Social media has revolutionized how we to connect with others. Beyond the follower counts and number of “likes,” could the technology help patients achieve higher health states? Although the technology has been linked with suicide (pro-suicide as well as suicide prevention) and murder, the tools can also be used to help facilitate positive behavior change. In at least one publication, the technology has been successful in facilitating weight loss among obese patients with mental illness. A 2015 meta-analysis found nearly half of included studies shows some benefit for patients with chronic disease using social media (e.g., Facebook [disease-specific pages], blogs [learn from others who had the same experience], Wikipedia [factual information about diseases and treatments] and YouTube [learn about medical procedures] listed in a separate 2017 review).
Gamache-O’Leary and Grant propose a framework to consider social media in healthcare. They suggest five essential concepts of social media in healthcare: 1) easy patient-to-provider and provider-to-patient formal and informal synchronous communication and unencumbered collaboration, 2) providers to easily create and moderate high-quality, multimedia, personalized clinical content for patients, 3) patients to easily create and consume content, 4) patients to forge online relationships with minimal editorial control or oversight, and 5) patients to easily keep family and friends informed using the device of their choice. The authors suggest the challenge of finding high-quality information online could be addressed by online reputations of individuals posting content, much like Wikipedia. They argue that virtual communities created by social media in healthcare rely on four factors: 1) a critical mass of users, 2) an attitude of contribution, 3) business needs that are matched by community needs and 4) dedicated organization resources (disclaimer: UnitedHealth Group, my employer, recently purchased PatientsLikeMe.)
For some medical questions, the criteria to determine who might best meet a patient’s needs are clear. Social media could provide some signal for low-stakes interactions where the outcomes are immediate and clear. The CDC publishes assisted reproductive technology fertility clinic success rates by multiple factors that affect the success rate (e.g., maternal age, number of singleton births). Individuals can determine what clinics are most successful among patients most like themselves. Unfortunately, most of healthcare conditions do not have this level of information available for patients to review. Without these data, patients may rely on social media to obtain subjective information about a provider or clinic’s performance.
Many patients suffer with a symptom complex without a clear diagnosis. Social media could help those individuals identify diagnoses that may have been overlooked or providers who help patients reach a diagnosis. Rather than relying on most clinical trials with strict inclusion and exclusion criteria, peers in a social network may provide information about relevant comorbidities and social determinants that might affect the likelihood of one diagnosis over another. Clusters of patients could inform guideline-making bodies about how to adjust their diagnostic algorithms based on specific symptom, environmental and comorbid condition combinations.
After receiving a diagnosis, a medically-oriented social network could provide a patients more information about the likelihood the treatment either eliminating the disease or altering the disease course. Like the diagnosis example, peers outside a patient’s immediate geographic neighborhood could provide some sense of other treatment options and their success rates outside the physician-patient encounter. In addition to knowing how effective a treatment might be, the social network could provide information about others’ treatment preferences and long-term effects on quality-of-life. If other patients who undergo peritoneal dialysis allows them to continue to drive cross-country, I may be more open to a treatment that increases my risk of renal failure in the hopes that the intervention will address my primary condition.
Finally, social media could provide some context around the difficulty initiating and sustaining health behaviors to reduce the likelihood of disease complications adversely affecting one’s quality-of-life or premature death. These platforms could help patients better understand the natural history of a disease as well as the likelihood of developing adverse effects from prolonged treatment. For any chronic condition, social media could help a patient appreciate new norms that support a new identity (e.g., being diagnosed with diabetes) and its associated behaviors (e.g., blood sugar testing and insulin administration).
A health-related social media platform would have to have a few structural differences than what is currently available. Participants would need some assurances that their peers on the network were being truthful about their disease even if they might post under a pseudonym. Unlike Facebook or Instagram, the goal might not be to show one’s best self but to show how one might best manage a disease or symptom complex. Ideally, the information would not be sold to advertisers, pharmaceutical companies, employers or health insurance companies who might take advantage of the information shared on the network.
Even with a new approach, a health-related social media platform won’t address all healthcare-related challenges. Physical and mental health are only parts of the World Health Organization’s definition of health: state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Gallup created a Well-Being Index, a 50-item survey including five dimensions: career, social, financial, community and physical, that correlates with hospital admission and productivity. Despite this caveat, the possibility of using social media to help patients make a diagnosis, determine a treatment plan and adhere to a treatment plan long-term is worth exploring.