Editor’s Notebook: Participatory Medicine

November / December 2008
Editor’s Notebook

Participatory Medicine

In late October, I attended three conferences: Health 2.0, the Center for Connected Health symposium, and the annual congress of the Center for the Integration of Medicine and Innovative Technologies. Although these organizations have somewhat different audiences (Health 2.0 is more a community than organization), their conferences share a focus on technology, especially applications and devices that give patients new ways to manage their health and medical care.

They also share a focus on what is often called participatory medicine: the movement in which consumers — at all stages of illness or health — are beginning to take more responsibility for and participate more actively in their own health and in the medical care they and their family members receive.

Participatory medicine is a term broad enough to cover aspects of the safety and quality movement as well as disruptive innovations that comprise much of Health 2.0 and Connected Health. Early adopters of these disruptive products are participating by maintaining their personal health records at Google Health, Microsoft HealthVault, and WebMD; joining social networking communities such as www.ACOR.org and www.PatientsLikeMe.org; using specialized search engines to find medical information; and seeing providers through Internet-enabled visits at www.AmericanWell.com; by joining Hello Health in Brooklyn, NY, the “neighborhood doctors of the 21st century”; or by going to CVS MinuteClinics for care, after which they can download visit summaries directly into their Google Health accounts.

Many of these stories are about outpatient care and consumers with discretionary income, although some involve using iPhones to read medication barcodes and cellphones for disease surveillance in Peru. What does this have to do with improving safety and quality of healthcare in hospitals? To see the connection, we have to look beyond the disruptive, distracting, and cool new tools to the effect they have on relationships. The most proactive patients are using technology to force their providers — especially physicians — to view them differently, to allow them to participate, in the end, to treat them with new respect. Marty Hatlie and Sue Sheridan contribute columns to PSQH under the banner, Consumers as Partners. Their columns focus on the experiences of patients and families who have suffered injuries caused by preventable errors. Central to the column’s message is the principle that everyone deserves to be treated with respect, which is an underlying principle of participatory medicine, too.

The advantage of participatory medicine for hospitals and physicians is in having informed, engaged patients who may be more motivated to be honest and compliant. They will be able to supply accurate, thorough lists of the medications and supplements they take. They’ll provide a more effective second set of eyes to confirm that they’re receiving the right treatments. They won’t be afraid to ask if everyone has washed their hands. They’ll be valuable members of advisory boards.

Effective strategies for safety and quality improvement are often disruptive, especially in big institutions, and often involve recasting relationships among patients and clinicians. There is more disruption coming, enabled by consumer-oriented tools in the hands of patients who look forward to a new balance of power.

For additional information, please visit Health 2.0 at health2con.com, the Center for Connected Health at connected-health.org, and the annual congress of the Center for the Integration of Medicine and Innovative Technologies at cimit.org.