Health 2.0: Health for All, Health by All

Kate Jongbloed

This article has been accepted for publication in the Global Forum on Health Research/The Lancet anthology of Young Voices in Health Research 2009.

The godparents of global health meeting at Alma Ata may not have had BlackBerrys orMacBooks, but if they were to meet again now, they would almost certainly includetechnology in their toolkits for promoting health for all. In the next few pages, we willlook at how technology driven health interventions are important tools to address theobstacles to health for all. As well, we will see how technology helps us move beyondhealth

for

all to enable health

all, where individuals become real actors in their ownhealth.In September 1978, at the International Conference on Primary Health Care, participantslaid out the principles of universal primary health care in the Declaration of Alma Ata.These principles were seen as steps to reaching an “acceptable level of health for all thepeople of the world by the year 2000” (ICPHC, 1978). Nearly 10 years on from thatdeadline, the world still faces an overwhelming burden of infectious and chronic disease.According to the most recent World Health Report “on the whole, people are healthier,wealthier and live longer today than 30 years ago…but the substantial progress in healthover recent decades has been deeply unequal” (WHO, 2008). The persistent inequality inhealth outcomes between and within countries has prevented the vision at Alma Ata frombeing realized. Newer targets, such as the Millennium Development Goals have alsoremained out of our reach.Yet, as we begin to stretch our legs in the new millennium, the tools at our disposal arechanging. Even as weak health systems, too few health care providers, and insufficientfunding and commitment have worked as obstacles to reaching our health goals, we havean opportunity to overcome these obstacles by adapting our approach. In fact, the socialmedia revolution at the start of the 21

century has allowed technology-based health toolsto emerge that are changing the face of sickness and disease all over the world. Inparticular, technology is changing the relationship between patient and expert.What is so fundamental about the change that these eHealth and mHealth applicationsbring? Social media changes the timescale of surveillance, it transforms the patient intothe researcher, it maximizes the reach and minimizes the cost of health promotion, and itis measurable and adaptable. But perhaps the most transformative aspect of applyingsocial media to health is that it puts the responsibility for health in everyone’s hands, not just those of doctors and nurses or administrators and epidemiologists. In fact, thistechnology is an innovation for health

all, as well as health

for

all.When we talk about social media for health, we are referring to two interfaces: internet(eHealth) and mobile phones (mHealth). In the West, where internet coverage isrelatively high, internet based eHealth initiatives are popular. For example, eHealth can

2include health promotion, remote health training, peer disease management, standardizingaccess to patient data and digitizing patient records. However, in much of the developingworld, where mobile phone networks vastly out weigh internet coverage, mobile phonebased mHealth applications are favourable (Vital Wave, 2009). Like eHealth, mHealthincludes health promotion, as well as remote data collection, remote monitoring,communication and training for health care workers, disease tracking, and diagnostictreatment and support (Vital Wave, 2009). Next, we will look at some examples.Google, a brand almost synonymous with the internet, started an eHealth initiative thisyear that focuses on disease detection and surveillance. Part of the company’s Predictand Prevent initiative, Google Flu Trends uses a correlation between certain search termsand rates of influenza in the United States to estimate flu activity “up to two weeks fasterthan traditional systems” (Google, 2009a). As yet, there has been no critical examinationof Google’s approach by the health industry, so for now we will have to be content withthe legitimacy provided by their affiliation with the US Centers for Disease Control andPrevention (Google, 2009a).On the other side of the world, Project Masilueke has harnessed the power of “please callme” text messages in South Africa to raise awareness about HIV/AIDS and promotevoluntary counseling and testing. The PCM messages are free for senders, subsidized byadvertising using the remaining characters in each text message. Project Masilueke sendsone million awareness messages each day tacked onto the end of these PCM messages,directing users to the National HIV/AIDS Helpline. During the pilot, the Helplineexperienced triple the usual call volume. Next steps will be to expand the service toinclude personalized medication and appointment reminders, as well as rolling out easy-to-use home HIV testing kits accompanied by telecounselling (Vital Wave, 2009).Google Flu Trends and Project Masilueke are just two examples of how social media isbeing applied to health. In these examples, we saw the power of technology to providefaster data on disease and education about available health resources. Still, in theexamples above we have not seen a drastic change in the relationship between healthexpert and health consumer. While the examples illustrate ways in which social mediacan maximize collaboration and reach, the process of “health” is still carried out bygovernments, NGOs, corporations and health professionals. Let’s look closer now at howsocial media can change the role of the individual within health, paving the way forhealth

all as well as health

for

all.Google Health is a platform for individuals to manage their health very much like theywould manage their email correspondence. The first step is for an individual to accesstheir medical records from doctors, pharmacies and hospitals using Google’s secureonline partnerships. Next, users can indicate each of their medical conditions, allergiesand medications. Google then uses this information to suggest online resources, checkfor potential drug interactions, and create a medication schedule. Users are given aplatform to access all their health information in one place and share it with their doctor.Both the user and their health providers can use this centralized information to respondmore effectively to health conditions as a team. Tools like Google Health change who

3controls patient information, freeing it from paper charts and giving the patient theopportunity to become more active in health decision making (Google, 2009b).Patients Like Me, a social networking site for people with chronic disease based in theUnited States, takes a step further than Google Health by supporting users to connectwith others living with the same condition. Dr. Michael Massagli (2008), socialstatistician at Patients Like Me, describes the service as helping users become active intheir own care in three areas: “share, find, learn”. Each user joins and develops a profileon the site where they include a diagnosis summary, updates of their current status, and anarrative of their experience. Linking with other patients on the site, users are able togive advice or learn from others experiencing similar difficulties. One member of Patients Like Me’s HIV community shared the impact of a drug holiday on his profile:“anyone who wants to see what happens on a 2 months drug holiday just have a look atmy updated viral load and CD4 count” (Massagli, 2008). Other examples include userswho participate in peer disease management and use shared data to drive treatmentdecisions. Patients Like Me supports the changing role of patients from passiveconsumers of health care to active participants in their own disease management andcreators of valid health knowledge.Patients Like Me also provides an opportunity for evidence-based medicine for bothhealth practitioners and pharmaceutical companies. Traditionally, best practices in healthare developed through clinical trials and care conventions. Both of these approaches aredependent on relatively infrequent interactions with patients who are asked to recall theirsymptoms over several weeks or months. With these new health applications, the mostactive users input information about their condition on a weekly or daily basis, includingreactions to medications, new symptoms, and impact of lifestyle changes. Aggregatingthis information provides an illustration of disease management based in real lifeexperience over time. Thousands of users reporting their experience living with andtreating a number of different diseases allows a more nuanced picture of each conditionto develop than was previously accessible to the health industry.So far we are only scratching the surface of the opportunities made available through newinternet and mobile phone based applications for health. Their effectiveness remainscontingent on how well the health establishment can integrate them and becomeresponsive to real-time microdata, often generated far from hospitals and researchfacilities but instead by those on the frontlines of health care and even patientsthemselves. It is also the responsibility of the health establishment to look critically atthe real impact of these untraditional responses on health outcomes, rather than dismissthem as a passing trend. If this can be achieved, the decentralization of health thataccompanies the adoption of social media by the health industry creates a newopportunity for health for all, and health by all.