There are many ways for patients to become more engaged in health care.
“People go through stages of becoming aware that they could participate,” says Peter Margolis, a professor of pediatrics at Cincinnati Children’s Hospital Medical Center.
Many patients are still getting used to the opportunities available in the culture of medicine, where even a generation ago the prevailing thought was that someone without a medical license might not have anything to offer, said patient advocate Dave deBronkart. “When we discover something is newly possible, it doesn’t mean all of a sudden everyone is capable,” he said.
Margolis thinks that some people may come to participate in health care in the same way they post to Wikipedia or Trip Advisor or Zagat. “We’re trying to build that kind of awareness and provide opportunities to allow people to participate in lots of different ways,” Margolis said.
Here are a few:
Discuss your needs. “Gather up with your friends and family and talk about what you want out of health and health care,” said Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minn. “Health care can be improved, it can be changed,” he said. “While you’re still healthy enough, you have a role to play to make health care much more careful and kind and responsive to your needs.” You should step up and speak up, getting involved in change, he advises.
Engage your doctor. DeBronkart suggests you set a tone of give and take with a new doctor by saying, “I’m the kind of patient who likes to understand as much as I can about my health. Can I ask some questions?”
Help manage your own care. Ideally, individuals can manage their health by seeking reliable online information and online support communities, by self-monitoring (weight, blood pressure, etc.) in some circumstances, and by maintaining a healthy lifestyle, said Danny Sands, a Harvard Medical School assistant professor who co-founded the Society for Participatory Medicine. When you need to interact with providers, try to share information and decisions with mutual respect, Sands said.
Ask informed questions. Refer to the “Choosing Wisely” campaign, which offers information and questions that patients and providers should discuss on a range of health issues, including the necessity of various medical tests and procedures.
Join an online patient community. If you or a loved one is battling a major, chronic or rare illness, access and share information on sites such as Smart Patients, PatientsLikeMe and Inspire.com. Read the site’s mission statement and choose a community you find welcoming, with a culture based on sound medical evidence and on transparency regarding funding. With even your first posting, you’ll be able to tell how an online community embraces its members, says Gilles Frydman, co-founder of Smart Patients. Your doctor may be able to help you choose a good fit.
Join the quality improvement team at your local hospital. More and more hospitals are creating advisory councils that seek patient and caregiver input to improve care.
Volunteer to be a patient peer reviewer. The BMJ invites patients living with disease, caregivers and patient advocates to comment on research, education, analysis and commentary articles.
Help set research agendas. Contributions from patients and caregivers are critical to the mission of the Patient-Centered Outcomes Research Institute. There are several ways to get involved with PCORI: suggesting a patient-centered research question, providing input or reviewing funding applications. There are also opportunities to join advisory panels on subjects such as treatment or patient engagement.