Health IT Pulse

Jul 6 2011   11:28AM GMT

Social media serves as a powerful tool for patients disclosing illnesses

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No matter the trend, social media has a role in some capacity. That’s the case for health IT as patients are increasingly disclosing medical diagnoses online for consolation purposes, according to a study released in late June by marketing and consulting firm Russell Herder.

The study was conducted over a 90-day period in which 62,893 online self-disclosures of illnesses were monitored. To obtain these self-disclosures, researchers tracked particular phrases such as “I tested positive for,” “I’ve been diagnosed with” and “Doctor said I’ve got.”

Patients tended to disclose certain conditions:

Cancer: 40%
Diabetes: 16%
Chronic Fatigue: 10%
Arthritis: 7%
ADHD: 7%
Asthma: 5%
AIDS: 5%
STD: 5%
Epilepsy: 2%
Heart Disease: 2%
Alzheimer’s: 1%

When self-disclosures were published varied by day of the week, too. The results showed that users reveal their illnesses on weekdays (average of 706 per day) 23% more frequently than weekends (average of 575 per day).

The results shed light on how communication channels display motivations behind self-disclosures. Patients used a mix of social platforms, including: blogs (51%), online message boards (30%), Twitter (7%) Facebook (7%) and other media (2%). Furthermore, the study noted that comments on blogs, Facebook and micro media such as Twitter may be the most direct indicator of the digital age’s impact on communication preferences with family and friends. By contrast, message boards are more inclined to offer support based on patients sharing similar experiences. Of course, it depends on the specific case and the immediacy of needing information.

From a patient perspective, getting support via social media could be convenient since it can be done without leaving home. And that’s why the results of the social media study do not surprise Dr. Robert Murry, medical director of informatics at Hunterdon Medical Center in Flemington, N.J.

There is closure to be found in connecting with others during a difficult time, Murry said. “Patients, particularly with rare chronic diseases frequently find value in social media dedicated to their disease.” Although he does not actively participate in these practices, he said he knew that social media would find its way into the health care landscape.

Even with its benefits, the arrival of social media raises awareness on issues such as provider boundaries, provider and patient relationships and the importance of social media policies.

What constitutes a medical visit? For example, if a provider views a patient’s disclosure of a chronic illness and responds in a chat forum, does that qualify as an appointment? Keely Kolmes, a psychotherapist in San Francisco, noted in her private practice social media policy that “casual viewing of clients’ online content outside of the therapy hour can create confusion in regard to whether it’s being done as a part of your treatment or to satisfy my personal curiosity.”

Malpractice concerns. This is a focal point since it deals with the delicate provider-to-patient relationship. Social media is widely used in provider-to-provider networking, but networking in the context of provider-to-patient is risky business because the conversation is often casual. Information can be easily misconstrued. If a patient is harmed based on advice from a provider — not to mention in an informal setting — it could be a malpractice nightmare. Also consider that if a provider gave advice based on a past patient’s medical record, it would violate the Health Insurance Portability and Accountability Act (HIPAA) regulations.

Social media policies. Adopting or creating a clear social media policy and making it accessible is important. Kolmes’ policy distinguishes which mediums she participates in, how she participates and also addresses privacy concerns. She does not accept friend or contact requests in any social media platforms, citing “that adding clients as friends or contacts on these sites can compromise your confidentiality and our respective privacy.”

For example, she uses Twitter to report psychology-related news and also writes a blog. She will not follow past or present clients on either medium. With patient privacy being her primary concern, Kolmes advises her supporters to take measures into their own hands — namely, using an RSS feed or a locked Twitter roll to avoid public links.

The study noted that tracking disclosures via social media channels like Twitter, Facebook and blogs was to see if those networks had an outpouring of self-disclosures comparable to other health-based networking websites designed for social interaction — such as,, and

The study demonstrated that one way for patients to find solace is to go online, which ultimately follows the trend of health care moving into the digital age.

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