Many have documented the shift from a paternalistic approach to medicine to a patient-centered approach, with greater participation by patients in their care decisions. The Internet has encouraged participation in health care for almost two decades. The Association of Cancer Online Resources in 1995 became one of the earliest groups to use listservs specific to different cancer types.
Now we are witnessing the rise of the e-patient, online advocates helping others to join participatory medicine. The joining of social media and participatory medicine can be observed throughout the stages of an illness, including:
- Diagnosis and information gathering;
- Finding a provider or second opinion;
- Accepting a diagnosis and entering a community;
- Participation in research; and
- Being an advocate.
Diagnosis and Information Gathering
A majority of Internet users now seek medical information online. Even when the patients themselves are not Internet savvy, often a family member will take on the role of Internet information czar. Based on a diagnosis or even just symptoms, many people start with well-known online sources for health information or try "Dr. Google" and get thousands of results, often with conflicting opinions.
Search engines now show results from social media, including information from forums, Facebook and Twitter. In addition, patients might begin to ask others on social media platforms for advice. The emerging e-patient also might begin to follow blogs and Google or Yahoo! groups as information sources. Social media can wield the same power as "word of mouth," except that it spreads faster and now is indexed in search engines.
However, there is a lack of social media roadmaps available to offer guidance on choosing reliable sources of information. There is an opportunity for health care providers to recommend reliable websites, as well as social media sites, that might benefit the information seeker.
Finding a Provider or Second Opinion
In addition to seeking information, the patient will seek advice on which doctor to see and/or which hospital to choose. Social media provides an ideal platform for both common problems like diabetes and breast cancer and rare diseases.
A search for "transplant" on Facebook yields dozens of results and many opportunities for advice on choosing a provider. Even after a choice is made, Twitter and other social media sites provide an opportunity to ask other patients what to expect and request prayers from family and friends.
Rating sites for physicians and hospitals are readily available in the Health 2.0 world but currently are underused. Some question how patients can sort through the ratings, which still have either limited data (patient satisfaction) or are too complex for the layman (concepts like risk-adjusted hospital mortality).
Accepting a Diagnosis and Entering a Community
Once diagnosed with a chronic condition, a patient is a member of a community with common concerns. It is up to them to join that community, and the online options are growing (www.patientslikeme.com and www.organizedwisdom.com are two examples).
In the participatory medicine model, the health care provider can recommend an online community that can support the newly diagnosed patient. The benefits to joining such a community include feeling less alone, learning how other clinicians are treating your condition, how other patients are faring, and what does and does not work for other patients.
For rare conditions, there are significant advantages to joining an online community with the few patients with that disease who might be geographically far apart. In a truly participatory model, the physician could actually prescribe a community that has been recommended by other patients.
Helping patients understand moderated and unmoderated groups can help them move into the world of online communities. There also is an opportunity for hospital and provider groups to partner with online communities to enhance patient-physician interaction on an organizational level.
Lethal Lag Time -- Participation in Research
A major concern for patients with life-threatening diseases is lethal lag time, that is, the long timeline for development of new drugs and treatments that can mean that many patients will not survive to see new treatments become available. Patients with life-threatening and chronic conditions are highly motivated to participate in research, and online communities can enable this.
Online communities, which encourage recording one's treatments, provide rich patient outcome data for research. They also provide opportunities for increased awareness of clinical trials. A variety of social media tools can facilitate volunteering for clinical trials. One of the most successful examples is Army of Women, which connects breast cancer clinical trial volunteers and researchers.
Being an Advocate While Managing Privacy
Being open about a diagnosis means giving up some privacy about that medical condition. More patients are willing to take this risk in the hope of finding others who can offer support as they cope with an illness and as a means to advocate for the needs of others.
However, recent examples of data scraping from some patient social networks raise concerns about how the information might be used without patients' permission for market research. Some patients might prefer more private networks, while others might want to allow access to their information so researchers can learn from their experiences.
For health care providers, engagement in social media can easily become treacherous. Giving medical advice through Facebook or discussing patients even when you think the information is de-identified can lead to career-ending disasters. A few courageous physicians are willing to navigate these waters and create participatory interactions with their patients. The balance of privacy versus advocacy will continue to be a challenge for the e-patient community and health care providers.
What the Future Holds
Social media enables greater participation in medical care through the development of communities and interaction with health care providers. Social media can enhance the search for information and health care providers, while online communities empower patients and providers to interact at new levels. In addition, the rise of social media and participatory medicine has the potential to accelerate clinical research.
Participatory medicine is destined to grow as the ranks of e-patients expand through social media platforms. The best evidence for this is the growth in the increasing number of condition-specific social networks and more people using mainline social media for health information and connections.
As hospitals and health care providers better engage patients and develop patient councils to seek advice on the process of care, participatory health care will blossom. While privacy violations and doctor bashing could create short-term reactions against social media's potential in health care, the convergence of social media and participatory medicine will continue to advance.