The June 2013 issue of Pediatrics includes a supplement devoted to collaborative improvement networks. I contributed an article based on Pew Research Center data. Here is the abstract:
Although the majority of US adults has Internet access and gathers health information online, the Internet does not replace clinicians. People rate health professionals as their top source for technical questions such as diagnosis and treatment, but nonprofessionals (eg, friends and family) are rated higher for emotional support and quick remedies. For their most recent health issue, 21% of adults say they turned to others who have the same health condition; evidence of people’s interest in connecting with and learning from each other. People living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge; so-called peer-to-peer health care. Practical tips from fellow patients and caregivers can have far-reaching implications for clinical outcomes. As a parent of a chronically ill child observed: “We all work collaboratively, but I notice that my doctor doesn’t. After I’ve talked with my community online, I go back to him and ask, ‘What do your colleagues say about this issue?’ And it’s clear it didn’t occur to him to ask them.” Clinicians might do well to look into online patient communities and consider recommending them as resources for their patients. Clinicians might look at patient networks as a model for their own collaborative learning process as well. Linking the expertise of patients, families, and clinicians holds promise for further improving care and outcomes.
I am deeply grateful to the rare disease community for welcoming me into their lives when I was researching peer-to-peer health care, particularly the Moebius Syndrome Foundation and Nell Minow, who provided the stories which bring our data to life.
The full-text article, “After Dr. Google: Peer-to-Peer Health Care,” is available on the Pediatrics site.