Scroll down for the third entry of this 6-part blog series on Healthcare and Social Media!
The utilization of social media by patients can potentially have public health implications. Both providers and patients should be cognizant of the benefits social media offers to patients. Various platforms exist, ranging from microblogging on Twitter to public
forums like Medhelp, or social networking sites for patients like patientslikeme.com. To date, there has arguably been no easier way to facilitate discussion among those affected by a certain medical condition and establish communities, as well as identifying and accessing providers, support groups, and advocates. However, some have expressed concern of potential disadvantages. In addition to privacy concerns alluded to in the previous blog entry, some are concerned that patient-driven healthcare lacks accountability and that mass-sharing of anecdotes containing faulty medical evidence could be potentially hazardous. In case you're wondering, increased patient exposure to direct-to-consumer pharmaceutical marketing as a result of social media will be covered in Part 5!
Some additional details:
1. How are patients engaging in social media?
The adoption of social media by patients likely stems in part from a desire to gain medical knowledge, seek emotional support, as well as raise awareness through sharing personal journeys.
In fact, the IOM reports that 94% agree with sharing their health data to help doctors improve care, 92% agree to do so to help research, 78% to help drug companies learn more about their disease, and 92% to help other patients (though 76% were concerned their data could be used against them by other parties such as employers and insurers, as sharing on public forums is not HIPAA-protected). (http://www.iom.edu/Global/Perspectives/2014/~/media/Files/Perspectives-Files/2014/Discussion-Papers/VSRT-PatientDataSharing.pdf)
Just as providers have used social media to keep informed of the latest medical news and recommendations, patients can also easily access Twitter accounts of medical journals and experts (and perhaps their own providers, who may wish to interact with their patients and
provide educational materials through social media platforms). Certain applications also seek to utilize social media formats for improving delivery of care and enhancing electronic medical record systems (see #3 below). Data collected from these social media models have also shaped treatment, too. (see #4 below)
Cancer survivors are frequent subscribers to social media, and studies have demonstrated increased uptake of certain services such as mammography as a result of social media among cancer survivors. The act of sharing one's journey to surviving cancer could be a powerful way to cope with the diagnosis, and the advent of social media allows patients a forum to do so. The American Cancer Society and the Livestrong foundation have supported studies that seek to discern any therapeutic benefit through linguistic analysis.
By understanding how patients can benefit from social media, providers can suggest adjunct therapies and more readily gain insight into their patients' concerns.
2. What is the distribution of content?
In a study looking at 15 Diabetes support groups on Facebook, (with an impression of 480 users (which included patients, family, researchers, advertisers) and 690 comments, looking at 15 most recent post of 15 most recent topics) the break down is as follows:
66% of posts consisted of unsolicited sharing of personal info
13% Response to requested info
29% emotional support
27% promotional activity (often homeopathic, non-FDA approved products) often masked as testimonials
3% contained unsupported claims
Some view the promotion of non-FDA approved remedies and unsupported claims as a reflection of how patient-driven social media use can be problematic.
3. What are some common websites patients use to participate in
Hello Health is a healthcare model that utilizes social media in both their electronic medical record interface and as a HIPAA-compliant tool for patients to communicate with their providers. Providers can utilize Hello Health and patients can also can easily e-mail, text,
video chat with MD for a fee. (In 2011, 7% MDs reported participating in video chats with their patients) The platform also allows for bi-directional notification of lab results, for instance, which has raised concerns discussed in previous blog posts.
www.patientslikeme.com is another remarkable, freely-accessible website currently has more than 250,000 user profiles and offers tools that encourages patients to log their daily signs and symptoms and bloodwork results. Plugging this data into evidence-based disease criteria in conjunction with self-reported information from other patients, the website churns out data by condition (answering questions like "What are the common symptoms experienced by condition X" and "What treatments do patients with condition X say they are on?") and by treatment (answering questions like "What are the purposes people are taking medication Y?" and "What are the common side effects patients experience with medication Y?"). Such information helps patients to prognosticate for their own purposes and allows them to directly contribute to research and openly lend "power"
to clinical trials, so to speak.
In fact, data collected has reportedly generated 40 peer-reviewed articles on the efficacy of symptom improvement for ALS treatments. This data also allows providers and pharmaceutical companies to learn about various medical conditions from the patient perspective and gauge sentiment towards a medication. These findings were featured in a BMJ article (http://www.bmj.com/content/348/bmj.g368).
Some providers are wary of such a resource, however...(continued in #4, below)
4. How are providers responding to patient involvement in social media?
While providers may be supportive of social media as a tool for patients to build communities/reduce isolation and expand their support networks, there have also been concerns that have been raised.
Some physicians are concerned about the opinions of a vocal minority on physician rating sites could impact their practices.
Others are more worried about the creation of the "expert patient." While educating and keeping patients informed of their medical conditions and treatment options are part and parcel of one's job as a physician, patients' self-diagnosis and misinterpretation of medical information obtained online could be potentially dangerous to their health.