Many of us in the patient safety world have heard the term “patient engagement,” but what does that term really mean? For me, it means knowing about the benefits AND risks of every treatment that a doctor recommends; not being afraid to question my doctor about whether a treatment or test is really necessary; and advocating for accurate and reliable public data on hospitals, doctors, and medical products. Engaged patients can help us fix the health care system so all patients are informed, respected, and told the truth. EngagedPatients.org, a new website launched October 1 by The Empowered Patient Coalition aims to “create a grassroots social movement to inform and engage the public to participate in their health care experiences.”
Julia Hallisy, founder of The Empowered Patient Coalition, said, “This project gives the public a vehicle to move the dial on patient engagement by standing united and being counted as members, by strengthening a social movement by sharing a common message, and by improving their lives and the lives of others through learning and action.”
Mary Ellen Mannix, who started james’s project and is a consumer member of The Pennsylvania Patient Safety Authority’s
Patient Voice Board, said, “Clinicians have regular access to an enormous amount of data regarding treatment options, safer care, and possible outcomes. In today’s complex healthcare world, the patient must have equal access to information.”
According to a 2013 study by Preetinder Singh Gill, engaged patients seem to have better perceived health outcomes. Patients are often underutilized resources in our health care system and it’s time for health care providers to catch up to the wisdom that’s held by patient advocates, many of whom have struggled through a health care experience themselves or by helping a loved one. Patients and family members can help out the medical team by being alert (as much as possible) and reporting anything that seems unusual. Patients and family members sometimes do report medical harm–we’ve collected thousands of horror stories over the past ten years that show how dysfunctional our health care system can be. When one thing goes wrong, many other problems often follow. But it shouldn’t be that way.
Time and time again, story sharers have told us they wish they had been informed before getting hurt, and maybe things would have happened differently. EngagedPatients.org is a great tool for taking action for your own health care. Pass it on so your friends and family can benefit too.
Now tell us, what does being an “engaged patient” mean to you?
For more information or to show your support, please visit www.EngagedPatients.org. Media contact: Julia Hallisy, info@EngagedPatients.org, 415-681-1011.