How Patients Disclose Medical Diagnoses Online

To understand how social media have transformed how patients communicate about their diagnoses, Russell Herder analyzed the prevalence and content of post-diagnosis conversations online.

People disclosed their conditions 23% more often on weekdays more than on weekends. Blogs were used by 1 in 2 of the self-disclosing patients, followed by online message boards, used by 30% of the patients. Facebook and Twitter were used by 7% each. Russell Herder surmise that blogs are used mostly by people who want direct communications with family and friends, versus people using online message boards who might be offering support of others in similar situations.

The most common conditions self-disclosed by far were cancer (40%) and diabetes (16%). Another 10% of people disclosed that they had chronic fatigue syndrome. The pie chart illustrates other conditions disclosed, each with 7% or lower percentages, such as HIV/AIDS with 5%.

But if you do the math, as Russell Herder has done, you find that people are more likely to disclose a diagnosis of HIV/AIDS online than cancer — although the raw number count of cancer self-disclosed diagnoses is much higher based on the raw number. And cancer is more frequently disclosed than diabetes. Russell Herder hypothesizes that there may be a correlation between the lethality of a disease and the likelihood that a diagnosed patient would publicly disclose their diagnosis online.

Within the cancer diagnosis, breast cancer patients tend to announce their diagnosis online more than people with other forms of cancer. The demographics of the disease may offer a clue as to ‘why?’ Women are heavier users of social media, and there are more online sites for breast cancer than other forms of the disease.

Based on these learnings, Russell Herder recommends that health providers reach out, craft language for support and health education, find ways to mentor patients online, and know the boundaries of social media with respect to provider ethics and appropriateness.

Health Populi’s Hot Points:  Recent surveys, such as one from Manhattan Research, find that more than 1 in 3 U.S. adults use social media online for dealing with health issues. The Russell Herder study adds to our understanding of how people are engaging more deeply, more intimately, with online tools in the Web 2.0 world. The company terms the phenomenon “Seeking Social Solace.” Susannah Fox of the Pew Internet & American Life Project, whose data are quoted in the RH report, calls the trend“Peer-to-Peer Healthcare.” Whatever words we use to describe the scenario, it’s growing and it’s a sign that more people are feeling more engaged in their health. This is yet another milestone on the journey toward Participatory Health.

Jane Sarasohn-Kahn is a health economist writing at Health Populi.