Patient Engagement
Trendy Thoughts
Every other day I read an article about “trends in healthcare.” Newt Gingrich said recently that anyone claiming to know the direction of healthcare in the future should be thrown out on his or her ear. Well, I agree no one can predict the future with full accuracy, but here are some policy, research investment and practice change trends to embrace and promote!
- Prevention as a primary focus in health care
- Free health apps for patients and providers to share and monitor key metrics of health
- Patients involved in care planning, self-management, records review and research
- Providers and payers embracing fully integrated care
- Community health workers involved in care transitions and coordination
- Healthy behavior promotion
- Better stewardship — of drugs, diagnostics and treatments
- Patient-Family-provider Dialogue about end of life care
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.
Thou shalt…
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.
The Power of One
I read a recent first-hand account from an ER physician about her experience as a patient with disbelief, at first, and then with frustration. She had access to well-educated caretakers and a well-resourced facility, but suffered as the result of misdiagnosis and a distinct lack of patient-centric care delivery. Health care has been commoditized to the point that every “intervention” can be tracked and measured to determine whether it’s valuable for a patient. In the process, the equally vital element of humanity in health care is nearing extinction.
This doctor’s story is a reminder that patients have a vital and productive role to play in their care. And yet, for all the buzz about “patient-centered care,” the reality remains that unless an individual makes herself a pest or is lucky enough to have an advocate present, even the most educated and aware patient becomes the victim of inefficiency and detached neglect. Recent news about the years of neglect in the veteran’s health system is another example writ appallingly large. Growing obsession with metrics for value and “quality” are drawing resources and attention away from the “care” part of health. And with disastrous health outcomes.
In the midst of all the lofty debate (and more often arguing) about the cost of new technologies, drug A over treatment B, who should pay for insurance coverage and which hospital or physician offers the “best” care, we’re forgetting the fundamentals. Healthcare is a customer service. The patient is the customer. And, the first step toward a universal “culture of health” is simply, truly this: one person, offering one touch and taking one moment to ask “what do you need?”