Participatory Medicine

The recent passage of health reform legislation has brought with it the promise of unprecedented change in the delivery of care in our country.

At the 4th annual Chronic Care and Prevention Congress in Alexandria, VA today Susannah Fox of PEW will be the closing keynote speaker.

Highlights of her remarks include:

• A national telephone survey conducted by the Pew Research Center's Internet & American Life Project finds that one-third of U.S. adults live with at least one of the follow conditions: high blood pressure, heart conditions, lung conditions, diabetes and cancer
• 62% of adults living with chronic disease have access to the internet, compared with 81% of adults who report none of the conditions named in the survey
• Once online, however, people living with chronic disease tap into an ever-widening pool of information including blogs, podcasts, doctor-rating sites and social network sites
• The internet does not replace health professionals, but rather provides a way for people to gather and share information in a rapid-learning system that can best be described as "participatory medicine"

The report Chronic Disease and the Internet  by Susannah Fox and Kristen Purcell discusses how the internet access gap creates an online health information gap. However, lack of internet access, not lack of interest in the topic, is the primary reason for the difference.

Once online, having a chronic disease increases the probability that someone will take advantage of social media to share what they know and learn from their peers.

When other demographic factors are held constant, having a chronic disease significantly increases an internet user's likelihood to say they work on a blog or contribute to an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems.

Living with chronic disease is also associated, once someone is online, with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts. These resources allow an internet user to dive deeply into a health topic, using the internet as a communications tool, not simply an information vending machine.

To learn more, please visit PEW Internet and American Life Project

Susannah Fox studies the cultural shifts taking place at the intersection of technology and health care.

Her survey research has documented The Social Life of Health Information as well as the role of the internet among people living with chronic disease. Health professionals, friends, and family members remain central, but Google and online patient communities are gaining in influence. Patients and the people who love them are not just a target audience, but a resource for innovation and knowledge.