by Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A
The Pew Internet & American Life Project (PIALP) released another series of interesting reports this summer. Published in June, the report, “Social networking sites and our lives,” examines social networking sites in a survey that explored people’s overall social networks and how use of these technologies is related to trust, tolerance, social support, and community and political engagement. Later this summer, several other reports were released which illustrate the profound impact social media sites have had on the lives of the American public. Among the headlines for these reports are startling statistics, 28% of American adults use mobile and social location-based services, 65% of online adults use social networking sites, half of U.S. adults use social networks such as Facebook, and young women are “power users” of social media sites.
As the Consumer Health Coordinator, I found the survey, “Mind the Gap: Peer-to-peer Healthcare,”3 the most fascinating. The rise of the e-patient in health care has been an interest of mine as the burden of managing one’s health has shifted from health professionals to the consumer. Susannah Fox (PIALP) delivered the results of this survey as part of a lecture series at the National Institutes of Health. These lectures explored a wide range of issues “at the intersection of research, evidence, and clinical practice” 3 where most health consumers find themselves; unsure they are making the best possible health care decisions. As the introduction to the survey summarizes, “peer-to-peer healthcare acknowledges that patients and caregivers know things – about themselves, about each other, about treatments – and they want to share what they know to help other people.”
As health information professionals, many of us are aware of some of these social sites that allow peer-to-peer health connections. One example I use in the Canny Consumer class is PatientsLikeMe.com. This site has over 115,000 patient users with 500+ conditions. Users can share their experiences by searching for others with a condition, symptom or treatment. As the site touts, you have questions about your disease but you also have answers for others, change your life while helping others change theirs.
This new form of participation in the online world is called the “new Zeitgeist of Participation” by the Pew report. This new zeitgeist of participation is transforming health care, political campaigns, news and the entertainment world. They compare peer-to-peer healthcare with the transformation of the music industry by allowing people to share what they know and as a result of two powerful forces: our ancient instinct to seek and share advice about our health and our relatively new ability to do it at Internet speed and scale.
We all will need health information in our lives for ourselves or our friends and families at some point. Health issues are scary and it’s good to know there are places we can go to share our experiences and get help from others with similar issues.
The following are some interesting statistics from the report:5
The report also identified the roadblocks and opportunities to taking this to the next level for consumers. Among the roadblocks, pockets of people are truly offline, which generally are people over the age of 70 or those living with chronic disease or disability. Another is the lack of awareness that online communities, information resources and other tools exist and can help make a difference in health outcomes. The opportunities include the fact that a life-changing diagnosis or other health event can lead to engagement. Caregivers, press coverage and word of mouth can spread the awareness. I would like to add health information professionals to that idea. We can make a difference whether we’re working with consumers or health professionals. By increasing awareness of health information resources, whether they are social or peer-reviewed, we can connect health consumers to information that can change their lives.