Ten Commandments of (Authentic) Patient Engagement
I had a great conversation yesterday with a kindred spirit who is passionate about the importance of patient engagement. Not the “sound bite” version that has permeated policy and public dialogue and given rise to a new industry of apps, tools and “solutions.” Rather, I refer to the authentic, daily empowerment of patients in their health care.
It seems we’re obsessed with finding “the best way” to engage patients in research, shared decision-making and giving feedback about care quality (i.e., patient satisfaction). Sounds good, but scratch the surface and try to find a common definition of what it really means to engage and activate a patient. Many scholars and PCORI-funded researchers are pondering this and even CMS is seeking public comment on the issue. While we wait for those efforts to bear fruit, here are my “ten commandments” for patient engagement in health.
1. Treat me as a whole person. I’m not just an afflicted body part/organ or chronic illness.
2. Know my “story.” Learn about my family or lack thereof, my culture, my “growing up,” and my daily reality. I am more than a medical history.
3. Speak my language. Looking beyond obvious availability of translation when needed, talk to me about my health and my choices in a way I can understand. When I am ready, be forthright with me about health and illness. Include my supporters in helping with this – they already speak my language.
4. Include me. Make me a part of the team. Include my family and caregivers in the way that I request. I have ideas about the care I (and my family) need and what will work best for me. My goals and preferences are important even if they aren’t proven in a randomized-controlled trial.
5. Show me/talk with me about all my options for care. You might have a preference, but I can decide better what is right for me if I have all the information, including cost. Build in time for me to discuss and consider my options with my family or supporters.
6. Ask me what is important. What are my goals, desires, and wishes that my good health would help me achieve? These are powerful motivators to my participation.
7. Learn with me. As my health changes, find ways to allow me to change my mind about what I want. Be willing to change my care plan based on my experience (good or bad).
8. Help me record my questions and my care plan. Work with me to document treatment options, home care instructions, and define questions for our next visit.
9. Stay connected with me. Check on my progress and how I’m doing. Knowing someone cares builds our trust relationship and motivates me to do my best to get, and stay, healthy.
10. Say Your Sorry. If you miss something, make a mistake or violate one of the commandments, take ownership and learn. Be open to and enthusiastically invite my feedback.
These apply to us all, regardless of our role in designing, delivering, paying for and receiving health care. Until we universally believe and abide by these commandments, a health system that authentically engages and empowers patients will not exist.