Is Participatory Medicine Improving Patient Engagement?
"Nothing About Us Without Us!" was the battle cry of the disability movement of the 1990s. This slogan has now become part of the call of the invigorated participatory medicine movement. Stoked by the creation of ACOs and rewards promised to doctors for providing better health outcomes facilitated by patient outreach under the Affordable Care Act (ACA) participatory medicine is on the rise.
Sometimes called patient-centered medicine, participatory medicine is a growing movement due to in part the rise of patient education via the internet. E-patient is the common term to describe an online-empowered patient who communicates directly with doctors, does research about conditions online, participates in online condition-based support groups, and uses data portals via their doctor or their insurance company. The theory is that e-patients use these techniques and resources to help them to become partners with their doctors and thereby ensure better health outcomes.
What Do We Mean By E-?
Today's discussion on both sides of this modern wave of patient engagement, particularly centers on patient participation via the internet and self-diagnosis. Does the e in e-patient really stand for enabled to make their own choices, engaged in their own care, equipped with skills to manage their own condition, emancipated, equals in their partnership with their physicians or eager to learn more about their condition? Or does it simply best refer to electronic and point to an unstructured, catch-all for patients clicking a mouse and running with whatever the first web page they find tells them?
Based on my personal experience and research, the only way participatory medicine really works is if there is real communication between the patient and their doctor. I know that going online to look up a symptom I'm experiencing has not alway yielded the best outcome for me. Several times I was unnecessarily alarmed by what I discovered. However, I have found if I gather information about my symptoms, research possible reasons and treatments and then go to the doctor prepared to have a discussion about my symptoms, I am more satisfied by my doctor's care. What's empowering is being able to have a real and informed discussion about your body, instead of being dictated to.
I do realize that not everyone shares my enthusiasm for researching symptoms and discussing medical details with my doctor. However, as meaningful use principles continue to be implemented and electronic health records (EHR) become widely available, patients will be able to review and discuss their actual medical records with their doctors. Being able to print out a list of medications, easily refer to and be reminded of your last doctor's appointments and other bits of information will improve the communication between the doctors and patients.
Not Just Patients And Doctors - Offices Too
Additionally, a key patient goal for ideal use of the new technology tools is to improve the communication quality with not only their doctor, but with their medical practice staff. Improved communication will also help improve the online patient reviews that patients post about their doctors and their staffs together as a single experience. Patients who feel that the doctor and their staff genuinely care about them and their health will give higher grades based on the direct experience they have during their visits and during the on-going long-term care they are provided. Educating patients and sharing relevant news with them - through traditional and modern means - should foster a relationship that will benefit everyone.
Image courtesy of: nih.gov