Patients are increasingly influencing the direction of medical research, according to a recent story by NPR. This is exciting and promising news. But how about patients influencing the direction of their own medical care? Is there a lesson to be learned about that?

Profiling a parent who took over the medical research of her young childrens’ rare genetic disease, the NPR story described how patients are participating directly in the design of experiments. This gives them a stronger say in driving the outcomes they want. Because of the profiled parents’ self-driven exploration, they were able to develop a diagnostic test and potential therapies for their childrens’ disease.

The growth in patient directed research has extended to areas including arthritis and organ transplant, and is even starting to have an influence over the way the FDA approves new drugs.

We wish we could applaud the same progress in patient ownership in the world of medical care—particularly among patients with chronic illness like heart disease and diabetes. But unfortunately, chronic patients struggle to manage their own healthcare, and to be the captains of their health.

A recent survey showed that 73% of patients with diabetes reported difficulties in coping with their condition, and 66% felt their diabetes was not totally under control (HealthMine Diabetes Report). What’s more, 39% of people with heart disease report difficulty managing their illness/risk and 46% of those individuals say that knowing the right actions to take is the most difficult aspect of managing their condition (HealthMine Cardiovascular Report).

Part of the problem lies in patients being disconnected from their health data and from valuable tools to help them manage their disease. While roughly half of Americans suffer from at least one chronic condition very few–only 7 percent according to HealthMine’s 2016 Digital Health report–are using a disease management tool. Additionally, only 22 percent of patients using digital health are accessing electronic health records to help make medical decisions.

Motivation, engagement and education are other factors influencing patients’ involvement—or lack thereof—in managing their health.

Wellness programs can help bridge these gaps in care between provider visits and healthcare at home—helping individuals become the captains of their own health. By engaging members successfully in wellness programs, health plan sponsors can help champion higher quality and more effective healthcare for their populations.

[Photo credit: farmerdave8n via Creative Commons.]