Abstract

Summary: Patient organizations aim to improve the quality of life for people and their families who are affected by certain health conditions. Even though there has been a sharp rise in the demands on health systems during the last few decades, these systems have benefited from technological advances and the increasingly active role of users in managing their own health. The authors look at the evolution of patient associations into virtual health communities as a logical step in the development of communities of patients, families, and professionals who benefit from Web 2.0, and how it meets their needs regarding obtaining and sharing information, social support, and building relationships. They examine how this evolution has affected patients’ experiences and knowledge of their diseases. The authors conclude that virtual health communities can help to empower and to improve the self-efficacy of patient organizations, and can be a rich source of collaboratively constructed and shared knowledge as the result of contributions from patients, caregivers, and health professionals.
Keywords: Patient organizations, patient associations, virtual communities, e-patient, expert patient, chronic pediatric conditions.
Citation: Guillamon N, Armayones M, Hernandez E, Gómez-Zúñiga B. The role of patient organizations in participatory medicine: can virtual health communities help participatory medicine accomplish its objectives? J Participat Med. 2010 Dec 29; 2:e21.
Published: December 29, 2010.
Competing Interests: The authors have declared that no competing interests exist.

The Role of Patient Organizations in Health Care: From Patient to e-Patient

Patient organizations aim to improve quality of life for people and their families who are affected by certain health conditions. Their objectives include raising public awareness of a disorder, dissemination of information about the disease and its treatment, and promotion of scientific research. They may also serve as a mediator between the patient and the professional in certain circumstances.

According to Rabeharisoa,[1] organizations claim an identity by not only bringing together patients and families with a problem, but also by fighting for that problem to be recognized and treated appropriately. They often demonstrate that patients have knowledge about the condition that is not commonly known or recognized by health professionals. Furthermore, they often defend and demand the right of patients to make health policy decisions that have an impact on their disease.

European health organizations have a long history. In France, for example, they began appearing in the 1950s, and have been characterized over the last three decades by a difference in approach between doctors and researchers (who have focused on medical knowledge) and patient organizations (that have focused more on psychosocial aspects of disease). Barbot[2] noted that, starting in the 1980s, various organizations began to strongly criticize this division and to forcefully advocate a more active role for patients in the production of scientific knowledge.

At the moment, the European health system is overwhelmed with the demands caused by population growth, aging, and the needs of patients with chronic illnesses. The current system is designed more for patients with acute illnesses rather than for providing answers about preserving health and improving quality of life in the absence of disease. It often cannot meet these latter demands, which saturate health services and reduce the quality of care.

A number of initiatives in Europe are being carried out to help cushion the effects of this heavy demand on health care services. Patient organizations are one type of initiative, and are experiencing a clear surge in recent years. Examples include the establishment of the European Patient’s Forum (www.europeanpatientsforum.org), the Declaración de Barcelona de las Asociaciones de Pacientes en 2003 (Barcelona Declaration of Patients’ Associations 2003) (www.fbjoseplaporte.org/dbcn), and the creation of federations of patients like EURORDIS (Europe) and FEDER (Spain) in relation to rare diseases. While there are many differences between organizations from different European countries, the number of organizations of patients is growing exponentially.[3]

As patients take an increasingly active role in managing their own health, patient organizations to which they belong can assume a more influential role. The United Kingdom has expanded the Expert Patients Programme, an initiative of the National Health System for people with chronic conditions who are affected by physical disabilities. This project, which provides resources to patients for self-management of their disease, is based on peer support and begins from the premise that patients who are “experts” in managing their own illness can help others who have the same condition. (http://www.expertpatients.co.uk/).[4]

This expanded patient role can be greatly facilitated by the use of web-based technology in patient organizations. As noted by Wald and colleagues,[5] the use of the internet for health enables patients to be better informed and involved in their health care process, making sure that more appropriate use is made of health resources. It is evident that patients tend to become more informed, engaged, involved, and in control with increased use of the internet.[6] With this, society moves beyond the concept of an e-patient as a person who is merely informed about his or her health by the web (informed patient[7]) to someone who is also committed, capable, and empowered.[8] This changes the roles of professionals and patients and how they interact with each other.[5] Patients can now engage in individual, directed, continuous, and participatory actions.

The resulting interaction between patients, health professionals and researchers is shown by Eysenbach[9] to be similar to a pyramid, with patients occupying the top as the main actors in the health system. Eysenbach does not see patients as passive, waiting to receive treatment and care without questioning anything, but speaks of them in terms such as collaboration or “apomediation,” where the role of the patient will be influenced by their access to new technologies, either individually or in the context of patient organizations.

Virtual Health Communities: Beyond Organizations

Until recently, most patient organizations used the internet for informational purposes, rather than for collaboration among members.[10] Initially, the primary benefit of the internet was to help patient organizations to better inform about the disease and its treatment and to help families contact health professionals. However, their ability to promote the exchange of knowledge and social support among their members, to promote the construction of shared knowledge and thus to promote scientific research was very limited.

The evolution of the web and its interactive capabilities have resulted in the emergence of virtual health communities that go far beyond organizations as we have known them in the past. In these virtual communities, users can share personal experiences and opinions, and exchange social support.[11][12] Virtual communities are becoming an important source of information for users in making decisions about their health. Here users can find relevant information to help them to choose the best treatment, or the best professional in their neighborhood, or the best strategy to solve a particular problem, and this makes patients feel more empowered and less isolated in coping with their conditions (per van Uden-Kraan and colleagues[13][14][15]). Users who share the same condition or problem can often inform other patients more effectively than professionals about how to manage certain aspects of their illness or disease.[16] But, in addition to enabling social exchange, assisting with decision making and problem management (and thus improving their empowerment and self-efficacy), virtual communities are a powerful source of collaboratively constructed and shared knowledge through the contributions of patients, caregivers, and health professionals.

The emergence of virtual communities is not intended to replace the work of patient organizations. In fact, in many cases, organizations design and implement tools to create their own virtual communities. Users of these communities, as Fowler and Christakis found, report beneficial effects on their health and their happiness.[17][18][19] These authors state that changes in the health of one user often promotes changes in the health of others to whom the user is connected. The authors refer to this as a “collateral health effect.[20]” Through this process, virtual health communities can expand the effect on health and quality of life of patient organizations while connecting patients, caregivers, and professionals, and promoting changes in all of them. The collateral health effects have the potential to improve the entire health system because the health care delivered to one person may have health effects on others. In a virtual health community, having a positive impact on the health of one individual often extends to the rest of the community.

Virtual communities can also share knowledge, resources, and news from different organizations, professionals, caregivers, and patients.[21] Each user can share his or her area of expertise concerning a particular issue with the rest of the community. These communities can bring together members of the same organization, members of different organizations, or individuals who are not linked to any organization. According to Watts, a virtual community is a social network with properties “not explained by the constituent parts and not present in the parts.[22]” In this sense, a virtual health community encompasses more than its individual components.

Concerning the role of patient organizations in the new public health context that the internet is enabling, Lorca and Jadad[23] envision a scenario in which patients will participate in various virtual communities in order to reach other people with similar interests and in which they can also contribute to scientific research of their illnesses, eventually enabling the necessary critical mass to promote significant changes in the health system. Virtual communities, therefore, can be regarded as a step forward in the evolution of organizations, because they can be integrated into structures that connect them with other organizations, users, health professionals, and, ultimately, other individuals with whom they can create shared knowledge; and because all members can contribute knowledge and benefit from each other.

Wenger[24] described web based “communities of practice” whereby families and professionals publish information, share experiences and “learn by working.” Both internet based interaction and an open source philosophy enable what Cohendet[25] considered an evolution of “communities of practice” to “epistemic communities.” This is a concept coined by Knorr,[26] where virtual health communities generate knowledge that is useful for biomedical research.[27] Patient organizations, transformed through new technologies into “e-organizations,” can contribute decisively to new knowledge by bridging the chasm between basic research and therapeutic advances (especially in patients with rare diseases).

Frydman[28] noted that the challenge is to achieve sufficient critical mass to realize the model of “patient-driven research.” For this to happen, the role of patient organizations and virtual health communities in bringing together individual interests is critically important, and will help to advance biomedical research.

References

  1. Rabeharisoa V. From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France. Soc Sci Med. 2006;62:564–576.
  2. Barbot J. How to build an “active” patient? The work of AIDS associations in France. Soc Sci Med. 2006;62:538–551.
  3. Baggott R, Forster R. Health consumer and patients’ organizations in Europe: towards a comparative analysis. Health Expectations. 2008;11(1):85-94.
  4. The Expert Patient: A New Approach to Chronic Disease Self-Management for the 21st Century. UK Department of Health; 2001. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4006801
  5. Wald HS, Dube CE, Anthony DC. Untangling the Web–the impact of internet use on health care and the physician-patient relationship. Patient Education and Counseling. 2007;68:218-224.
  6. Bauerle S. How will internet use affect the patient. a review of computer network and closed Internet-based system studies and the implications in understanding how the use of the internet affects patient populations. J Health Psyc. 2003;8(1):25-38.
  7. Detmer E, Singleton P, MacLeod S, Wait S, Taylor M, Ridgwell J.
    The Informed Patient: Study Report. Cambridge: Cambridge University Health; 2003.
  8. Von Knoop C, Lovich D, Silverstein M, Tutty M. Vital signs: Ehealth in the United States. Boston: Boston Consulting Group; 2003.
  9. Eysenbach G. Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res. 2008;10(3):e22.
  10. Armayones, M, Hernandez-Encuentra E, Gomez-Zuniga B, et al. APTIC: a social network to improve the quality of life of members of patients’ associations. Orphanet Journal of Rare Diseases. 2010;5(Suppl 1):27. Published online 2010 October 19. doi:10.1186/1750-1172-5-S1-P27.
  11. Lau AYS, Kwok TMY, Ozok AA, Zaphiris P. Social Features in Online Communities for Healthcare Consumers – A Review. In: Ozok, AA, Zaphiris, P, eds. Online Communities and Social Computing: Third International Conference, OCSC 2009, Held as Part of HCI International 2009, San Diego, CA, USA, July 19-24, 2009, Proceedings. New York: Springer; 2009:682-689.
  12. Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive health communication applications for people with chronic disease. Cochrane Database Syst Rev. 2004(4):CD004274.
  13. van Uden-Kraan C, Drossaert C, Taal E, Shaw B, Seydel E, van de Laar M. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res. 2008;18(3):405-417.
  14. van Uden-Kraan C, Drossaert C, Taal E, Seydel E, van de Laar M. Participation in online patient support groups endorses patients’ empowerment. Patient Education and Counseling. 2009;74:61-69.
  15. van Uden-Kraan C, Drossaert C, Taal E, Seydel E, van de Laar M. Self-reported differences in empowerment between lurkers and posters in online patient support groups. J Med Internet Res. 2008;10(2):e18.
  16. Overberg RI, Alpay LL, Verhoef J, Zwetsloot-Schonk JH. Illness stories on the internet: what do breast cancer patients want at the end of treatment? Psychooncology. 2007;16:937-944.
  17. Christakis NA, Fowler JH. The Spread of obesity in a large social network over 32 years. N Engl J Med. 2007;357(4):370-379.
  18. Fowler JH, Christakis NA. Dynamic spread of happiness in a large social network: longitudinal analysis over 20 years in the Framingham Heart Study. BMJ. 2008;337:a2338.
  19. Smith KP, Christakis NA. Social networks and health. Annu Rev Sociol. 2008;34:405-29.
  20. Christakis NA. Social networks and collateral health effects. BMJ. 2004;329:184-185.
  21. Weiss JB, Lorenzi NM, Lorenzi N. Synthesizing community wisdom: a model for sharing cancer-related resources through social networking and collaborative partnerships. AMIA Annu Symp Proc. 2008;793-7.
  22. Watts DJ. The ‘new’ science of networks. Annu Rev Sociol. 2004;30:243-270.
  23. Lorca J, Jadad A. ¿Salud 2.0?.Revistaesalud.com. 2009; 5(19). Available at: http://www.revistaesalud.com/index.php/revistaesalud/article/viewArticle/325/655
  24. Wenger E. Comunidades de Práctica: Aprendizaje, Significado e Identidad. Barcelona: Paidós; 2001.
  25. Cohendet P, Créplet F, Dupouët O. Innovation organisationnelle, communautés de pratique et communautés épistémiques : le cas de Linux. Revue française de gestion. 2003/5;146:99-121.
  26. Knorr-Cetina K. Epistemic Cultures: How the Sciences Make Knowledge. New York: Harvard University Press; 1999.
  27. Armayones M, Carrión T, Bocanegra C. Redes Sociosanitarias Online Dinamizadas y Vinculadas (RessDiVi): reflexiones sobre nuestra experiencia. Revistaesalud.com. In press.
  28. Frydman GJ. Patient-driven research: rich opportunities and real risks. J Participat Med. 2009(Oct);1(1):e12. Available at: https://participatorymedicine.org/journal/evidence/reviews/2009/10/21/patient-driven-research-rich-opportunities-and-real-risks/. Accessed at: http://www.webcitation.org/5sl0EopC6

Copyright: © 2010 Noemi Guillamon, Manuel Armayones, Eulalia Hernandez, and Benigna Gómez-Zúñiga. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

 

 

Donate