement in function, independence, and quality of life
46-48, 58-61
. Compounding these benefits, community
involvement can result in decreased healthcare utilization
46, 51, 52
, although debate still exists about their cost-
52, 62-64
. This evidence shows the benefit of community coordination in the management and treatment of
chronic care in concordance with Wagner’s CCM.

Chronic care management is critical to the health of the elder population. It is estimated that 91% of the older adults
in the US suffer from at least one chronic disease and 73% from at least two
. The Netherlands is facing the same burden
of chronic disease with nearly 4.5 million chronically ill individuals
. Developed nations must face and find solutions to
the burden that the rapidly growing elder population will have on costs, quality, and access to healthcare services. Critical
to the management of elder care is the patient, provider, and community and the coordination of services between all
parties. Wagner’s CCM illustrates just this through the coordination of care in order to produce productive patient-
physician interactions and care that extends beyond the office and into the community
15, 19
The patient within Wagner’s CCM is both empowered and informed. Critical to this principal is PCC. PCC allows for
the patient to be an active participant in their care provision, management, and coordination
. PCC improves the
likelihood of adherence to physician recommendation and decreases overall healthcare costs
. This is of specific
concern for the elder population; therefore, PCC is imperative for an informed patient with the resources to engage in
coordinated care.

A physician is responsible for the care of their patients. Without care coordination by the provider team, a patient’s
care management can be compromised
. In this way, GPs in The Netherlands are the gatekeepers of care with case
managers working towards the coordination of the referred care from the GP. In the US, innovative PCMHs are in the
process of better coordinating care while also implementing PCC. Finally, the last piece of Wagner’s CCM is the
community. Community health promotion programs for the elderly are integral to the continuation of care from the
doctor’s office to the home. Moreover, they are integral to the improvement in function, independence, and quality of life
of elders
46-48, 58-61
Currently, there are some supports for coordinated care in both the US and Netherlands. In the US, the ACA offers
states the ability to increase reimbursement to Medicaid-designated health homes, which are similar to PCMHs but with
the addition of public health
. Like PCMHs, health homes focus on coordination of care. In The Netherlands, the role of
the GP continues to emphasize coordinated care through strong gatekeeping strategies and long-term relationships with
patients. However, evidence shows the need for more care coordination in order to improve the quality of care
. Finally,
the ACA also has provisions to support and expand community health centers across the US, which provide holistic
primary care and support services, and adjust fees by income level
. By expanding the role of the community, the
ACA’s new policies will improve the continuation and coordination of care.
However, there are barriers to the coordination of care that must be addressed. Critical to coordinated care is the
implementation of electronic medical records
. Unfortunately, with the introduction of said technology, issues of user-
friendliness, cost, and resistance to use arise
. In addition, the increasing focus on healthcare teams and community
involvement may create resistance from some physicians who feel their practice is being threatened or scrutinized,
specifically in the US where an individualistic culture thrives. A final barrier is the investment of time. Coordinated care
requires providers to invest more time in patient care management, and time is a valued commodity. Nevertheless,
research shows the benefits to coordinated care, and in a global industry with an impending crisis something must be
done to improve the outlook for the healthcare of elders.
Using Wagner’s CCM as a framework, we have outlined the major themes in healthcare coordination and PCC in
today’s literature. From this foundation of information, future research should focus on finding cost-effective and
innovative solutions to better coordinate care. Implementations of gatekeeping strategies, case management, PCMHs, and
community health programs all have preliminary evidence supporting their benefit in the provision of coordinated care
for future health promotion programming. Coordinated and patient-centered care has the potential to greatly improve the
healthcare of nations and help lessen the burden that the growing elder population will put on healthcare systems.


1. A Profile of Older Americans. 2012.
2. Vergrijzing: Wat zijn de belangrijkste verwachtingen voor de toekomst? : Nationaal Kompas Volksgezondheid 2013. Available from:
3. Leslie DL, Marcantonio ER, Zhang Y, Leo-Summers L, Inouye SK. One-year health care costs associated with delirium in the elderly population.
Archives of internal medicine. 2008;168(1):27-32.
4. Costs of Care 2013. Available from: http://longtermcare.gov/costs-how-to-pay/costs-of-care/.
5. Betaal ik een eigen bijdrage als ik in een AWBZ-instelling verblijf? : Rijksoverheid; 2013. Available from:
6. McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, Kraft SA, et al. Closing the Quality Gap: A Critical Analysis of Quality Improvement
Strategies. Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies (Vol 7: Care Coordination). AHRQ Technical
Reviews. Rockville (MD)2007.
7. The chronic care model. Improving Chronic Illness Care: Group Health Research Institute; 2014. Available from:
8. Maizes V, Rakel D, Niemiec C. Integrative medicine and patient-centered care. Explore. 2009;5(5):277-89.
9. Gijsen R. Chronische ziekten en multimorbiditeit - Omvang van het probleem: Hoeveel mensen hebben één of meer chronische ziekten? Nationaal
Kompas Volksgezondheid, 2013.
10. Comorbiditeit bij 15 veelvoorkomende aandoeningen in de huisartspraktijk: Nationaal Kompas; 2007.
11. Healthy Aging. Centers for Disease Control 2011.
12. Chronic disease: National Council on Aging; 2014. Available from: http://www.ncoa.org/improve-health/center-for-healthy-aging/chronic-disease/.
13. Chronic Disease Overview page: Centers for Disease Control and Prevention; 2007.
14. Anderson G. Chronic Care: Making the Case for Ongoing Care. 2010.
15. Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. The Milbank quarterly. 1996;74(4):511-44.
16. The Chronic Care Model. ACP-ASIM Journals and Books.
17. National Ambulatory Medical Care Survey: 2010 Summary Tables. Centers for Disease Control, 2010.
18. Schoen C, Osborn R, Squires D, Doty M, Rasmussen P, Pierson R, et al. A survey of primary care doctors in ten countries shows progress in use of
health information technology, less in other areas. Health affairs. 2012;31(12):2805-16.
19. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health
affairs. 2001;20(6):64-78.
20. Bosworth HB. Improving Patient Treatment Adherence: A Clinician's Guide. New York: NY: Springer New York; 2010.
21. Friedman DS, Hahn SR, Gelb L, Tan J, Shah SN, Kim EE, et al. Doctor-patient communication, health-related beliefs, and adherence in glaucoma
results from the Glaucoma Adherence and Persistency Study. Ophthalmology. 2008;115(8):1320-7, 7 e1-3.
22. Hahn SR. Patient-centered communication to assess and enhance patient adherence to glaucoma medication. Ophthalmology. 2009;116(11
23. Lowes R. Patient-centered care for better patient adherence. Family practice management. 1998;5(3):46-7, 51-4, 7.
24. Robinson JH, Callister LC, Berry JA, Dearing KA. Patient-centered care and adherence: definitions and applications to improve outcomes. Journal
of the American Academy of Nurse Practitioners. 2008;20(12):600-7.
25. Stavropoulou C. Non-adherence to medication and doctor–patient relationship: Evidence from a European survey. Patient Education and
Counseling. 2011;83(1):7.
26. Stone S. A retrospective evaluation of the impact of the Planetree patient-centered model of care on inpatient quality outcomes. Herd.
27. Epstein RM, Franks P, Shields CG, Meldrum SC, Miller KN, Campbell TL, et al. Patient-centered communication and diagnostic testing. Annals
of family medicine. 2005;3(5):415-21.
28. Caffarini K. Patient-centered care found to reduce medical costs. Journal of the American Board of Family Medicine. 2011.
29. Bertakis KD, Azari R. Patient-centered care is associated with decreased health care utilization. Journal of the American Board of Family Medicine
: JABFM. 2011;24(3):229-39.
30. Rooijen M, Brabers A, Jong J. Selectie aan de poort. Tijds gezondheidswetenschappen. 2013;91(1):41-3.
31. Forrest CB. Primary care in the United States: primary care gatekeeping and referrals: effective filter or failed experiment? BMJ.
32. Boerma WG, van der Zee J, Fleming DM. Service profiles of general practitioners in Europe. European GP Task Profile Study. The British journal
of general practice : the journal of the Royal College of General Practitioners. 1997;47(421):481-6.
33. Gervas J, Perez Fernandez M, Starfield BH. Primary care, financing and gatekeeping in western Europe. Family practice. 1994;11(3):307-17.
34. Forrest CB, Glade GB, Starfield B, Baker AE, Kang M, Reid RJ. Gatekeeping and referral of children and adolescents to special ty care. Pediatrics.
1999;104(1 Pt 1):28-34.
35. Schoen C, Osborn R, How SK, Doty MM, Peugh J. In chronic condition: experiences of patients with complex health care needs, i n eight
countries, 2008. Health affairs. 2009;28(1):w1-16.
36. Patient-centered medical home recognition: National Committee for Quality Assurance; 2014. Available from:
37. Helfgott AW. The patient-centered medical home and accountable care organizations: an overview. Current opinion in obstetrics & gynecology.
38. DePuccio MJ, Hoff TJ. Medical home interventions and quality outcomes for older adults: a systematic review. Quality management in health care.
39. Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorskii A, et al. Interventions for providers to promote a patient -centred
approach in clinical consultations. The Cochrane database of systematic reviews. 2012;12:CD003267.
40. Fifield J, Forrest DD, Burleson JA, Martin-Peele M, Gillespie W. Quality and efficiency in small practices transitioning to patient centered medical
homes: a randomized trial. Journal of general internal medicine. 2013;28(6):778-86.
41. Rosenberg CN, Peele P, Keyser D, McAnallen S, Holder D. Results from a patient-centered medical home pilot at UPMC Health Plan hold lessons
for broader adoption of the model. Health affairs. 2012;31(11):2423-31.
42. Rosenthal TC. The medical home: growing evidence to support a new approach to primary care. Journal of the American Board of Family
Medicine : JABFM. 2008;21(5):427-40.
43. Gillum RF. From papyrus to the electronic tablet: a brief history of the clinical medical record with lessons for the digital age. The American
journal of medicine. 2013;126(10):853-7.

44. Davis K, Abrams M, Stremikis K. How the Affordable Care Act will strengthen the nation's primary care foundation. Journal of general internal
medicine. 2011;26(10):1201-3.
45. Ormond B, Richadson E, Spillman B, Feder J. Health homes in Medicaid: the promise and the challenge. The Urban Institute, 2014.
46. Nuñez DE, Armbruster C, W.T. P, B.J. G. Community-based senior health promotion program using a collaborative practice model: the Escalante
Health Partnerships. Public Health Nursing. 2003;20(1):7.
47. Katula JA, Vitolins MZ, Rosenberger EL, Blackwell CS, Morgan TM, Lawlor MS, et al. One-year results of a community-based translation of the
Diabetes Prevention Program: Healthy-Living Partnerships to Prevent Diabetes (HELP PD) Project. Diabetes care. 2011;34(7):1451-7.
48. Phelan EA, Williams B, Snyder SJ, Fitts SS, LoGerfo JP. A five state dissemination of a community-based disability prevention program for older
adults. Clinical interventions in aging. 2006;1(3):267-74.
49. Teri L, McCurry SM, Logsdon RG, Gibbons LE, Buchner DM, Larson EB. A randomized controlled clinical trial of the Seattle Protocol for
Activity in older adults. Journal of the American Geriatrics Society. 2011;59(7):1188-96.
50. Fitts SS, Won CW, Williams B, Snyder SJ, Yukawa M, Legner VJ, et al. What is the Optimal Duration of Participation in a Community-Based
Health Promotion Program for Older Adults? Journal of applied gerontology : the official journal of the Southern Gerontological Society.
51. Beswick AD, Rees K, Dieppe P, Ayis S, Gooberman-Hill R, Horwood J, et al. Complex interventions to improve physical function and maintain
independent living in elderly people: a systematic review and meta-analysis. Lancet. 2008;371(9614):725-35.
52. Goeree R, von Keyserlingk C, Burke N, He J, Kaczorowski J, Chambers L, et al. Economic appraisal of a community-wide cardiovascular health
awareness program. Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.
53. Administration on Aging. Department of Health and Human Services: Health, Prevention, and Wellness Programs, 2013.
54. Stiggelbout M, Popkema DY, Hopman-Rock M, de Greef M, van Mechelen W. Once a week is not enough: effects of a widely implemented group
based exercise programme for older adults; a randomised controlled trial. Journal of epidemiology and community health. 2004;58(2):83-8.
55. Williams ME, Pulliam CC, Hunter R, Johnson TM, Owens JE, Kincaid J, et al. The short-term effect of interdisciplinary medication review on
function and cost in ambulatory elderly people. Journal of the American Geriatrics Society. 2004;52(1):93-8.
56. What is a health center. U.S. Department of Health and Human Services, 2013.
57. The Affordable Care Act and health centers. U.S. Department of Health and Human Services, 2013.
58. Lee CY, Kim HS, Ahn YH, Ko IS, Cho YH. Development of a community health promotion center based on the World Health Organization's
Ottawa Charter health promotion strategies. Japan journal of nursing science : JJNS. 2009;6(2):83-90.
59. Rose DJ, Hernandez D. The role of exercise in fall prevention for older adults. Clinics in geriatric medicine. 2010;26(4):607-31.
60. Hill K, Smith R, Fearn M, Rydberg M, Oliphant R. Physical and psychological outcomes of a supported physical activity program for older carers.
Journal of aging and physical activity. 2007;15(3):257-71.
61. Gattuso S. Promoting mental health in rural elders: a pilot program. Australasian Journal on Ageing. 2003;22(2).
62. Ackermann RT, Cheadle A, Sandhu N, Madsen L, Wagner EH, LoGerfo JP. Community exercise program use and changes in healthcare costs for
older adults. American journal of preventive medicine. 2003;25(3):232-7.
MORTALITY IN COMMUNITY-DWELLING OLDER ADULTS. Value in health : the journal of the International Society for
Pharmacoeconomics and Outcomes Research. 2011;14(3):A108.
64. Mayer C, Williams B, Wagner EH, LoGerfo JP, Cheadle A, Phelan EA. Health care costs and participation in a community-based health promotion
program for older adults. Preventing chronic disease. 2010;7(2):A38.


The Role of Health Information Technology in
achieving Person-Centered Care
A Review of Benefits, Costs, Challenges, Limitations and Future Directions

Stefan J. A. Remmers - Radboud University Nijmegen
Brennan F. Cornell - Pennsylvania State University

Introduction: Health Information Technology (HIT), a field including Electronic Medical Records, Personal Health
records and Consumer Health Informatics is changing the way that we do medicine. This review will focus on portions of
HIT that will bring modern medicine closer to the goal of person-centered care, and cover topics such as shared decision-
making, access to ones medical records, nationally accessible records, internet portals and data security, using the
internet to gather health information and the value of communities for healthcare.
Methods: Pubmed, Web of Science and Google Scholar were searched for keywords relevant to HIT, either alone or
in combination with keywords directed at the aging society. Titles and abstracts were screened, and the full papers were
read if deemed useful. In addition, the reference lists of useful papers were screened for additional papers. Bibliographies
of first authors were investigated. Finally, the most recent volumes of the Journal of Medical Internet Research (JMIR)
were reviewed individually.
Results: Health information technology (HIT) can offer great benefits to patients. Accessible data sources help
patients look up relevant information to prepare for visits, save time, and promote shared decision-making. Online
communities can be an invaluable source of information, tips and experience that may not be obtained from the
physician’s office. Accessible electronic health records will allow patients to see and review their condition and the
physician’s suggestions while patients can search for additional information in their own time. This allows the patient to
take more responsibility and ownership for his health, a key part of person-centered care. However, data accessibility,
security and privacy are concerns that have to be dealt with.
EMRs allow medical professionals to access up-to-date records quickly, saving time, money and lives. Physicians can
keep track of their patients’ health through online applications and self assessments and help them manage chronic
Conclusions: This unprecedented access to patient information by doctor and patient allows for significant shifts in
the industry, but some things continue to hold back growth. In order to fully utilize the benefits of technologies such as
electronic and national health records, patient portals and internet information sources, they should be implemented better
in our healthcare system. Privacy, security, user friendliness and simplicity must be key points of interest during
implementation. Physicians, patients and other healthcare professionals will have to accept HIT and learn how to use the
systems effectively and safely to see the added benefit. This learning can be facilitated by training programs, and
integrating IT training into the curriculum for the next generations of professionals. However, it is important to realize
that these portals, applications and websites act complementary to patient visits and facilitate better action of all
professionals involved. HIT will not replace actual physicians, as they are the ones most capable to properly diagnose
and treat a patient.


Health Information Technology (HIT) is changing the way that we do medicine, but HIT is an incredibly broad field.
It includes Electronic Medical Records (EMRs), Consumer Health Informatics (CHI), mobile applications, Personal
Health Records (PHRs), telemedicine and more. This review will focus on portions of HIT that will bring modern
medicine closer to the goal of person-centered care. Person-centered care goes beyond just talking about medical care. It
takes into account decision making, culture, and communication with your practitioner.
Already, Several studies show that the use of EMRs leads to a higher standard of care, better collaboration between
and improved outcomes
2, 3
. A computer can also recommend treatment options to a physician by using the
patient’s record
4, 5
. High rates of comorbidities that can complicate a patient’s case make robust computer analysis
extremely important
. In the future, EMR will analyze patients’ genomes to suggest more effective treatments
.But even
benefits like these do not show the true power of HIT.
HIT goes beyond just medical care. For example, EMRs allow physicians to share records easily and eliminate errors
8, 9
. PHRs give patients custodianship over medical records and fill in gaps in data quality
. There are also online
sources of information that provide structure for patients to find information. Static sources of information such as
Wikipedia, WebMD
, Healthfinder
and SeniorHealth
provide plain text health information. Open and closed health
communities such as PatientsLikeMe
, MijnZorgNet
and the Canadian Virtual Hospice
contain message boards,
discussion forums and chat rooms. Open communities are generally open to anyone, while closed communities let a
select group of patients and medical professionals share information in private
. Studies show that 60 to 80% of adults
search for health information online
18, 19
, but only 4% of adults were shown to use health communities
. Some of the
most popular websites are allowing the patients to access all types of information. Many of these websites also provide
relevant contact information and direct the patient to medical facilities that are equipped or licensed to perform specific
procedures or treatments. A great example is ParkinsonNet, founded by healthcare innovator Bas Bloem, which is a
professional network that involves training a select number of experts (such as physiotherapists) that specialize in helping
Parkinson’s Disease patients
. Although health outcomes might not necessarily change, costs can be reduced
The next generation of HIT will disseminate information quickly and with as much security as necessary and will
allow patients and doctors alike to gather information and communicate effectively. In doing so, doctor and patient will
be better prepared for in-person visits and be able to eliminate unnecessary visits.

Aim of this study
This review will focus on the role of HIT in bringing modern medicine closer to the goal of person-centered care and
cover topics such as shared decision-making, access to medical records, nationally accessible records, internet portals,
using the internet to gather health information, the value of communities for healthcare, and issues concerning privacy
and data security

A literature search was conducted for the topics EMR and CHI. First, PubMed, Web of Science and Google Scholar
were searched for keywords ‘Electronic Health Records’, ‘Electronic Medical Records’, ‘Electronic Medical Records
Implementation’, ‘Electronic Health Records Implementation’, ‘Electronic Medical Records costs’, ‘Electronic Health
Records Costs’, ‘EMR’, ‘EHR’, ‘ehealth’, ‘e-health’, ‘eMedicine’, ‘e-Medicine’, ‘consumer health informatics’,
‘consumer health information’, ‘health informatics’, ‘CHI’, ‘internet health’, ‘internet information’, ‘web health’, ‘HIT’,
‘healthcare information technology’, ‘health information technology’. These keywords were searched for either alone or
in combination with any of the following keywords directed at the aging society: ‘elderly’, ‘elders’, ‘age’, ‘aging’,
‘seniors’, ‘older people’, ‘older adults’. Titles and abstracts were read to determine the usefulness of papers, and the full
papers were read if deemed useful. It is important to note that, due to the number of search results for EMR, the search
was stopped after articles no longer seemed relevant to the topic. In addition, the reference lists of useful papers were
screened for additional papers and bibliographies of first authors were investigated. Finally, the most recent volumes of
the Journal of Medical Internet Research (JMIR) were reviewed individually by the authors.


Privacy and Security
One of the most prevalent issues in HIT is privacy. Health information is very sensitive and everyone who works in
healthcare is required to safeguard the privacy of their patients. With new technologies like the discussion boards, it may
be difficult to know how to properly protect a patient’s information. Privacy is maintained by allowing users to
communicate using an alias when signing up for an account, but research has shown that it is possible to identify users by
correlating word choice and writing style
. Security measures are meant to restrict access to the information. Apart from
a login procedure, the website may require additional information before access is granted and content can be viewed. A
few examples are a valid patient number (some MijnZorgNet discussion boards), the content of a text message sent to a
verified phone number (Dutch government websites that log in through DigiD) or a code generated by a physical card
and card reader (such as the Rabobank Random Reader in combination with the users’ bank card and PIN code). There
must be some system in place that verifies whether the person answering the questions actually is a professional, and not
just someone claiming to be. An option would be to demand verification through the Dutch Beroepen Individuele
Gezondheidszorg (BIG) registry or a background check and any of the aforementioned security measures.
Privacy and security have long been issues in the EMR arena as well
24, 25
. Work has been completed on how to secure
electronic medical records without impeding flow of information
. In a report published by Rakesh Agrawal et al., the
authors describe various methods used for protecting sensitive information, just one of which is called k-
. Many fear that creating an easily accessible medical record would make it easy for someone
unauthorized to access an individual’s records. In the Netherlands, attempts were made to implement a national EMR,
but the system failed due to many privacy concerns
. Despite the failure, it is easy to track who accesses a file and
punish those that abuse their power. For example, an employee of the Penn State Hershey Medical Center was fired after
looking at a patient’s file without good reason for doing so
. Furthermore, it might be assumed that there is a high
possibility of litigation in the field. However, there are guidelines on the best management practices to prevent this and
despite the surrounding privacy issues, early adopters of EMRs have not experienced significant problems with liability
. One of the biggest issues in EMRs is data mining research that uses medical records. Researchers can discover
knowledge and create new resources for doctors using your data, but what is the chance that a researcher will use your
medical data maliciously? No one knows how best to protect patients from having their identity compromised as such
techniques are not yet well understood yet
. In examples that use genetic data mining, individuals may be re-identified
using their genome even if their data has been secured
An issue related to genomics is the return of genetic correlations. In a particular study, the electronic Medical Records
and Genomics (eMERGE) Network examined the issue of returning results of genetic studies. While all biorepositories
acknowledged to patients of these studies that their results would most likely never be returned to them, there is a
question that arises from this. What if the genetic tests yielded results that could be acted upon? Ethical issues like these
are common with genome studies
. Consent is another portion of the data mining problem in the above paragraph.
Traditionally, consent is granted via an opt-in/opt-out system inside of the EMR. This restricts the sample size and
sample diversity for any research done and has the potential to yield biased, or at least incomplete results
. Arguments
have been made that, because database research doesn’t affect the patient’s life, consent policies put into effect to protect
patients no longer apply and should be eliminated. While this was successful in Scandinavia (where such a loss of
autonomy is accepted), it is unlikely to be successful in other developed nations

Currently, many factors stand in the way of integrating health information technology into the healthcare system, the
first of which is access to a computer with internet access. In many developing countries access to the internet is a real
. This barrier is almost negligible in the Netherlands and most of the developed world, where those that do not
access the internet choose so
For the current generation of elder people, the difficulty in learning how to use a computer, the internet and
technology should not be underestimated
. Most elder people realize that the internet is an invaluable tool to gather
, but they greatly underutilize it
. Many have ‘computer anxiety’ and inefficient ways of searching for
information. In addition, the layout of web pages and applications is often not senior-friendly, limiting their usefulness
Although they might own a computer, they have not grown up with it and don’t feel as comfortable with it as younger
people. Interest in the internet and its potential for healthcare has been shown to decline with increasing age

For consumer health informatics, information overflow is a major problem. There is so much information that any
consumer would have trouble finding the information they are looking for even if it exists
. It is often compared to
drinking water from a fire hose
. In addition, information is directed towards a specific audience, and will be written in
languages or styles the consumer finds difficult to understand. Even if the reader finds the information, he often does not
know whether the information is valid. Intention, target group and credentials of the author
are often lacking in online
information. In addition, information can be inaccurate, incomplete, outdated, misleading, out of context or even
dangerous to the consumer
. Quality control of information can be achieved in multiple ways, including peer-review,
rating systems and seals of approval
41, 42
. While scientific information is regulated through peer-review, the method most
used today for information targeted at the general public are seals of approval like those by the Health on the Net
. Though even with these seals of approval, the consumer does not know whether the information is valid,
only that the website in general meets certain requirements.

A big problem with the current healthcare system, especially for EMR’s, is that current systems
don’t allow for interaction or innovation. Open systems need to be developed that will drive innovations that will
eventually reduce cost, increase the quality and continuity of care, and will make sharing information easier
. However,
high up-front costs of creating the new system and integrating old systems is a disincentive for developing and
implementing new systems. While a few studies show otherwise, there is no perceived return on investment for
implementing a new system
Data quality has also been shown to be a problem with implementation. In a study of the clinical data warehouse of
Columbia Medical Center in NYC, incompleteness was the most systemic data quality problem (48% of patients with
pancreatic malignancies did not have diagnoses or pathology reports). The next biggest problems were inaccuracy and
Australia, New Zealand, and England have been good examples for studying EMR implementation. They experienced
very high implementation by creating a development plan that was mutually beneficial to everyone in the industry
Additionally, a relevant study outlined 8 dimensions that would govern safe and effective use of EMRs. These eight
dimensions cover each facet of implementing an EMR system and outlines guidelines during each step of
Patients need to have access to their medical records. In most countries, healthcare providers are required to provide
health data and records to patients, but the timeliness of delivering the records is not well defined. In Ontario, providers
can deny a request deemed “superfluous” by the health provider
. Although everyone in the Netherlands is permitted by
law to access their own patient record, this takes quite a long time, and records are received on paper and at a cost. In the
US, most legislation guarantees patients access to their records, but is less clear on when this access should be granted
A minority (41%) of physicians believe that patients should control their own records and be able to prevent their
healthcare provider from seeing one aspect of their records. However, 54% of patients believe they should have this
. When either is given the role of custodianship, they must decide what is relevant for the provider/patient to see.
There may be a disagreement on what the patient/doctor believes is relevant for him/her to see
There are many reasons for giving at least partial custodianship to patients. It ensures there is no delay in patients
making critical medical decisions since all the data they need is readily available to them
. In addition, sharing patient
data can result in improved patient adherence and improved coordination of care. Sharing data also has the potential to
reduce system use and increase patient satisfaction
The Radboud UMC is one of the first Dutch hospitals to provide a digital patient portal that allows patients to access
their medical record on the internet. Some hospitals in the United States use health portals as well. Hershey Medical
Center in Hershey, PA has invested a lot into providing a patient- and family-centered approach to health. Hershey
implemented a portal that allows patients to securely message their healthcare professionals, manage their appointments,
view test results, and review their medical history


The preceding literature review revealed the current situation, challenges and ideal outcomes both in the Netherlands
and in the United States. Based on that, we have formulated several lessons and implementation strategies that discuss
how we believe our countries should proceed in implementing Health Information Technology into the healthcare

Privacy and Implementation
One thing has become especially obvious in the preceding review: the future of health care is going to be data rich.
We will achieve the best results by using that data as effectively and efficiently as possible. It will be important to pay
special attention to costs, but also equally important to invest in solutions that will save patients (and money) down the
road. To do this, constant monitoring and development of metrics to monitor provider operations will be important
Clinical analytics are going to be one of the major areas of innovation that we see in the future
. These methods will
solve complex medical problems that are not well understood such as comorbidities (co-occurrence of diseases). Clinical
analytics may be able to shed light on particularly effective treatments and potentially integrate genomic data into the
. Elders would be particularly likely to benefit from this, since elders have a much higher incidence of
comorbidities. For such complex data analysis, researchers will need to access large amounts of data that will only be
practical with a more interoperable system of EMR. One example of such an open system in is the SMART platform
Anything that can be done to expedite this process will be influential in patient outcomes and optimizing efficiency.
Privacy is one of the major problems with implementation in all of HIT. If privacy is given careful thought, privacy
violations can be prevented. Techniques for improving security are mentioned in the above paragraphs including
examples in both the US and the Netherlands where lessons were learned by those institutions who attempted to
implement EMR.

The first step in successfully implementing CHI into our healthcare system is to make the reliable information both
accessible and findable for the consumer. Most importantly, this will require healthcare professionals to have a positive
attitude toward CHI, as they are the most qualified people to assess whether information is valid and appropriate for the
current situation. It may prove difficult to convince physicians to accept the paradigm shift and practice medicine using
information technology. Training sessions and tutorials that guide them and highlight the advantages of the system are
necessary to make physicians comfortable enough to want to use CHI. In the future, medical students should receive IT
training in their curriculum.
A major role of the physician in the implementation of CHI is filtering through the information for relevant sources in
their field. If no good sources are available, the physician should consider creating his own. Consumers prefer user
friendly designs and intuitive navigation, especially those unfamiliar with the internet. Readable font sizes, colors and
contrast should be used to this end
36, 49
. Once the physician or medical society has collected several websites with
information relevant to patients, they can control what the patient reads and share exactly what the patient needs.
Physicians can give patients the website name or hyperlink via messaging or email exchange. This open conversation
with the physician is desired by many, but still uncommon
The same holds true for discussion boards. A physician should be aware of any relevant discussion boards in his field,
and be able to direct interested patients towards those boards. New communities need active members to be effective
These members need to post interesting news and updates and keep discussions alive in order to provide the added
benefit to all involved.
. For that reason, a viable implementation strategy targeting both the patients and physicians
must be developed if such discussion boards are to be created.
Closed health communities require a different approach. Aside from informing the patient, they can be used to
improve communication among healthcare professionals. Ideally, all decision making healthcare professionals treating a
patient should be part of the same communication system. They should be able to efficiently discuss with other
professionals and the patient about the best course of action. This requires a system that is secure, user friendly, and can
bring together all relevant professionals and the patient in a straight forward non-cumbersome way. MijnZorgNet has
come a long way in the past years, but there are a few additional factors that limit the success of this platform, most
importantly the lack of knowledge about its existence. Even though patients can sign up quickly and at no cost, it is likely
that the physician they wish to contact is not a member of the website. Individual patients will get much more out of the
system when more physicians become active users. While MijnZorgNet aims to create a national system, regional portals

could be effective as well, and require less effort to implement. The biggest limitation of this is that many kinds of
treatment are only conducted at a select number of specialized hospitals, whose physicians would not be part of these
Finally, the patients and physicians have to be taught how to use these information systems. The most effective way
to introduce the internet and health searching to elder people is to organize training sessions. Even a few weekly sessions
can make a fundamental difference in their comfort with, understanding of and use of the internet
53, 54
. Training sessions
increase internet interest and searching efficiency, improve attitude, knowledge, skill, health literacy, self-efficacy and
decrease computer anxiety
49, 55-58

Health information technology (HIT) can offer great benefits to patients. Patients have the option to quickly look up
relevant and valid health information, self-diagnosing tools and their medical records. This access to information can
save people a trip to the physician, or help them determine whether they should visit the physician at all. Not only will
this make them better prepared for the visit, but it will also allow them to engage in shared decision making and discuss
how to proceed, an important step towards person-centered care. In addition, HIT can provide relevant information after
a visit with as much detail as needed and the patient can study it on their own time. This is especially important when
elder patients have hearing loss, communication problems or memory issues and need more time to digest the
information. Communities can be an invaluable source of information, tips and experience that might not be obtained
from the physician’s office. That way, the brilliant ideas of one patient can be shared instantly with the entire world.
Accessible electronic health records will allow patients to see and review their condition and the physician’s suggestions.
This allows the patient to take more responsibility and ownership for his health, a key part of person-centered care.
In addition to patients, physicians and other medical professionals benefit greatly from health information technology.
National or regional electronic medical records allow physicians to immediately access the data they need, circumventing
lengthy procedures of requesting information from other hospitals. This will save time and improve the prognosis of
patients as a result. Patient visits can be improved by allowing patients access to their health data, referring them to
relevant health websites and letting them prepare for a visit in advance. It can save time, and promote shared decision
making. After the visit, physicians can keep track of their patients through online applications and help them manage
chronic diseases (especially applicable to elder patients). For these reasons, we need to successfully implement the
technology into our healthcare system. Privacy, security, user friendliness and simplicity should be key points of interest
during implementation. The physicians, patients and other healthcare professionals will have to accept this and learn how
to use the systems effectively and safely to see the added benefit. This learning can be facilitated by training programs,
and integrating IT training into the curriculum for the next generations of physicians.
Even though health information technology has enormous potential, it is important to realize that accessing
information or medical data on the internet should not, and probably never will replace face-to-face contact with a
physician. No matter what is written in a record or on a webpage, the visit to the physician’s office is still necessary to
assure proper diagnosis of a patient, and reliance on the physician is not likely to be changed by any website, portal or
application anytime soon
. Instead, the internet and visits should complement each other. The doctor still determines
what’s wrong with the patient, and the internet should be used to determine whether someone should visit the doctor, to
gain information to prepare for a doctor’s visit, to gain information after a diagnosis, or to help manage a condition or


1. Wang SJ, Middleton B, Prosser LA, Bardon CG, Spurr CD, Carchidi PJ, et al. A cost-benefit analysis of electronic medical records in primary care.
The American journal of medicine. 2003;114(5):397-403.
2. Cebul RD, Love TE, Jain AK, Hebert CJ. Electronic health records and quality of diabetes care. New England Journal of Medicine.
3. Venkatesh V, Zhang X, Sykes TA. “Doctors do too little technology”: a longitudinal field study of an electronic healthcare system implementation.
Information Systems Research. 2011;22(3):523-46.
4. Crane SJ, Tung EE, Hanson GJ, Cha S, Chaudhry R, Takahashi PY. Use of an electronic administrative database to identify older community
dwelling adults at high-risk for hospitalization or emergency department visits: The elders risk assessment index. BMC health services
research. 2010;10(1):338.
5. Graham S, Estrin D, Horvitz E, Kohane I, Mynatt E, Sim I. Information technology research challenges for healthcare: From discovery to delivery.
ACM SIGHIT Record. 2011;1(1):4-9.
6. Smith DH, Perrin N, Feldstein A, Yang X, Kuang D, Simon SR, et al. The impact of prescribing safety alerts for elderly persons in an electronic
medical record: an interrupted time series evaluation. Archives of Internal Medicine. 2006;166(10):1098-104.
7. Jensen PB, Jensen LJ, Brunak S. Mining electronic health records: towards better research applications and clinical care. Nature Reviews Genetics.
8. Miller RH, Sim I. Physicians’ use of electronic medical records: barriers and solutions. Health affairs. 2004;23(2):116-26.
9. Bates D, Cohen M, Leape L, Overhage JM, Shabot MM, Sheridan T. Reducing the frequency of errors in medicine using information technology.
Journal of the American Medical Informatics Association. 2001;8(4):299-308.
10. Botsis T, Hartvigsen G, Chen F, Weng C. Secondary use of EHR: data quality issues and informatics opportunities. AMIA Summits on
Translational Science Proceedings. 2010;2010:1.
11. Bobinac A, van Exel J, Rutten FFH, Brouwer WBF. The Value of a QALY: Individual Willingness to Pay for Health Gains Under Risk.
PharmacoEconomics. 2014;32:75-86.
12. Bergeson SC, Dean JD. A systems approach to patient-centered care. JAMA. 2006;296:2848-51.
13. Bertakis KD, Azari R. Patient-centered care is associated with decreased health care utilization. Journal of the American Board of Family Medicine
: JABFM. 2011;24(3):229-39.
14. Patients Like Me 2006 [cited 2013 September]. Available from: www.patientslikeme.com.
15. Beswick AD, Rees K, Dieppe P, Ayis S, Gooberman-Hill R, Horwood J, et al. Complex interventions to improve physical function and maintai n
independent living in elderly people: a systematic review and meta-analysis. Lancet. 2008;371(9614):725-35.
16. Bobicev V, Sokolova M, El Emam K, Jafer Y, Dewar B, Jonker E, et al. Can anonymous posters on medical forums be reidentified? Journal of
medical Internet research. 2013;15(10):e215.
17. van der Eijk M, Faber MJ, Aarts JW, Kremer JA, Munneke M, Bloem BR. Using online health communities to deliver patient -centered care to
people with chronic conditions. Journal of medical Internet research. 2013;15(6):e115.
18. Atkinson NL, Saperstein SL, Pleis J. Using the internet for health-related activities: findings from a national probability sample. Journal of medical
Internet research. 2009;11(1):e4.
19. Van de Belt TH, Engelen LJ, Berben SA, Teerenstra S, Samsom M, Schoonhoven L. Internet and social media for health-related information and
communication in health care: preferences of the Dutch general population. Journal of medical Internet research. 2013;15(10):e220.
20. Keus SH, Nijkrake MJ, Borm GF, Kwakkel G, Roos RA, Berendse HW, et al. The ParkinsonNet trial: design and baseline characteristics.
Movement disorders : official journal of the Movement Disorder Society. 2010;25(7):830-7.
21. Nijkrake MJ, Keus SH, Overeem S, Oostendorp RA, Vlieland TP, Mulleners W, et al. The ParkinsonNet concept: development, implementation
and initial experience. Movement disorders : official journal of the Movement Disorder Society. 2010;25(7):823-9.
22. van der Eijk M, Nijhuis FA, Faber MJ, Bloem BR. Moving from physician-centered care towards patient-centered care for Parkinson's disease
patients. Parkinsonism & related disorders. 2013;19(11):923-7.
23. Munneke M, Nijkrake MJ, Keus SH, Kwakkel G, Berendse HW, Roos RA, et al. Efficacy of community-based physiotherapy networks for patients
with Parkinson's disease: a cluster-randomised trial. Lancet neurology. 2010;9(1):46-54.
24. Hall MA. Property, Privacy, and the Pursuit of Interconnected Electronic Medical Records. Iowa Law Review. 2010;95(2).
25. Beard L, Schein R, Morra D, Wilson K, Keelan J. The challenges in making electronic health records accessible to patients. Journal of the
American Medical Informatics Association. 2012;19(1):116-20.
26. Agrawal R, Johnson C. Securing electronic health records without impeding the flow of information. International journal of medical informatics.
27. Eerste Kamer der Staten-Generaal 2011. Available from: http://www.eerstekamer.nl/nieuws/20110405/wetsvoorstel_epd_verworpen_en.
28. Genim S. Hershey Medical Center employee fired after breach of Joe Paterno's records. The Patriot -News. 2011.
29. Kho AN, Rasmussen LV, Connolly JJ, Peissig PL, Starren J, Hakonarson H, et al. Practical challenges in integrating genomic data into the
electronic health record. Genetics in Medicine. 2013;15(10):772-8.
30. Fullerton SM, Wolf WA, Brothers KB, Clayton EW, Crawford DC, Denny JC, et al. Return of individual research results from genome-wide
association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network. Genetics in Medicine.
31. Cline RJ, Haynes KM. Consumer health information seeking on the Internet: the state of the art. Health education research. 2001;16(6):671-92.
32. Centraal Bureau voor de Statistiek 2012 [cited 2013 September]. Available from:
33. Czaja SJ, Charness N, Fisk AD, Hertzog C, Nair SN, Rogers WA, et al. Factors predicting the use of technology: findings from the Center for
Research and Education on Aging and Technology Enhancement (CREATE). Psychology and aging. 2006;21(2):333-52.
34. Czaja SJ, Sharit J, Nair SN. Usability of the Medicare health web site. JAMA. 2008;300(7):790-2.
35. Miller LM, Bell RA. Online health information seeking: the influence of age, information trustworthiness, and search challenges. Journal of aging
and health. 2012;24(3):525-41.
36. Devlin M. Network librarians conclude outreach projects. Part III: Health information for elders 2003 [cited 34 4]. Available from:
37. Stroetmann VN, Husing T, Kubitschke L, Stroetmann KA. The attitudes, expectations and needs of elderly people in relation to e-health
applications: results from a European survey. Journal of telemedicine and telecare. 2002;8 Suppl 2:82-4.
38. Eysenbach G, Sa ER, Diepgen TL. Cybermedicine. Interview by Clare Thompson. BMJ. 1999;319(7220):1294.
39. Eysenbach G, Diepgen TL. Labeling and filtering of medical information on the Internet. Methods of information in medicine. 1999;38(2):80-8.
40. Eysenbach G, Diepgen TL. Towards quality management of medical information on the internet: evaluation, labelling, and filter ing of information.
BMJ. 1998;317(7171):1496-500.
41. Eysenbach G. Consumer health informatics. BMJ. 2000;320(7251):1713-6.

42. Brann M, Anderson JG. E-medicine and health care consumers: recognizing current problems and possible resolutions for a safer environment.
Health care analysis : HCA : journal of health philosophy and policy. 2002;10(4):403-15.
43. Health Expenditures. CDC/National Center for Health Statistics. 2013:http://www.cdc.gov/nchs/fastats/hexpense.htm.
44. Bates DW, Ebell M, Gotlieb E, Zapp J, Mullins H. A proposal for electronic medical records in US primary care. Journal of the American Medical
Informatics Association. 2003;10(1):1-10.
45. Sittig DF, Singh H. A new sociotechnical model for studying health information technology in complex adaptive healthcare systems. Quality and
Safety in Health Care. 2010;19(Suppl 3):i68-i74.
46. Hubbard RE, O'Mahony MS, Woodhouse KW. Medication prescribing in frail older people. European Journal of Clinical Pharmacology.
47. Weiner JP, Fowles JB, Chan KS. New paradigms for measuring clinical performance using electronic health records. International Journal for
Quality in Health Care. 2012;24(3):200-5.
48. Mandl KD, Mandel JC, Murphy SN, Bernstam EV, Ramoni RL, Kreda DA, et al. The SMART Platform: early experience enabling substitutable
applications for electronic health records. Journal of the American Medical Informatics Association. 2012;19(4):597-603.
49. Czaja SJ, Sharit J, Lee CC, Nair SN, Hernandez MA, Arana N, et al. Factors influencing use of an e-health website in a community sample of older
adults. Journal of the American Medical Informatics Association : JAMIA. 2013;20(2):277-84.
50. Dudas RA, Crocetti M. Pediatric caregiver attitudes toward email communication: survey in an urban primary care setting. Journal of medical
Internet research. 2013;15(10):e228.
51. Van 't Riet J, Crutzen R, De Vries H. Investigating predictors of visiting, using, and revisiting an online health-communication program: a
longitudinal study. Journal of medical Internet research. 2010;12(3):e37.
52. Aarts JW, Faber MJ, den Boogert AG, Cohlen BJ, van der Linden PJ, Kremer JA, et al. Barriers and facilitators for the implementation of an online
clinical health community in addition to usual fertility care: a cross-sectional study. Journal of medical Internet research. 2013;15(8):e163.
53. Xie B. Older adults' health information wants in the internet age: implications for patient -provider relationships. Journal of health communication.
54. Choi NG, Dinitto DM. Internet use among older adults: association with health needs, psychological capital, and social capital. Journal of medical
Internet research. 2013;15(5):e97.
55. Xie B, Bugg JM. Public library computer training for older adults to access high-quality Internet health information. Library & information science
research. 2009;31(3):155.
56. Xie B. Effects of an eHealth literacy intervention for older adults. Journal of medical Internet research. 2011;13(4):e90.
57. Xie B. Improving older adults' e-health literacy through computer training using NIH online resources. Library & information science research.
58. Chu A, Huber J, Mastel-Smith B, Cesario S. "Partnering with Seniors for Better Health": computer use and Internet health information retrieval
among older adults in a low socioeconomic community. Journal of the Medical Library Association : JMLA. 2009;97(1):12-20.


Medical Decision Making and (In)competent Elders:
Respecting the Autonomy and Dignity
A Review of Competence, the Use of Advance Directives, and the Family Role in Medical Decision Making

Nicole E. H. Adams - Radboud University Nijmegen
Kathleen M. Quinn - Pennsylvania State University

Introduction: Medical treatment ought to serve the interests of a patient and should be offered in a way that respects
the ‘autonomy’ and ‘dignity’ of patients. This encompasses the right to control healthcare decisions. The aim is to
analyze and understand the medical decision making procedure in regard to (in)competent elders. Legal practice endorses
the principle that elders are competent to make healthcare decisions unless determined to be otherwise. This principle is
embodied through the occurrence of ‘informed consent’. We will examine in what way the elderly patient’s autonomy
and dignity can be ensured when he or she becomes incompetent and is incapable to make healthcare decisions. This
paper focuses on the patient’s decision making competence, investigates the use of advance directives in medical elder
care and the role of family in the decision making process.
Methods: An integrative review of literature was conducted by using online search databases including Pubmed,
Springer Link, Google Scholar and Kluwer navigator. Key words included: ‘autonomy’, ‘competence’, ‘incompetence’,
‘decision making’, ‘patients rights’, ‘advance directive’, ‘role of family’. Relevant literature was also found by
Results: The topic of patient’s decision making competence is complex, problematic and highly controversial. At
first, competence is a legal concept that needs clinical examination to gather relevant information for deciding whether an
elderly patient is competent to make healthcare decisions. When the patient becomes incompetent, professionals often
consult with the family members of the patient about medical interventions and medical treatment. It is important that
patient’s wishes about certain issues are known. The use of advance directive can reduce potential uncertainties. In this
way elderly patient’s autonomy and dignity can be ensured.
Conclusions: Potential uncertainties can be reduced by introducing benefits of advance directives. In this way the
elderly patient’s autonomy and dignity can be ensured when he or she is incapable to make healthcare decisions. It is
important to recognize the inherent limitations of advance directives in planning for the uncertainties of end-of-life care.
The limitations regarding completion, implementation, and underlying assumptions of advance directives should be
considered when discussing decision making at the end of life. Finally, while advance directives address the end-of-life,
which is the most stressful and emotional period of elder care decision making, the tension associated with the decision
making role of the caregiver stretches throughout the entire period of care. Therefore, it is important to address the issue
of caregiver’s burden and programs and practices that may improve the caring experience of both the caregiver and the
elder person receiving care.


According to the cultural and legal practice in the United States and Europe, elder care should be offered in a way that
respects the ‘autonomy’ and ‘dignity’ of the patients. This encompasses the right to control healthcare decisions.
Everyone has the right to accept or refuse any kind of medical treatment. Though, wishes of elders must be better
understood if they want to receive optimal support. One of the fundamental problems for elders living in healthcare
services is that they are not always being asked about what they want or what fits their standards and values
. The
healthcare system is not designed to incorporate patient’s perceptions in medical decision making
. Though, the number
of statutory laws protecting elderly patient rights has strongly increased in the past decade because of the growing elderly
population, the increasing number of elders with memory impairment and more seniors living in residential care
Because of this, specific legal and ethical problems aroused in medical care for elders. Competence is an essential
concept in any jurisdiction that is taking the rights of elderly patients seriously
. However, when elders become unable to
make their own decisions the healthcare providers will use prior written advance directives or the help of family
members to make decisions on their behalf. In this way the elderly patient’s autonomy and dignity can be ensured.

Aim of this study
The aim of this review is to analyze and understand the medical decision making procedure in regard to
(in)competent elders. Legal practice endorses the principle that elders are competent to make healthcare decisions
unless determined to be otherwise. This principle is embodied through the occurrence of ‘informed consent’. We will
examine in what way the elderly patient’s autonomy and dignity can be ensured when he or she becomes incompetent
and is incapable to make healthcare decisions. This paper focuses on the patient’s decision making competence,
investigates the use of advance directives in medical elder care and the role of family in the decision making process.

An integrative review of literature was conducted by using online search databases including Pubmed, Springer Link,
Google Scholar and Kluwer navigator. Key words included: ‘autonomy’, ‘competence’, ‘incompetence’, ‘decision
making’, ‘patients rights’, ‘advance directive’, ‘role of family’. Relevant literature was also found by snowballing.


1. Competence of elderly patients

Whether elderly patients have lost decisional capacity depends upon their ‘competence’. It should never be assumed
that elders are not able to make healthcare decisions simply because of frailty or age. Elders are standard assumed to be
competent to make healthcare decisions
. Although when elders have cognitive impairment, extra steps must be taken to
measure whether the patient has the ability to understand and realize the risks, benefits, and requirements of his or her
health state and treatment
. The fact that elders might be unable to make medical decisions does not mean that they are
unable to make any kind of decisions. We can distinguish day-to-day decisions – like choosing what to wear and the
recreational activities they are willing to participate in – from decisions that might endanger them – like the choice
whether or not undergo specific medical treatments –. Healthcare decisions, which bring greater risks than day-to-day
decisions, can only be made by elders who are able to provide ‘informed consent’
The functioning of a patient correlates with cognitive deficits
. Research has shown that approximately 50% of
nursing home residents and 50% of elders over the age of 85 experience some cognitive impairment
9, 10
. For example,
when they suffer from neurological and psychiatric illnesses like dementia. Dementia is a progressive and (still) incurable
syndrome which is characterized by the development of cognitive deficits (e.g. decline in memory functioning and
language perception). Their ability to think rationally and reflect does not disappear instantly; it involves a gradual
decline in cognitive functioning
. The number of elders suffering from dementia is rapidly increasing. Estimations imply
that circa 81 million people will be affected with dementia in 2040
12, 13
. The risk to develop dementia does increase with
. To determine whether a person is mentally incompetent depends on the individual circumstances. Accordingly, a
diagnosis of dementia does not define the capacity of a patient and does not automatically mean that this person is
incompetent to make healthcare decisions


1.1 ‘Competence’ in statutory law
The concept of competence in healthcare decision making has been point of discussion for numerous legislations.
Medical care providers in the Netherlands need to abide the rules from the Medical Treatment Agreements Act (WGBO)
of the Dutch Civil Code. Article 7:465 gives a legal representation of incompetent elderly patients. It defines that
“patients have no legal capacity to act for themselves when they cannot be regarded as being capable of making a
reasonable appreciation of his interests in the matter”. In Dutch law there is no standard for competence determination.
The Explanatory Memorandum
of the WGBO state that whether or not an individual has the capacity to understand,
make a decision and take responsibility for the consequences of the decision is a clinical determination. Furthermore,
who has to make a decision about the capacity of an elderly patient depends on a particular situation. However, most of
the times it will be the physician or healthcare provider of the patient
. Another definition of ‘competence’ is given in
Act 169 of 2006 of Pennsylvania: “A condition in which an individual, when provided appropriate medical information,
communication supports and technical assistance, is documented by a healthcare provider to do all of the following: (1)
understand the potential material benefits, risks and alternatives involved in a specific proposed health care decision; (2)
make that health care decision on his own behalf; and (3) communicate that health care decision to any other person”
So, elderly patients need to demonstrate their ability to think rationally, their ability to use information in a logic rational
manner to get to a decision, and their ability to reflect the decision
. This definition is a bit vaster than the definition in
Dutch law. Still statutory law does not extensively regulate the criteria. Every patient has different characteristics, so for
every patient they need to consider whether or not a patient is competent to make healthcare decisions.

1.2 ‘Competence’ in medical decision making literature
Also in literature there is no clear agreement about the criteria of competence. In 2007 the governmental committee of
the Netherlands published a report with instructions on competence of medical decision making. In this report they
describe that a patient is competent when he show his capacity to understand provided information about e.g. his health
state and treatment, developments in examination and he needs to realize what the expected consequences are in different
. This corresponds with the idea of ‘informed consent’.
Appelbaum and Grisso
developed four components of competence based on standards in American case law (Table
1). The first component constitutes the ability of a patient to communicate about a treatment choice. The shown ability to
understand the relevant information makes up the second component. The third component contains the ability to
recognize a certain situation and the coherent consequences. The last component constitutes the ability of manipulating
information in a rational way. In accordance, a physician should speak with the elderly patient about information that is
important for this person to make an informed decision. The knowledge should be provided in way that the patient
understands it and is able to use this information. The patient should consider the benefits and risks of its choice.
Appelbaum and Grisso defend that in this way a patient is able to make an intentional and informed decision. Likewise,
letting the elderly patient repeat and discuss the information could test his understanding of the information the physician
has given.

Table 1: Components of competence of Appelbaum and Grisso
Component Patient’s task Approach physician
Understanding Ability to explain a treatment choice Discuss the preferred treatment
Communication Ability to show understanding of relevant information by
information recall and discussion of probabilities

Ask the patient to rephrase their
Appreciation Ability to recognize certain situations and coherent
consequences: identify disease, routes for treatment and
related possible outcomes
Question the disease, treatment and
possible outcomes
Rationalization Ability of using information in a rational way: consideration
of risks and benefits
Ask the patient to compare the risks
and benefits of the possible

According to Van de Klippe there are six approaches to determine competence: (1) the patient’s ability to make and
express a preference; (2) the patient’s decision need to be rational or acceptable in the assessor’s view; (3) the patient’s

reason for taking a certain decision; (4) the patient’s ability to understand relevant information; (5) the extent to which
the patient has actually understood this information; and (6) the patient’s appreciation of his condition and health
situation20. As there is no consensus about the criteria of competence, the assessor need to determine which approaches
to use under what circumstances.

2. Advance directives

Loss of ability can have significant impact on family members, regardless of the diagnosis of a patient. Making
decisions for a family member who is not competent is one of the most problematic challenges for families to face.
Families need to make choices between conflicting care preferences
. To separate the needs and preferences of the
patient from those of the family members is a stressful challenging task. Advance directives in medical care can guide the
medical decisions when elders become incompetent. In this way the elderly patient’s autonomy and dignity can be
ensured when he or she becomes incapacitated and is incapable to make healthcare decisions. Then the decision is
consistent with the patients’ wishes. An advance healthcare directive refers to documents in which someone can describe
preferences for healthcare decisions. Some intend to select an individual to make decisions on the incompetent patient’s
behalf, while others give specific guidelines under what conditions certain kind of medical care needs should be provided
or withheld

2.1 Definition of advance directives
In Act 169 of Pennsylvania an advance health care directive is defined as “a health care power of attorney, living will
or a written combination of a health care power of attorney and living will”
. A living will expresses the wishes of the
so-called principal who becomes incompetent and has an end-of-life condition or is permanent unconscious. A physician
must determine this. Generally people set out different end-of-life conditions referring to what kind of care they might (or
might not) wish in a specific situation. In a living will it is not necessary to select a health care agent to make decisions
This in contrast to a ‘health care power of attorney’ in which the principal selects health care agent(s) to make decisions
on his behalf when he becomes incompetent. The health care power of attorney can relate to every healthcare decision
except the end of life condition (like in the case of a living will)
. In Pennsylvania institutions are required – since the
implementation of the Patient Self Determination Act – to inform patients of their right to participate in medical decision
making and make an advance directive. In the United States, most states recognize advance directives.

2.2 Role of advance directives
Advance directives are beneficial for shared decision making in elder care because they prompt elders, their
physicians, and their caregivers to consider and discuss desired care procedures surrounding the loss of competence or
end of life. It is important, however, to recognize the limitations of advanced directives in regards to: completion,
implementation, and underlying assumptions. If advance directives are approached with a realistic understanding of the
uncertainties that develop near the end of life—then they can provide useful guidance and discussion about care decisions
for elders, physicians and their families.

3. Criticisms of advance directives

Supporters of advance directives praise its ability to 1) respect the autonomy and dignity of the elder person in
regards to end of life decisions and 2) increase cost efficiency by avoiding unwanted and ineffective end-of-life
. The increased prevalence of advance directives after the implementation of the Patient Self Determination
Act (1990) has led to increased criticism of its perceived benefits. Perkins (2007) argues that advance directives promise
a concept that is fundamentally flawed, “more control over future care than is possible”
. Criticisms of advance
directives fall under three major categories: completion, implementation, and flawed underlying assumptions.

3.1 Completion
Problems of validity arise during the completion of advance directives. Even after consultation with their doctor,
many patients do not understand all of the implications of their medical directives. Perkins uses the example of patients
who request “do-not resuscitate” status may not know that some surgeons refuse to operate on patients with this status
Secondly, patient’s treatment preferences and relationships may change over time. As their age or illness progresses their

attitudes toward treatment options and relationships their proxy may change after the initial signing of an advance
directive, leading to the possibility for future conflict in decision making.

3.2 Implementation
Implementation problems with advance directives center on accessibility and compliance. Inaccessibility to an
advance directive is a simple problem with many complex implications. Very few signers carry their advance directive
with them, and often times the directive is not on file when a medical crisis occurs. This leaves physicians and family
members liable for the life-or-death decisions facing the incapacitated elder, and in these circumstances the advanced
directive is usually ignored. Secondly, proxy decision making in the presence of an advance directive is often carried out
in a high-stress and emotionally charged environment. Conflicting interests between the elder and the family or caregiver
can lead to proxies, “confusing their own or other’s interests with the patient’s interest”. It is not hard to imagine that
loved one chosen as a proxy would agree to the wishes of an elders care directive at the time of signing in a primary care
physicians office, but may respond much differently at the time of crisis. This problem of compliance is also a problem
for physicians. Physicians face liability for the patient’s life, and may be compelled to act outside of an advance directive
when they question “whether the circumstances for invoking an advance directive have materialized”

State and national laws providing incentives for compliance with advance directives do appear to have a significant
impact on end-of-life care. Kressler and Mclellan (2003) found that elder persons in U.S. states that enforced compliance
with advance directives had a significantly reduced chance of dying in an acute care facility than states that did not
enforce directive compliance
. However, they found that across all levels of enforced compliance—advance directives
did not significantly reduce medical expenditures at the end of life. Their finding deflates the “cost-effectiveness”
argument of proponents of advance directives.

3.3 Fundamental assumptions
Finally, critics of advanced directives question the strength of the underlying assumptions that promote the creation of
these directives. The first assumption is the most simple, and perhaps the most significant. It is the assumption that
people think ahead of time about their end-of-life care. Death is one of the most unsettling topics of our human existence,
and it is difficult to consider specific care requests with yourself and your loved ones. People paint broad pictures of
maintaining dignity and autonomy at the time of death, but are not ready to outline the medical directives to reach this
outcome. Secondly, there is the assumption that advance directives will be carried out with certainty. End-of-life care is a
period of time characterized by high levels of uncertainty and emotion. The limitations of advance directives accounting
for uncertainty should be recognized at the time of their creation

4. Family role in medical decision making

Advance directives can play an important role in decision making for elder care. However, advance directives only
become significant decision structures at the point in which the elder becomes incompetent or incapacitated. Throughout
the majority of the caring period, decision making is a shared experience between the elder and their family caregiver.
The caregiving relationship can provide enormous satisfaction for both the caregiver and the elder, but it poses unique
challenges for the caregiver who often juggle their own family, career, and multiple caregiving roles
27, 28

4.1 Caregiver’s burden
Family caregivers assist in streamlining care for elders by communicating with healthcare professionals, helping to
avoid medical errors and inefficient care, and navigating the complex health insurance system
. They often drive or
accompany the person receiving care to doctor’s appointment and communicate the progression of symptoms to multiple
health care professionals. Family caregivers encourage treatment compliance and mange the medication prescriptions and
refills for the aging person
. In addition to their role as the elder person’s health care advocate, they provide hours of
physical, social, and emotional support for their aging loved one. In the United States and in the Netherlands the “average
caregiver” is a 50 year old woman who works outside the home.
31, 32
The strain of multiple life roles and the time and
energy associated with caregiving creates an inherent tension between the needs of the person being cared for and the
needs of the caregiver.

Magazines such as, Caring Today, focus on issues that caregivers face during their caring relationship
. A common
theme addresses the guilt associated with making decisions that are a compromise between the optimal care for the elder
person and the needs in the life of the caregiver. Osse, Vernooij-Dassen, Schadé, and Grol (2006) did a study which
categorized the “Top 20” needs and problems faced by caregivers in palliative care. Fear of the future of the patient’s
disease, fatigue, depression, and anxiety topped the list of problems faced by the majority of caregivers in the
Netherlands. A similar list can be expected in the United States. Topping the list of needs was a desire for more
professional information about the signs and progression of disease of the elder, and better coping mechanisms for future
. The need to address challenges unique to the caregiver in the decision making process has led to the
creation of support programs for caregivers.
There is growing evidence that the most effective types of support interventions focus on the needs of both the patient
and the caregiver. Vernooij-Dassen et al. (2000) finds evidence supporting the effectiveness individualized programs on
the caregiver’s self perception of their competence in care. Services such as counseling and personal assistance in
problem solving can benefit the caregiver in their decision making role. Routine emotional support through active
listening and discussion of the caregiving role and sense of burden can also have positive effects on the perceived level of
competence of the caregiver
. Finally, there has also been support for the effectiveness of Self-Management Programs
(SMPs) on improving the quality of life for both caregivers and the elder person receiving care. SMPs promotes the elder
person and their family to be physically, mentally, and socially active—and allows the patient’s family to select the most
relevant topics to provide assistance for the caregiving role
“For the large majority of caregivers, 85%, the feeling of satisfaction outweighs the disadvantages” of the caregiving
34, 36
. The family’s role in care is an important and beneficial influence on the outcome of elder care. However, the
caregiving burden and the stresses associated with medical decision making have significant impacts on the mental and
physical well-being of the caregiver. It is important to recognize these impacts on elderly care and the important role of
support programs for caregivers as part of the family’s role in elder care.

Potential uncertainties can be reduced by introducing benefits of advance directives. In this way the elderly patient’s
autonomy and dignity can be ensured when he or she becomes incapacitated and is incapable to make healthcare
decisions. When creating advance directives for end-of-life care decisions, it is important to recognize their limitations in
regards to completion, implementation, and underlying assumptions.
It is also important to recognize the cultural and legal differences that exist in end-of-life decision-making in the
United States and the Netherlands. Statutory law in the United States and the Netherlands each define a level of patient
competency needed to make medical decisions. Standards of competency are more clearly defined in U.S. law, but
current statutory law does not extensively regulate the criteria for competence. In both countries this is done at the
clinical level. The cultural differences in end-of-life decision-making must also be noted. For example, euthanasia is
legalized in the Netherlands and a competent elder can make this decision to die with dignity if they are experiencing
pain at the end-of-life. In most U.S. states, all types of euthanasia are illegal and it is generally not perceived as an option
in end-of life care. Differences in legal definitions of competency and care options near the end-of-life create different
environments in the United States and the Netherlands within which elder care decisions are made.
Advance directives can be a useful tool to begin the difficult discussion of end-of-life care preferences among family
members and primary care physicians. However, they should be considered one planning tool as part of a larger
discussion that stresses honest communication and emotional preparedness for stressful end-of-life decision making.
Finally, while advance directives address the end-of-life, which is the most stressful and emotional period of elder care
decision making, the tension associated with the decision making role of the caregiver stretches throughout the entire
period of care. Therefore, it is important to address the issue of caregiver’s burden and programs and practices that may
improve the caring experience of both the caregiver and the elder person receiving care.


1. Vernooij-Dassen M, Leatherman S, Rikkert MO. Quality of care in frail older people: the fragile balance between receiving and giving. BMJ.
2. Legare F, Stacey D, Pouliot S, Gauvin FP, Desroches S, Kryworuchko J, et al. Interprofessionalism and shared decision-making in primary care: a
stepwise approach towards a new model. Journal of interprofessional care. 2011;25(1):18-25.
3. Prognose bevolking op 1 januari; leeftijd en geslacht. Den Haag: Centraal Bureau voor de Statistiek 2010.
4. van Duin C, Garssen J. Bevolkingsprognose 2010-2060: sterkere vergrijzing, langere levensduur. Den Haag: Centraal Bureau voor de Statistiek,
5. Welie SP, Dute J, Nys H, van Wijmen FC. Patient incompetence and substitute decision-making: an analysis of the role of the health care
professional in Dutch law. Health policy. 2005;73(1):21-40.
6. Simpson C. Decision-making capacity and informed consent to participate in research by cognitively impaired individuals. Applied nursing
research : ANR. 2010;23(4):221-6.
7. Decision-making by elderly people with intellectual disabilities: the importance of self-determination. Pennsylvania Developmental Disabilities
Council 2012.
8. Marson DC, Chatterjee A, Ingram KK, Harrell LE. Toward a neurologic model of competency: Cognitive predictors of capacity to consent in
Alzheimer's disease using three different legal standards. Neurology. 1996;46(3):666-72.
9. Evans DA. Estimated prevalence of Alzheimer's disease in the United States. The Milbank quarterly. 1990;68(2):267-89.
10. Morris JN, Fries BE, Mehr DR, Hawes C, Phillips C, Mor V, et al. MDS Cognitive Performance Scale. Journal of gerontology. 1994;49(4):M174-
11. Verbeek H. Dementia care: an evaluation of small-scale, homelike care environments: Maastricht University; 2011.
12. Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi consensus study. Lancet.
13. Wimo A, Winblad B, Aguero-Torres H, von Strauss E. The magnitude of dementia occurrence in the world. Alzheimer disease and associated
disorders. 2003;17(2):63-7.
14. Dementie. Den Haag: Gezondheidsraad, 2012.
15. Kamerstukken II 1990/1991. 1991 Contract No.: 21 561.
16. Handreiking voor de beoordeling van wilsbekaamheid. Den Haag: Ministerie van Justitie, 2007.
17. Section 5422, Act 169, (2006).
18. Consent and capacity to make decisions. Pennsylvania Developmental Disabilities Council 2012.
19. Appelbaum PS, Grisso T. Assessing patients' capacities to consent to treatment. The New England journal of medicine. 1988;319(25):1635-8.
20. Van de Klippe CJ. Wilsonbekwaamheid in de psychiatrie: zes benaderingen. Maandblad Geestelijke Volksgezondheid. 1990(2):16.
21. Whitlatch C. Informal caregivers: communication and decision making. The American journal of nursing. 2008;108(9 Suppl):73-7; quiz 7.
22. Hardwig J. What about the Family? Hastings Center Report. 1990(20):6.
23. Section 5441-5446, Act 169 (2006).
24. Section 5451-5465, Act 169, (2006).
25. Kessler DP, Mclellan MB. Advance Directives and Medical Treatment at the End of Life. Journal of Health Economics 2004;23(1):17.
26. Perkins HS. Controlling death: the false promise of advance directives. Annals of internal medicine. 2007;147(1):51-7.
27. Coleman EA, Parry C, Chalmers S, Min SJ. The care transitions intervention: results of a randomized controlled trial. Archives of internal
medicine. 2006;166(17):1822-8.
28. Section for Enhancing Geriatric U, Expertise Among S, Medical Specialists AGS. Retooling for an aging America: building the healthcare
workforce. A white paper regarding implementation of recommendation 4.2 of this Institute of Medicine Report of April 14, 2008, that "All
licensure, certification and maintenance of certification for healthcare professionals should include demonstration of compet ence in care of
older adults as a criterion.". Journal of the American Geriatrics Society. 2011;59(8):1537-9.
29. Mitnick S, Leffler C, Hood VL, American College of Physicians Ethics P, Human Rights C. Family caregivers, patients and physi cians: ethical
guidance to optimize relationships. Journal of general internal medicine. 2010;25(3):255-60.
30. Potential Roles for the Family Caregiver. National Cancer Institute 2013.
31. Hunt GG, Barrett L, Lutz S. Caregiving in the U.S. 2009. National Alliance for Caregiving. 2009:1.
32. Oudijk D. the Spotlight: Informal Care in the Netherlands. Den Haag: Netherlands Institute for Social Research; 2010.
33. Hosansky A. Caring Today [Internet]2008.
34. Osse BH, Vernooij-Dassen MJ, Schade E, Grol RP. Problems experienced by the informal caregivers of cancer patients and their needs for support.
Cancer nursing. 2006;29(5):378-88; quiz 89-90.
35. Vernooij-Dassen M, Lamers C, Bor J, Felling A, Grol R. Prognostic factors of effectiveness of a support program for caregivers of dementia
patients. International journal of aging & human development. 2000;51(4):259-74.
36. Laakkonen ML, Holtta EH, Savikko N, Strandberg TE, Suominen M, Pitkala KH. Psychosocial group intervention to enhance self-management
skills of people with dementia and their caregivers: study protocol for a randomized controlled trial. Trials. 2012;13:133.


Personalized Medicine in Elder Care
An International Assessment of Scientific Advances and Ethical Dilemmas in Genomics and Pharmacogenomics

Mathijs F. J. Mabesoone - Radboud University Nijmegen
Laura J. Bruce - Pennsylvania State University

Introduction: Personalized medicine is a medical model that promotes the customization of a patient’s healthcare via
innovative diagnostic tools and therapies. This paper seeks to review the current state of personalized medicine for elders
within the person-centered healthcare model. We evaluate advances in the application of clinical genomics, the
challenges associated with these advances, and the relevance of these developments to elder care in the Netherlands and
the United States.
Methods: A literature review was conducted using PubMed, Google Scholar, Scopus, and Web of Knowledge
databases. Policy and reimbursement information was identified using government websites.
Results: The role of genomics in medicine is to promote highly efficient care and to tailor treatment options by using
genotyping as a diagnostic tool. In particular, pharmacogenomics involves the use of genetic information to avoid the
incidence of adverse drug reactions (ADRs). These applications can be useful tools for elder patients, who are often
subject to comorbidities, variability in drug metabolism when compared to the general population, and highly
heterogeneous conditions such as cancer, Parkinson’s disease, and Alzheimer’s disease.
Conclusions: Assessments on cost-effectiveness and the price per quality-adjusted life year (QALY) gained for
elders are highly variable and reliable data is lacking. Incorporating genomics into clinical medicine might also increase
the amount of orphan genotype populations. The implementation of genomics into clinical medical practice gives rise to
dilemmas related to discrimination, privacy, and autonomy. Using genomic data to evaluate drug metabolism and to
combat cancer is relevant for the elder population, but due to the nature of most genetically-linked conditions, other
applications are more suited for younger patients at present. In response, public policy can be shaped in a way that guides
clinical genomics towards a feasible application that identifies and effectively treats genetic subpopulations with minimal
issues. Although the path to achieving these policy guidelines will vary by country, general considerations can be made.


Globally, individuals aged 65 and older are the most rapidly growing age group. Elders exhibit a high incidence of
chronic disease, multi-morbidity, and the need for long-term care, all of which are expensive to address
. Consequently,
the growing number of elders will continue to pressure healthcare systems to equilibrate to the optimal balance between
quality, access, and cost. Healthcare professionals must accommodate to this changing demographic in order to avoid
issues pertaining to financing and patient satisfaction
. At the same time, the United States and the Netherlands are in the
process of transitioning to a person-centered care model. This model emphasizes a focus on individual patient needs and
expectations in both treatment and delivery. Although this model has been promoted for several decades, it has not yet
been implemented in a form that maximizes its potential. A lack of attention to patient preferences is evident, especially
when considering innovative treatment options
One essential aspect of the person-centered model is the notion of personalized medicine. Originally, personalized
medicine simply denoted the use of genetic screening to develop customized patient treatment plans via improved
4, 5
. This was made possible largely through the Human Genome Project, which was completed in 2003 and has
mapped the entire human genome, shedding light on how our genes influence our physiology
. However, since then, the
term “personalized medicine” has been expanded to denote the customization of all aspects of a patient’s healthcare,
including all medical practices and especially the ethical decision-making surrounding the use of genetic information
Nonetheless, clinical genomics is a relatively new technology that has the potential to greatly increase the efficacy of
medical treatments through the use of genotyping. Understanding the genetic makeup of patients can allow healthcare
providers to better tailor treatment options and avoid of adverse drug reactions via pharmacogenomics.
In particular, the idea of genomics in personalized medicine is suspected to be increasingly relevant to elder care in
the clinical setting, as disease in the elderly is often heterogeneous and comorbidities are increasingly common in both
the Netherlands and the United States
7, 8

Aim of this study
The aim of this paper is to review the current state of technology that supports the notion of personalized medicine
and to discern if these developments are significantly relevant in elder care. Accordingly, this paper also seeks to
identify the most important and urgent issues that arise in personalized medicine for elders, with regard to cost-
effectiveness, discrimination, confidentiality, and autonomy. These dilemmas must be considered as technologies in
personalized medicine are implemented, since progress and eventual policy recommendations cannot be achieved
without a scientific and ethical evaluation.

Relevant literature was identified and reviewed using the online search databases PubMed, Google Scholar, Scopus,
and Web of Knowledge. Search terms included, but were not limited to “genomics”, “pharmacogenomics”,
“implementation”, “cost-effectiveness”, “cost-effectiveness analysis”, “elder care”, “confidentiality”, “autonomy”,
“personalized medicine”, “person-centered”, and “healthcare”. Furthermore, cited references in literature identified in the
databases also served as source of information. Relevant governmental and insurance information was identified using
government website resources.

The advent of genomics in medicine is quite recent. Although there are some examples of genomics in the clinical
setting, it is still in a developmental stage. Nonetheless, the field has rapidly expanded in recent years, necessitating an
evaluation of the following questions: where does the current state of affairs put us, and what has the scientific
community achieved so far? Further, when considering the implementation of clinical genomics for elders, certain
distinctions in clinical need between elders and the general population must be noted.

Genomics: Current State of Affairs
The sequencing an individual’s entire genome currently costs about $3000. In future, prices are expected to decrease
while data quality is expected to improve
. Thus, genome sequencing is relatively affordable for consumers and enables
genomics to be used as an important diagnostic tool when considering different treatment options. More practically,
exomics, the process of sequencing only an individual’s exome of protein-coding DNA, yields valuable prospects for

future clinical medicine
. Exomics is advantageous in that it provides a smaller amount of data and involves a lower cost
of sequencing than genomics, which makes it more accessible for large-scale applications
Even more specifically, the sequencing of an individual’s single nucleotide polymorphisms (SNPs), which are genetic
polymorphisms of interest, can be useful. These polymorphisms consist of a variation in only one base pair between
nitrogenous bases in DNA. For instance, one type of SNP occurs when an adenine-thymine pair is converted to a
guanine-cytosine pair
. Since these variations occur reasonably frequently in a population, they are not automatically
considered to be mutations. While some SNPs do not cause any changes in an individual’s phenotype, due to codon
degeneracy in the genetic code, other SNPs may be linked to recognizable traits or serious diseases
, including cystic
fibrosis. Due to the low genetic complexity of such diseases, it is easy to identify their genetic origin via SNPs.
Pharmacogenomics is the analysis of a patient’s genetic makeup with reference to genetic variability in drug
. This strategy can be valuable for tailoring dosages of selected pharmaceuticals to an individual
. Clinically,
the treatment of HER-2 positive tumors is a classic example of pharmacogenomics
. Patients who are found to exhibit an
overexpression of HER-2 are administered the monoclonal antibody trastuzumab, which can drastically improve
outcomes. Another well-established example of pharmacogenomics is related to the thiopurine methyltransferase gene
Patients with certain polymorphisms of this gene are at higher risk of hematopoietic toxicity and will therefore have a
specialized treatment plan. Thus, adverse drug reactions (ADRs) can be prevented with the use of pharmacogenomics.
This is of paramount importance, because ADRs are the sixth leading cause of death in the US
. Additionally, over $100
billion can be saved by providing patients with the appropriate dosages of the appropriate pharmaceuticals in the United
States alone
. This would serve as a significant reduction in the total US healthcare expenditures, which were reported as
$2.6 trillion in 2010
. To some extent, SNPs can also affect drug metabolism
17, 18
, which can make them relevant
markers in pharmacogenomics. However, the effect of SNPs on drug metabolism is not always very significant
19, 20
, so
although SNPs can be suitable in the search for genetic origins of certain diseases, their importance for
pharmacogenomics is limited.
The downside to clinical genomics at any level is that the relation between genetic information and manifest diseases
or traits must be known. In the field of oncology, researchers are continually investigating the complex relationship
between specific cancers and their genetic origins
18, 19, 21
. This has enabled genomics to serve as a useful tool for the
clinical oncologist. In fact, this strategy is well-established in clinical practice and as a result, biotechnology companies
are increasingly designing their clinical trials in oncology to include biomarker tests
. Yet for many diseases, including
Alzheimer’s disease (AD)
and Parkinson’s disease
, a strong relationship between genetic makeup and disease is not
currently known. It can be expected that advances in genomics, sequencing techniques, and comparative genome
analyses will elucidate relations between genetic markers and disease patterns
. It is debatable, however, whether this
method will succeed for all diseases.
In AD, it is known that the messenger RNA, which is translated from the DNA, undergoes significant post-
translational modifications
. Because these modifications necessitate the use of other “omics”-techniques, such as
transcriptomics and proteomics, transferring the genetic data into clinically useful information becomes even more
complicated. With the increased computing power that will most likely be available in the near future, these comparative
genome analyses (CGA) and other “omics” analyses can be done in a high-throughput manner. This will likely yield
valuable information, although it is difficult to predict. Besides post-translational modifications, environmental
influences in the life of the patient should be considered when prescribing drugs. For instance, there are plenty of
environmental factors known to affect drug metabolism. One example is the consumption of grapefruit juice, which can
drastically alter the metabolism of a wide variety of drugs
26, 27

Differences Between Elders and the General Population
The ratio between the elderly, non-working and the younger, working population in the European Union is expected
to double between 2007 and 2060
. In the US, more than 30% of total health expenditures are spent by people aged 55
and older
, and the total elder population is also expected to double by 2060
. Thus, the differences in drug metabolism
between elderly people and the general population are important to consider due to the relevance in pharmacogenomics.
The main reason for differences in drug response and metabolism between elders and the younger, general population is
decreased renal clearance in elders, which increases drug half-life
. Also, increases in body fat percentage and decreases
in clearance by the liver in elders account for a significant part of the differences
32, 33
Currently, in about 25 to 40 percent of the clinical trials that are conducted, subjects are omitted from the trials due to
age extremities
34, 35
. This is highly undesirable when thinking about the elder population, because certain pharmaceutical

types are frequently prescribed to elders, such as antithrombotics and coagulants, and these drugs may have unknown
clinical effects in the elder population. For example, it is known that β-blockers do not alleviate hypertension as
effectively in elders as they do in younger patients
. This example not only illustrates that different dosages are required
for elderly in comparison with the general population, but it also highlights that toxicological effects that are not
observed in younger test subjects might occur in elders
33, 37

The implementation of genomics into clinical medical practice for elders raises many questions. First, assessments
on cost-effectiveness and the price per quality-adjusted life year (QALY) gained for elders through the application of
genomics must be considered. Second, incorporating genomics into clinical medicine might also increase the amount of
orphan genotype populations. Finally, applying genomics into clinical practice for elders gives rise to dilemmas related
to discrimination, patient confidentiality, and autonomy. The extent to which clinical genomics is relevant to elders is
also debatable. In response, public policy can be shaped in a way that guides this medical technology towards a feasible
application with minimal issues. Although the path to achieving these policy guidelines will vary from country to
country, general considerations can be made.

In the transition phase from classical, non-personalized medicine towards the personalized system, which takes
genetic information into account, elders are a special group to consider. Due to their age, they will, on average, have
fewer benefits from these novel treatments. However, are the costs associated with revealing their full genetic profiles
and interpreting the genetic data proportional to the benefits that personalized medicine may bring? For elders of high
age, or those with exceedingly poor prognoses, these efforts will not be cost-effective. When considering the problem
from a strictly economical viewpoint, examining pharmacogenomics via cost-effectiveness studies for a wide array of
relevant diseases can provide answers.
When assessing cost-effectiveness, the price per quality-adjusted life year (QALY) gained is an important parameter
to address. The costs per QALY gained for several pharmacogenomics treatments can vary greatly when different
diseases are considered
. For instance, thiopurine methyltransferase genotyping in acute lymphoblastic leukemia has a
cost per gained QALY of only €2100, which is relatively low and therefore desirable
. However, the costs per gained
life-year are not as low for all treatments. This was exemplified by a discussion that arose in the Netherlands in 2012,
where a report by the College of Health Insurers (CVZ) advised against reimbursement of treatments for Pompe’s
. For patients suffering from the non-classical variant of this disease, the cost per gained QALY was found to be
€15 million, and was deemed excessive. On the other hand, the cost per gained QALY for the classical variant of the
disease was found to be between €0.3 and €0.9 million, and was considered acceptable.
As benchmark for the costs per gained QALY, renal dialysis treatments are often used as a reference point when
assessing the cost-effectiveness of new technologies
. However, the representivity of this disease as a benchmark is
42, 43
. Determinations of the acceptable value of a QALY range between $100,000 and $265,000
41, 42, 44, 45
However, treatments with a cost per gained QALY of more than the acceptable value per QALY have not always been
omitted from healthcare plans
, as exemplified by the aforementioned case of Pompe’s disease. As long as the average
cost-effectiveness is below the acceptable level, the treatment can be justified for use in the population. Using a
personalized approach to medicine makes this consideration more important
, because due to its individual nature,
personalized medicine also implies personalized cost-effectiveness. This is evident in the variation of effective dosages
of β-blockers in patients with hypertension. Some patients require a higher dosage and therefore require larger costs for
the same health gain. This requires a looser reimbursement policy from insurers, because they will have to accept a larger
spread in reimbursement costs for similar treatments. A stringent stance by insurers, on the other hand, might prevent the
implementation of pharmacogenomics for the sake of innovation at the expense of a more cost-effective, traditional
In order to improve the development of genetic tests and pharmacogenomics, explicit regulation guidelines regarding
cost-effectiveness can be beneficial, since this will decrease the amount of uncertainty that pharmaceutical companies
will face in reimbursement
. Currently, cost-effectiveness analyses for pharmacogenomics are poor in quality
, and
there is little consistency in approach between studies
. A literature survey on relevant keywords yielded no scientific
literature that investigates the cost-effectiveness of any pharmacogenomics approaches for elders. Thus, this might be a

focus for future cost-effectiveness studies, since elders should be considered distinct from the general population with
regard to their biological features.
In the Netherlands, hereditary tests, which include genome and exome sequencing, are reimbursed by the obligatory
basic health insurance. However, this is at the expense of the excess, which is standard for all insurances. Genetic tests
can only be done after a referral by a medical specialist
, and can only be performed in clinical genetic centers, which
are assigned by the government
. In the US, preventive genetic tests are not covered by Medicare and Medicaid.
Diagnostic genetic screenings and standard newborn screenings, however, can be reimbursed

Orphan Genotype Status and Drug Development
Due to the individualized nature of the technology, the implementation of pharmacogenomics might lead to an
increase in small groups of individuals that are not eligible for commonly available treatment options, and for whom only
more expensive treatment options are effective. Accordingly, the debate regarding the value of a QALY must be
expanded to include a consideration of these groups. As a consequence of the increase in patient variability, the
conditions for identifying orphan diseases and statuses should also be reconsidered
. Previously, to prevent a total
neglect of patients suffering from orphan diseases, governments have enrolled subsidies to encourage research and
development for those diseases
. Small genetic subpopulations will likely warrant similar support.
Clinical trials for new drug options stemming from research in pharmacogenomics must also be subject to policy-
based regulation in order to ensure that these treatments can adequately serve minorities, including the elderly and those
with uncommon diseases, or “orphan genotypes”
. Grants provided through organizations such as the National Institutes
of Health in the US can ensure that research is supporting the development of drugs serving orphan genotypes. This
expectation is reasonable, since the same effect was observed in the United States with the Orphan Drug Act of 1983 and
the Rare Diseases Act of 2002
53, 54
. Further, incorporating minority groups (age-based, ethnicity-based, etc.) in clinical
trials is important to increase representation of the entire population
and to enhance the understanding of drug effects,
as these factors can lead to variability in response to treatment
In drug development related to pharmacogenomics, the molecular cause of the disease and genetic link must known
or properly estimated. In the case of amyotrophic lateral sclerosis (ALS) drug development, for instance, a common
concern is that desired therapeutic effects are absent in clinical trials, although they are observed in animal studies
. In
preclinical studies, model animals are often bred so that the disease of interest is introduced by a single genetic
. Yet, this is not the case in a natural population, where multiple genetic mutations can manifest as the
same disease. Therefore, to improve the efficacy of clinical trials, it is of utmost importance that the specific cause of the
disease, which is engineered into the test animals, is sufficiently present in the patient population.
Even after new treatment options progress through the clinical trial stage, economic discrimination may still persist.
Although prices may decrease with time, the high cost of current treatments in pharmacogenomics has the potential to
exclude those of a lower socioeconomic class, as they may be unable to afford the expensive, innovative treatments. This
is more of an issue in healthcare systems where insurance companies may be reluctant to cover new therapies or the tests
needed to prescribe certain drugs, leaving patients with enormous out-of-pocket costs
. In countries with established
national health insurance programs, it is unclear how these expensive treatments will fit into the healthcare budget. The
increase in patient variability causes an increase in parties that are eligible for subsidies and other forms of financial or
regulatory support in drug development, which can make additional claims on the healthcare systems. Hence,
pharmacogenomics drugs and tests must be critically evaluated with regard to their cost-effectiveness.

Genomics and Patient Confidentiality
Patient confidentiality is of utmost importance when evaluating the implementation of new medical technologies such
as genomics
. In order to maintain privacy ideals despite the vast amounts of information provided by genetic screening,
specific biomarkers that do not reveal secondary information can be selected, and specialized coding techniques can be
used to obtain only the information that is needed in determining a certain treatment type
. This can be monitored via
updates to already existing medical privacy legislation as found in The Affordable Care Act (ACA), and more
specifically, ACA provisions regarding The Health Insurance Portability and Accountability Act (HIPAA) in the United
States. These policies serve to ensure that medical records are only available to authorized physicians and patients
Medical caregivers can also be provided with training that highlights the confidentiality and analysis of genetic
information, so that healthcare professionals are aware of how to interpret and handle such information

On a higher level, the discrimination that may arise from access to patient genetic information must be eliminated in
order for clinical genomics to reach its full potential. For instance, health insurance systems could be revised to
incorporate group-based insurance with a system for risk-sharing that does not discriminate patients on the basis of
. Such a system would balance access to patient genetic information with a social interest in universal care. Other
nationally-based healthcare systems that provide universal access can also accomplish this if equal care is provided to all
individuals, regardless of their genetic risk
. For example, this is arranged in the Netherlands by obligating health
insurers to accept any application for a basic insurance, regardless of the medical profile of the applicant.
Importantly, the incorporation of genomics into medicine will depend highly on the ability of medical researchers to
access a large data set in order to perform comparative studies. Requesting informed consent from patients to allow their
exome to be sequenced for research purposes will enable more accurate analyses to be made when genomics are used for
. Studies have shown that upwards of ninety percent of patients will consent to their “anonymized genetic
information being used for research”, which leaves researchers hopeful
64, 65
. However, the situation becomes more
complicated if this anonymized information reveals a significant disease prognosis. Typically, the anonymized genetic
information cannot be used diagnostically, but in cases where a patient may be both willing to contribute anonymously to
research but also interested in the diagnostic information, a system allowing for varied levels of consent may be

Genomics and Patient Autonomy
Should a patient himself have full access to his or her genomic information? When a patient genome is sequenced to
gain information regarding specific, well-defined conditions, an extended risk profile can be constructed. Knowing these
details might alter the way that individuals live their lives, by affecting their psychosocial perceptions of themselves
. If
genetic screening reveals very high risks for high-impact diseases, the discussion on whether or not the patient should be
informed is rather straightforward. There is, however, a large grey area when addressing genetic information regarding
more minor mutations and subtle deviations in susceptibility for specific conditions. When addressing this dilemma,
consensus must arise in identifying situations in which patients are informed about their risk profiles and situations in
which they are not. Currently, in the Netherlands, doctors are obliged to inform patients of their health status
. In the
light of an increased availability of genomic sequencing in clinical practice, this legislation should be reviewed.
Importantly, knowledge of genetic makeup can not only affect individuals, but this information can also stream down to
their family members
. When someone is informed on his or her health risks, this reveals information about their
individual risk profile, but it can also reveal information about biological family members. This may compromise a
family member’s personal decision regarding knowledge of their genetic information.
Further questions arise when considering the impact of direct-to-consumer (DTC) genetic testing via companies such
as 23andMe. Independent of healthcare providers, these companies provide selective sequencing for customers at a low
cost, providing genotype information, as well as an interpretation of the data related to ancestry and health risk
. This
creates additional complications for integrating genomics with healthcare, as a disconnect between the patient and the
healthcare provider arises when a third-party is used as a source of genetic testing. The main complication is known as
misattributed equivalence, where the patient or physician considers the DTC genetic analysis to be as valid as it would be
if it had originated from a more formal research setting
. Consequently, many researchers are in favor of restricting or at
least regulating these DTC companies so that physicians and patients can make collaborative decisions regarding medical
. Still, some argue that even when considering genomics, patients are consumers with right to consult DTC
companies for genetic screening

Relevance to Elders
When considering the aforementioned technical developments and ethical concerns, it is important to evaluate the
relevance of clinical genomics for elders. For genetically-linked diseases that surface early in life, such as cystic fibrosis,
treatments based on a patient’s genotype are not entirely useful for the elder population because these conditions are
prevalent well before patients are considered to be elders. Yet in the field of oncology and in determining a patient’s
metabolic tendencies, clinical genomics is pertinent to elders because cancers and variability in drug metabolism can
afflict patients of any age
. Another factor to consider is the usefulness of genomics across a lifetime. Currently, for
elders that are nearing the end of life, it may not be practical to invest in whole genome or exome sequencing, since not
all of the available data can be interpreted
. In future, if more individuals consent to sequencing at a young age, the
accuracy and scope of interpretable genomic data will likely increase due to comparative analyses

At the same time, if patients undergo sequencing at a young age, this data will be useful throughout their lifetime,
which makes it quite cost-effective
. In other words, although there is currently an extended payoff time for investments
in genomics for improvement in elder care when compared to readily implementable measurements, today’s younger
generation will benefit from those investments when they become elders. Thus, genomics in personalized medicine is
not quite as useful in elders as it is in younger patients at this time, although it may be more useful in future. This is due
to the nature of genetically-linked diseases and concerns regarding cost-effectiveness. Yet, using genomic data to
evaluate drug metabolism and to combat cancer is relevant for the elder population.
Still, for those elders and members of the general population that can benefit from the incorporation of genetic data
into clinical practice, pharmacogenomics will not lead to a completely personalized drug prescription. Developing
effective, personalized drugs and implementing these drugs at a personal level is impractical
. Patients will more likely
be subdivided into genetic subgroups of the population which will form the basis for personalized treatments.

Scientific developments have enabled us to map the human genome with an increasing accuracy and decreasing cost.
As research further expands our understanding of interpersonal variation in drug susceptibility and metabolism,
healthcare providers can increase the quality of their care and further cut costs via clinical genomics and
pharmacogenomics. However, in the short-term, the largest issues in implementing pharmacogenomics are the lack of
knowledge and the high cost of developing personalized treatments. Contrary to most current medical practices, a
patient’s genetic makeup must be known for treatments in pharmacogenomics to be effective. The sequencing, analysis,
and storage of this data also require considerable efforts and will impose additional costs.
Although many technical possibilities exist, the ethical implications associated with these technologies can create a
bottleneck in their application, due to issues with discrimination, patient confidentiality, and patient autonomy. While it
is difficult to provide concrete solutions to all of the relevant ethical and political dilemmas, we have touched upon
several recommendations related to financing and the protection of elder patients. We further conclude that although
genomics can reduce healthcare costs and greatly improve health outcomes by lowering adverse drug reactions, it is
unrealistic to expect that these developments will lead to a fully personalized health system in which each patient
receives a tailored prescription. Personalized medicine will likely only be personalized in the sense that for certain
diseases or conditions, genetic subpopulations can be identified and can receive tailored treatment based on their
biological background. However, the problem of the “orphan genotype” subpopulations having expensive treatment
persists in this case.
Despite these general technical and ethical concerns, we have touched upon innovations in personalized medicine for
elders that can take place in the current medical practice. With the increasing elder population worldwide, the need to
tailor medication for this group rises, because elderly people are biologically unique from the general population.
However, clinical trials for new pharmaceuticals often do not fully take this group into account. Moreover, the current
clinical application of genomics in medicine may not be entirely relevant to the elder population, except in the field of
oncology and in pharmacogenomics.
Overall, while the technologies associated with personalized medicine are not extremely relevant to elders at this
time, there is huge potential for the healthcare system to be revolutionized by clinical genomics, which will affect future
generations, including elders. As medical conditions are better understood at the molecular level, genotyping will become
increasingly necessary for diagnosis and treatment. Currently, the implementation of genomics in clinical practice is
hindered not only by gaps in scientific advancements, but also in bridging the gap between science and society. A
system for obtaining consent for a patient’s genomic data must be streamlined by healthcare providers, and companies
that provide DTC genetic screening must be monitored in order to avoid misattributed equivalence. Therefore,
investments surrounding clinical genomics in elder care should focus on improving research initiatives, reevaluating
healthcare infrastructure, and revising legislation so that the benefits of personalized medicine can be maximized.


1. Mueller PS, Hook CC, Fleming KC. Ethical issues in geriatrics: a guide for clinicians. Mayo Clinical Proceedings. 2004;79:554-62.
2. Hajjar ER, Cafiero AC, Hanlon JT. Polypharmacy in elderly patients. The American Journal of Geriatric Pharmacotherapy. 2007;5:345-51.
3. Bergeson SC, Dean JD. A systems approach to patient-centered care. JAMA. 2006;296:2848-51.
4. Weston AD, Hood L. Systems Biology , Proteomics , and the Future of Health Care : Toward Predictive , Preventative , and Personalized Medicine
Introduction : Paradigm Changes in Health Care. Journal of Proteome Research. 2004;3:179-96.
5. van't Veer LJ, Bernards R. Enabling personalized cancer medicine through analysis of gene-expression patterns. Nature. 2008;452:564-70.
6. Crews KR, Hicks JK, Pui CH, Relling MV, Evans WE. Pharmacogenomics and individualized medicine: Translating science into practice. Clinical
Pharmacology and Therapeutics. 2012;92:467-75.
7. van Leersum NJ, Janssen-Heijnen MLG, Wouters MWJM, Rutten HJT, Coebergh JW, Tollenaar RAEM, et al. Increasing prevalence of
comorbidity in patients with colorectal cancer in the South of the Netherlands 1995-2010. International journal of cancer. 2013;132:2157-
8. Wolff JL, Starfield B, Anderson G. Prevalence, expenditures, and complications of multiple chronic conditions in the elderly. Archives of internal
medicine. 2002;162:2269-76.
9. Harper AR, Topol EJ. Pharmacogenomics in clinical practice and drug development. Nature biotechnology. 2012;30:1117-24.
10. Majewski J, Schwartzentruber J, Lalonde E, Montpetit A, Jabado N. What can exome sequencing do for you? Journal of Medical Genetics.
11. Initial sequencing and analysis of the human genome. International Human Genome Sequencing Consortium, 2001.
12. Brookes AJ. The essence of SNPs. Gene. 1999;234:177-86.
13. Brollo J, Curigliano G, Disalvatore D, Marrone BF, Criscitiello C, Bagnardi V, et al. Adjuvant trastuzumab in elderly with HER-2 positive breast
cancer: a systematic review of randomized controlled trials. Cancer treatment reviews. 2013;39:44-50.
14. Cohen JP. Overcoming regulatory and economic challenges facing pharmacogenomics. New Biotechnology. 2012;29:751-6.
15. Marshall A. Getting the right drug into the right patient. Nature Biotechnology. 1998;16:9-12.
16. Health Expenditures. CDC/National Center for Health Statistics. 2013:http://www.cdc.gov/nchs/fastats/hexpense.htm.
17. Lamba JK, Lin YS, Schuetz EG, Thummel KE. Genetic contribution to variable human CYP3A-mediated metabolism. Advanced Drug Delivery
Reviews. 2002;54:1271-94.
18. Hung S, Chung WK, Liou L, Chu C, Lin M, Huang H, et al. HLA-B*5801 allele as a genetic marker for severe cutaneous adverse reactions caused
by allopurinol. Proceedings of the National Academy of Sciences of the United States of America. 2005;102:4134-9.
19. Kim S, Misra A. SNP genotyping: technologies and biomedical applications. Annual Review of Biomedical Engineering. 2007;9:289-320.
20. McCarthy JJ, Hilfiker R. The use of single-nucleotide polymorphism maps in pharmacogenomics. Nature Biotechnology. 2000;18:505-8.
21. Anderlik MR, Rothstein MA. Privacy and confidentiality of genetic information: what rules for the new science? Annual Review of Genomics and
Human Genetics. 2001;2:401-33.
22. Godman B, Finlayson AE, Cheema PK, Zebedin-Brandl E, Gutiérrez-Ibarluzea I, Jones J, et al. Personalizing health care: feasibility and future
implications. BMC medicine. 2013;11:179.
23. Martinelli-Boneschi F, Giacalone G, Magnani G, Biella G, Coppi E, Santangelo R, et al. Pharmacogenomics in Alzheimer's disease: a genome-
wide association study of response to cholinesterase inhibitors. Neurobiology of Aging. 2013;34:1711.e7-13.
24. Wurtman RJ. Personalized medicine strategies for managing patients with parkinsonism and cognitive deficits. Metabolism: Clinical and
Experimental. 2013;62 Suppl 1:S27-9.
25. Ho L, Fivecoat H, Wang J, Pasinetti GM. Alzheimer's disease biomarker discovery in symptomatic and asymptomatic patients: experimental
approaches and future clinical applications. Experimental gerontology. 2010;45:15-22.
26. Schmidt LE, Dalhoff K. Food-drug interactions. Drugs. 2002;62:1481-502.
27. Bailey DG, Dresser GK. Interactions Between Grapefruit Juice and Cardiovascular Drugs. American Journal of Cardiovascular Drugs. 2004;4:281-
28. Rechel B, Grundy E, Robine J, Cylus J, Mackenbach JP, Knai C, et al. Ageing in the European Union. Lancet. 2013;381:1312-22.
29. The Concentration of Health Care Spending. NIHCM Foundation; 2012.
30. U.S. Census Bureau Projections Show a Slower Growing, Older, More Diverse Nation a Half Century from Now. U.S. Census Bureau, 2012.
31. Platt D. Drugs and Aging. 1986.
32. Klotz U. Pharmacokinetics and drug metabolism in the elderly. Drug metabolism reviews. 2009;41:67-76.
33. Hubbard RE, O'Mahony MS, Woodhouse KW. Medication prescribing in frail older people. European Journal of Clinical Pharmacology.
34. Cherubini A, Oristrell J, Pla X, Ruggiero C, Ferretti R, Diestre G, et al. The persistent exclusion of older patients from ongoing clinical trials
regarding heart failure. Archives International Medicine. 2011;171:550-56.
35. Toren A, Fowler RA. Eligibility criteria of randomized controlled. JAMA. 2013;297:1233-40.
36. Grossman E, Messerli FH. Why beta-blockers are not cardioprotective in elderly patients with hypertension. Current cardiology reports.
37. Juurlink DN, Mamdani MDM, Lee DS, Kopp A, Austin PC, Laupacis A, et al. Rates of hyperkalemia after publication of the Randomized
Aldactone Evaluation Study. The New England Journal of Medicine. 2004;351:543-51.
38. Wong WB, Carlson JJ, Thariani R, Veenstra DL. Cost effectiveness of pharmacogenomics: a critical and systematic review. PharmacoEconomics.
39. van den Akker-van Marle ME, Gurwitz D, Detmar SB, Enzing CM, Hopkins MM, Gutierrez de Mesa E, et al. Cost-effectiveness of
pharmacogenomics in clinical practice: a case study of thiopurine methyltransferase genotyping in acute lymphoblastic leukemia in Europe.
Pharmacogenomics. 2006;7:783-92.
40. Schelleman H, editor Advies alglucosidase alfa (Myozyme®) bij de indicatie ‘ ziekte van Pompe ’2012; Diemen.
41. Lee CP, Chertow GM, Zenios SA. An empiric estimate of the value of life: updating the renal dialysis cost-effectiveness standard. Value in Health.
42. Hirth RA, Chernew ME, Miller E, Fendrick AM, Weissert WG. Willingness to Pay for a Quality-adjusted Life Year: In Search of a Standard.
Medical Decision Making. 2000;20:332-42.
43. Ubel PA, Hirth RA, Chernew ME, Fendrick AM. What is the price of life and why doesn't it increase at the rate of inflation? Archives of Internal
Medicine. 2003;163:1637-41.
44. Bobinac A, van Exel J, Rutten FFH, Brouwer WBF. The Value of a QALY: Individual Willingness to Pay for Health Gains Under Risk.
PharmacoEconomics. 2014;32:75-86.
45. Bobinac A, van Exel N, Rutten FFH, Brouwer WBF. Valuing QALY gains by Applying a Societal Perspective. Health Economics. 2013;22:1272-

46. Bala MV, Zarkin GA. Pharmacogenomics and the evolution of healthcare: is it time for cost-effectiveness analysis at the individual level?
PharmacoEconomics. 2004;22:495-8.
47. Bosetti R, Marneffe W, Vereeck L. Assessing the need for quality-adjusted cost-effectiveness studies of nanotechnological cancer therapies.
Nanomedicine. 2013;8:487-97.
48. Annemans L, Redekop K, Payne K. Current methodological issues in the economic assessment of personalized medicine. Value in Health.
49. Personal correspondence with the Radboud Clinical Genetic Center. 2014.
50. Planningsbesluit klinisch genetisch onderzoek en erfelijkheidsadvisering - 05-03-2009. Ministerie van Volksgezondheid, Welzijn en Sport.
51. Coverage and Reimbursement of Genetic Tests and Services2006: Secretary’s Advisory Committee on Genetics, Health, and Society.
52. Drummond MF, Wilson DA, Kanavos P, Ubel P, Rovira J. Assessing the economic challenges posed by orphan drugs. International Journal of
Technology Assessment in Health Care. 2007;23:36-42.
53. Peterson-Iyer K. Pharmacogenomics, ethics, and public policy. Kennedy Inst Ethics J. 2008;18:35-56.
54. Haffner ME. Adopting Orphan Drugs — Two Dozen Years of Treating. The New England Journal of Medicine. 2006;345:445-7.
55. Gross CP. Participitaiton in Cancer Clinical Trials. JAMA. 2014;291:2720-26.
56. Xie HG, Kim RB, Wood AJ, Stein CM. Molecular basis of ethnic differences in drug disposition and response. Annual Review of Pharmacology
and Toxicology. 2001;41:815-50.
57. Benatar M. Lost in translation: treatment trials in the SOD1 mouse and in human ALS. Neurobiology of Disease. 2007;26:1-13.
58. Lieschke GJ, Currie PD. Animal models of human disease: zebrafish swim into view. Nature Reviews Genetics. 2007;8:353-67.
59. Smart A, Martin P, Parker M. Tailored medicine: whom will it fit? The ethics of patient and disease stratification. Bioethics. 2004;18:322-42.
60. Buchanan A, Califano A, Kahn J, McPherson E, Robertson J, Brody B. Pharmacogenetics: ethical issues and policy options. Kennedy Institute of
Ethics Journal. 2002;12:1-15.
61. Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule, (2003).
62. Rothstein MA, Epps PG. Ethical and legal implications of pharmacogenomics. Nature reviews Genetics. 2001;2:228-31.
63. Appelbaum PS, Waldman CR, Fyer A, Klitzman R, Parens E, Martinez J, et al. Informed consent for return of incidental findings in genomic
research. Genetics in medicine : official journal of the American College of Medical Genetics. 2013:1-7.
64. McGuire AL, Beskow LM. Informed consent in genomics and genetic research. Annual review of genomics and human genetics. 2010;11:361-81.
65. Roden DM, Pulley JM, Basford MA, Bernard GR, Clayton EW, Balser JR, et al. Development of a large-scale de-identified DNA biobank to
enable personalized medicine. Clinical pharmacology and therapeutics. 2008;84:362-69.
66. Direct-to-Consumer Genetic Testing: Perceptions, Problems, and Policy Responses, (2012).
67. Welke informatie moet ik als patiënt krijgen over een medische behandeling? : Ministerie van Volksgezondheid, Welzijn en Sport; [cited 2013
December]. Available from: http://www.rijksoverheid.nl/documenten-en-publicaties/vragen-en-antwoorden/welke-informatie-moet-ik-als-
68. Moldrup C. Ethical, social and legal implications of pharmacogenomics: a critical review. Community Genetics. 2001;4:204-14.
69. Eng C, Sharp RR. Bioethical and clinical dilemmas of direct-to-consumer personal genomic testing: the problem of misattributed equivalence.
Science translational medicine. 2010;2:17cm5.
70. Wang X, Tian J. A gene selection method for cancer classification. Computational and mathematical methods in medicine. 2012;2012:586246.