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Salud 2.0 Part One: Healthcare Collaboration, e-Patients, and Social Technologies

Posted By Gonzalo Bacigalupe, Thursday, July 21, 2011
For two days in July, The University of Deusto Business School in Bilbao hosted the course Salud 2.0 Euskadi. More than 160 healthcare professionals, administrators, researchers, and business leaders, came to learn and discuss what emerging digital media offers to patients, professionals, and healthcare organizations. The Basque Institute for Healthcare Innovation (o+berry) and TEDxSol organized the conference with Luis Luque (a health informatics doctoral candidate at the University of Tromso) and Manuel Armayones, a researcher from Cataluña. Since most of the contributions to the course were in Spanish as well as the archived stream, interviews, and visuals, with this entry I share my summary of the terrific contributions and ideas for readers in the United States. I believe this is especially significant since the healthcare experts in Spain deal mostly with quality of access and patient care rather than first worrying about insurance access (health access in Spain is written in the Constitution as a citizen right).

Two American "starts” participated: e-Patient Dave deBronkart, a well-known inspiring patient advocate, and Manny Hernandez, founder and director of the Diabetes Hands Foundation. Their work is widely available on the Internet and since it is in English, following their links should be more informative than attempting to synthesize their engaging talks. Appropriately, being patients themselves, they were the ones who kicked off the conference calling for clinicians to listen, stay curious, and be transparent. Dave asked us to advocate strongly for patients to have access to their own health data. His mantra, Gimme my Damn Data, is the subject of a popular and compelling TedTalk.

The Blue Button for Health Data initiative is being promoted by the Veteran Administration and the Medicare and Medicaid Services.

Beginning with their personal histories, surviving cancer for Dave and living with diabetes for Manny, their talks transmitted a contagious resilience. Participating in patient care is the responsibility of everyone, not just those in the healthcare professions. Communities of patients telling their story and utilizing new media productively are not only possible but also sustainable and rich in possibilities. The video Do the Big Blue Test on World Diabetes Day is a great testimony to the potential that social technologies offer in fostering healthcare collaboration and reaching large segments of the population. Their call for networking across the healthcare professional, governmental, business, and citizen spectrums was refreshing and percolated through the whole course. It was also in sync with Kronikoen, the Basque Health System strategy to deal with chronic illness.

Julio Mayol, innovation director, and professor and surgeon at the Clinic Hospital of Madrid and Jorge Juan Fernandez, e-health and health 2.0 director of the Sant Joan de Déu Pediatric Hospital of Barcelona, reported on their efforts to get hospitals closer to patients’ needs. It seems like an oxymoron but often hospitals practices are not designed to collaborate with patients. In the family health systems movement we have discovered that institutions are often designed to prevent collaboration among professionals and to reinforce the expert medical role versus a passive patient one. Innovation is not easy in hospital settings despite the urgent need for reorganizing around family and patient health rather than purely around illness. Julio, citing Shahid Shah, reminded us: "People want more time with their physicians and don’t really care who manages their chart”. Good ideas, as he reported, are not valuable unless someone uses them. Shah provided many examples of how to use social media effectively for research and development in healthcare. He insisted that concerns about reputation are overrated and should not stop us from introducing change.

Jorge Juan spoke about the "liquid” hospital—how a hospital has used information communication technologies to integrate patients as active stakeholders. The liquid hospital is just one of many initiatives that his institution has implemented for 4 years. The information revolution has been disruptive and two variables changed: time and space. What I heard was that we are moving fast towards virtual interactions demanding a change in the doctor’s role; a change not necessarily welcomed. His hospital intends to facilitate the sharing of information to open up new conversations with patients, and to publish its results in the name of accountability. To achieve these goals this private hospital has embraced most but not all the popular social media outlets to share hospital and medical news, to ease patient attention, obtain funding, market new services, and to attract human resources.

Luis Luque and I grounded this conversation in the ethical and social challenges that arise with the mainstreaming of emerging media. Luis addressed some of the ethical problems that arise as patients have access to the same technologies. He showed the example of eating disorder patients who reinforce and normalize their pathology, tobacco consumers that map bars welcoming smoking, and more generally the potential disinformation related to finding appropriate information on the Internet. A YouTube video of a patient at a hospital bed complaining about how he was mistreated by the healthcare personnel created some controversy. For Luis, the video demonstrated the negative side of patient ability to go public bashing health services. For others, me included, the video highlighted the ability of patients to make accountable unresponsive professionals and healthcare organizations. Privacy in patient communities was also mentioned, including the danger of inappropriate use of genetic information. Luis’ questions challenged healthcare professionals to think about privacy of healthcare professionals and of patients.

My presentation asked participants to reflect on issues of health access and quality and the digital divide. The potential of emerging technology is clear, initiatives like PatientsLikeMe and TextforBaby are good examples of social media platforms that can facilitate collaboration in health, and thus the alleviation of health inequity. Does the introduction of social technologies enhance the well-being of all the populations and decrease health disparities? Furthermore, could the integration of Information Communication Technologies in the healthcare setting solidify or widen the healthcare gaps? Vulnerable populations, the ones needing the most increase in access and quality of healthcare, are also those left behind in the adoption of new technologies. Health literacy and digital literacy seem to go hand in hand. Like access to healthcare does not necessarily correlate with quality; access to digital tools does not immediately mean that the user can use them effectively. Often in the implementation of e-healthcare innovations the early adopters are more privileged and typically the ones who benefit the most from the innovation. The implementation of social media initiatives in healthcare requires careful thinking of how to incorporate the less literate and the most vulnerable. In other words, we need to think not of the early adopters, but those often left behind--the most vulnerable.

Introducing e-health into the system of care should be more about health outcomes and less about the technology. This is not a novel idea, but one forgotten in social media healthcare circles. The now head of the Centers for Medicare and Medicaid Services (CMS) Donald Berwick, in article in JAMA (2003) suggested that technology should translate into improved patient outcomes. In Bilbao that morning, indeed there was consensus that technology should be at the service of health and not the other way around. In the afternoon, my workshop on ethical and social dilemmas reaffirmed both the creativity in implementing innovation on the ground and the difficulties we still have in addressing the core issues of access, cost, quality, and health outcomes. There is definitely a hunger for learning about social media, electronic medical records, and other health information communication innovations, but also a lot of fear and lack of support to experiment with them. We heard, for instance that whole health systems are experimenting with the possibilities of social networks (Facebook) to outreach and connect with patients and professionals. Paradoxically, however, the same institutions have imposed filters that prevent doctors, nurses, and administrators to use Facebook in their offices.

The comments of those in the audience with a twitter account (#Salud2eus) and the ones watching on their computers added to the richness of our face-to-face conversation. The engagement was certainly horizontal; similar to the one we lived through the conference face-to-face. The live stream and the virtual discussion that accompanied the presentations gave testimony to the possibilities, but also the challenges ahead of healthcare innovation. The design of the conference demonstrated too that the collaborative conversation with the elimination of professional silos could occur in a respectful as well as rich critical way.

Photo Link 1: http://www.flickr.com/photos/bacigalupe/5912113373

This is part one of a two part series on integration and social technologies. Read part two of Salud 2.0 next week.


Gonzalo Bacigalupe, EdD, MPH (third from right in the bottom row) is an Ikerbasque Research Professor with the Vulnerability to Stress and Resilience Research Team at the College of Psychology and Education, University of Deusto Bilbao; Associate Professor, Department of Counseling Psychology, College of Education and Human Development, University of Massachusetts Boston. Gonzalo is co-senior editor of Family, Systems, & Health. His webpage is at: www.gonzalobacigalupe.com

Tags:  health information technology  Social Media  technology 

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