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Lgbt Patient Centered Outcomes

Lgbt Patient Centered Outcomes

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Published by Ken Williams
The National LGBT Cancer Network released a new report that uses the direct experiences of cancer survivors to paint a stark picture of the effect of discrimination on LGBT health.
The National LGBT Cancer Network released a new report that uses the direct experiences of cancer survivors to paint a stark picture of the effect of discrimination on LGBT health.

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Categories:Types, Research
Published by: Ken Williams on Jun 12, 2013
Copyright:Attribution Non-commercial

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05/17/2014

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lgbtpatient-centeredoutcomes
Cancer survivors teach us how to improve care or all
liz margolies, nfn scout
 
Margolies L, Scout NFN.
LGBT Patient-Centered Outcomes: Cancer Survivors Teach Us How To Improve Care For All.
April 2013.Online report available at: www.cancer-network.org/patient_centered_outcomes
sponsors
The National LGBT Cancer Network addressesthe needs o LGBT people with cancer andthose at risk by
educating
the LGBT communityabout their increased cancer risks,
training
 healthcare providers to oer more culturallysae and welcoming care to LGBT patients,and
advocating
or LGBT inclusion in nationalcancer organizations, research, and media. TheNational LGBT Cancer Network conducted thisstudy in conjunction with Dr. Marilyn Stoner,Assistant Proessor o Nursing at CaliorniaState University, San Bernadino. Dr. Stonerwas the Principal Investigator or the study.Study unding was provided by The DAISYFoundation’s J. Patrick Barnes Grant or NursingResearch and Evidence-Based Practice Projects(
DAISYfoundation.org
). The development othis report was conceived and managed by theNational LGBT Cancer Network.The Network or LGBT Health Equity is acommunity-driven network o advocates andproessionals looking to enhance LGBT healthby eliminating tobacco use and other healthdisparities within our communities. We are oneo six CDC-unded tobacco disparity networksand a project o The Fenway Institute in Boston.The Network advances these issues primarilyby linking people and inormation to advancepolicy change. The Network or LGBT HealthEquity provided technical assistance on thedevelopment o this educational report.
dedication
This book is dedicated to the memory o Sister Bubbles Jewcee Fruit, a beloved member o theL.A. Sisters o Perpetual Indulgence who died o throat cancer in 2012. The Sisters are a 501(c)3amily, committed to social activism, social service and spiritual development.
 
The diagnosis o cancer is the beginning o a righteningand stressul period in anyone’s lie. The newly-diagnosedpatient is suddenly embroiled in a calculus o medicaldecisions. As cancer treatment is pursued, they might seemore health providers in a week than many riends will seein a decade. The extreme health event o a cancer diagnosesquickly molds average people into experts in the strengthsand weaknesses o the healthcare system.For many LGBT people, the critical questions about treatmentoptions and recovery are ollowed immediately by concernsabout social stigma. The all-important question o “Will I behealthy?” is compounded by an additional slew o worries.New questions such as “Should I come out to my doctor?”“Will I be sae i I do?” “Will my chosen amily be welcome?”and “Will I be oered the inormation I need to know to takecare o my relationship, my sexuality, my ertility, and myamily?” are thrust into the oreront.An increasing body o research suggests that these questionsare related to health outcomes. Patient assessments o the
quality 
o their own healthcare are more predictive o healthoutcomes than provider ratings. Importantly, those that arethe most satised with their healthcare tend to
stay 
healthier.These ndings have led to a new movement in healthcare,moving rom “what’s the matter” with patients to “whatmatters” to patients.
1
We describe this approach as “patient-centered care.”Shiting to patient-centered care represents not onlyhealthier people but also a large potential cost savings to ourhealthcare system. As a result, there is a large investmentinto researching “what matters” to patients. In 2013, anestimated $320 million o new unding will be dedicated toresearching how to improve patient-centered outcomes in theU.S.
2
 Despite a long history o documenting LGBT healthdisparities, little is known about “what matters” to thiscommunity with regard to healthcare. Like many others,members o the LGBT community oten think o the healthsystem in the old model, where
good care
is solely dened
Introduction
by
good medical decisions
. In the new patient-centered caremodel, how patients
feel
about medical decisions as well as aperception o
equitable treatment by providers
blends togetherto create the best possible health outcomes. Exploring theactors in this larger model might help explain the history oworse health outcomes experienced by the LGBT community.LGBT cancer survivors are one such population that reportspoorer health outcomes than their non-LGBT counterparts.
3-5
 This act, combined with the intense interactions cancersurvivors have with the healthcare system, makes exploringthe insights o these survivors particularly ertile ground toadvance both patient-centered care as well as LGBT health.In the ollowing pages we present the responses o asurvey o 311 LGBT cancer survivors as they describe whatthey would want healthcare providers to know about theirexperiences. Some o their stories show great strengths inour healthcare system. Some expose weaknesses. Takenas a whole, their words provide us with a roadmap o howto improve LGBT patient-centered outcomes. Not just orcancer care, but across all health disciplines.We wish to thank all o the survivors who had the courage tospeak up honestly about their experiences. By the very natureo this study, it is likely some o the voices on the pages thatollow have now been silenced. Let us honor those lives byusing all the lessons here to build lasting change.
liz margolies, lcsw
executive director, national lgbt cancer network
scout, ph.d.
director, network for lgbt health equityat the fenway institute
1. http://healthaairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/2. http://www.pcori.org/how-were-unded/3. Boehmer, U., Miao, X. and Ozono, A. (2011), Cancer survivorship and sexual orientation.
Cancer.
117: 3796–3804. doi: 10.1002/cncr.259504. Hart, S., Coon, D., Kowalkowski, M., & Latini, D. (2011). 163 Gay Men with Prostate Cancer Report Signicantly Worse HRQOL Than Heterosexual Men.
The Journal of Urology 
. 185(4), e68-e695. Kleinmann, N. et al. Nat. Rev. Urol. 9, 258–265 (2012); published online 10 April 2012; doi:10.1038/nrurol.2012.56
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