(A slightly different version of this post was originally written for Mayo Clinic’s Social Media Health Network, and was posted there April 19, 2011)
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As evidenced by the participation on this site, and on Twitter conversations such as the #hcsm chat on Sunday evenings, there is great interest and excitement around using social media (SocMed) tools to enhance health care communications. As a physician, I am very interested in determining the most effective and efficient ways to use SocMed to enhance patient care. However, in our excitement it is necessary to assess what patients think about health care communications and social media (hcsm). Two recent studies help assess the lay the of the land.
The first is an article from the Pew Internet & American Life Project. Pew Internet (headed by @SusannahFox) is a rich source of information regarding how the Internet is affecting Americans’ lives. In February 2011, Pew Internet published a report titled “Peer-to-peer Healthcare” that assessed how Americans are increasingly turning to the Internet for peer-to-peer support in times of illness. The report shows that 18% of poll respondents have been online to connect with others dealing with similar health problems. Nearly 1/4 of respondents with chronic illnesses such as diabetes, heart or lung disease, or cancer have been online to connect with peers. This aligns with the concept of the “e-patient” (pdf link) in which patients are described as equipped, enabled, empowered, engaged, equals, emancipated and experts. Through Internet connections, patients can help each other learn about their illnesses and treatment options and can empower each other to become partners in health care as opposed to just recipients of health care. Patient-to-patient communication appears to be even more valuable in the case of rare illnesses, in which patients are few and may live far away from each other.
However, patient-to-patient communication is not yet the standard form of communication regarding health issues. When asked where they sought help when ill, 20% of patients reported using peer-to-peer communication, 54% sought help from family and friends, and 70% received advice from a health care professional. Furthermore, the vast majority of such communication happened offline: only 5% of respondents had communicated online with a health care professional or fellow patient, and 15% had communicated online with family and friends. As noted above, online communication was much more common among those dealing with rare illnesses: over 50% of people dealing with a rare disease had used online communication to connect with family and friends and with others affected by the same illness. Different needs and different situations led to patients using different resources: there were some situations where health care professionals were favored, some where peers and family were favored, and some where each group was equally useful (summarized here).
This Pew Internet report demonstrates that patients use multiple sources of information, depending on their medical illnesses and the particular information they are seeking. Clearly, patient-to-patient communication is an important source of information–especially in cases of rare illnesses. However, most of this communication among patients, physicians, and family and friends is happening off-line.
At the same time, a March 2011 Capstrat-Public Policy Polling survey reported that most patients surveyed are not actively seeking to communicate with their health care providers online. 84% of respondents to this poll indicated that they would NOT use social media or instant messaging for medical communication even if offered by their physician. Among millennials (age 18-29 years old), 79% reported they would not take part in online communications with their health care provider. Online communication was more favored for administrative tasks, appointment scheduling, medical record access and nurse consultation as opposed to direct communication with a health care provider.
This poll is a bit limited in its implications–the survey was a general survey, and did not assess patients with chronic medical illnesses who might be more inclined to use online communication or patients who live in medically-underserved areas who might find online communication more efficient. However, it suggests that online channels are not yet ready to play a major role in health care communications between patients and health care providers. At the same time, there appear to be certain areas where online communication can be helpful and moving these tasks (nurse helplines, administrative tasks and scheduling, etc) to online channels can free up additional time for providers to communicate with patients through patients’ preferred methods.
Taken together, these reports provide a sense of where we stand as we assess using SocMed tools for health care communications. There are evidently some areas where SocMed and online communication tools can make a difference right now: dealing with general questions and administrative tasks, linking patients with chronic medical illnesses and especially those with rare illnesses, and communicating with family and friends in times of illness. We are not yet at a point where patients are ready to move to SocMed and online communications in large numbers.
Maybe this isn’t all bad, though. Patients may not be 100% ready to engage online or through SocMed channels, but it appears that physicians are not ready yet either. Ted Eytan (@TedEytan) discussed physicians readiness to engage in social media in a paper published in The Permanente Journal and a related blog post discussing the results of a poll of members of the physician-only online community Sermo.com. In the Sermo poll, only 15% of responding physicians indicated they definitely or certainly saw a role for SocMed as an integral part of their practice, patients, and community. The article in The Permanente Journal discusses the potential of SocMed, but notes that SocMed use is in its infancy for health care communications.
So: at this point neither patients nor physicians are rushing to engage with each other through SocMed channels, and each side probably has their reasons (including privacy, reimbursement, time commitments, etc). But there is clearly a minority on each side that is increasingly interested in using online and SocMed tools to promote communication. So let us start where we are: physicians should start to engage with patients in the areas where patients are comfortable doing so. Health care professionals can use SocMed “to build trust, promote management of health and wellness, and disseminate knowledge.” (from T. Eytan’s The Permanente Journal article already mentioned). Patients should continue to use these communication channels in the ways they feel most comfortable: communicating with friends and families, other patients, and (increasingly) health care providers.
As trust develops and as online relationships strengthen, we can transition to true health care-focused communication through online channels–something that will be facilitated by the development of patient-friendly secure portals that allow provider-patient communication through secure channels. We should continue working–on each side of the stethoscope–to develop and strengthen the networks that will allow us to provide the benefits of online health care communications to everyone once the tools and technology are further refined and patients and providers become increasingly comfortable and familiar with them.
Posted by richmonddoc 
Social Media Healthcare 