Patient engagement has been all the rage this week. Health Affairs held a DC briefing for their February issue focused on the topic, highlighting new evidence that patients engaged in their own health care have better health outcomes and can possibly cost the system less.
Our own Amy Berman, a crusader for patient engagement, was on the planning committee for the special issue funded by several of our favorite colleague foundations (she also gave a keynote speech to primary care providers in Massachusetts on this very topic a few days ago).
One of the Health Affairs articles features The Conversation Project, a grassroots national campaign to get more people actively engaged in end-of-life health care choices with their families and loved ones, before a crisis occurs. Health care systems and professionals also have to be “conversation ready.” They must be able and willing to meet the wishes of these activated patients.
The incredible emotional complexity involved in this kind of patient engagement was written about over the weekend by Louise Aronson, author and head of the Northern California Geriatric Education Center, in a New York Times op-ed.
And at the Academy Health National Policy Conference I attended this week, patient engagement came up over and over again, often in the context of health information technology. From giving people access to their own health records and provider visit notes to simply being able to communicate via email with their doctors and nurses, health IT was trumpeted as a key to unlocking what some see as growing consumer demand to actively participate in health care.
The idea deserves the attention. It is absolutely critical for patients to be at the center of their care—engaged, activated and empowered. The Gordon and Betty Moore Foundation puts it very well in the description of their new half billion dollar Patient Care Program:
With meaningful engagement, patients and their families will:
- Understand the nature of, reasons for, risks and benefits of, and alternatives to the care they receive;
- Be integrated into the healthcare team as true partners with clinicians and other healthcare professionals;
- Participate in important care decisions; and
- Have the skills to manage their own health, when appropriate and when desired.
As good as this sounds, there are important questions that need to be addressed (as our colleagues at Moore well know). How do we tackle health literacy, cultural differences, and the digital divide, which all can exacerbate existing disparities as we ask more and more of patients? How do you design technology from a user perspective so that it truly makes self-care easier and not just a digital replacement for pen and paper? How do we help patients and providers navigate the incredible emotional complexity that comes with certain kinds of engagement, such as the end-of-life decision-making described by Louise in her op-ed?
While end-of-life care is certainly important to older adults, there is so much more to consider for this population and we need to take the time to fully understand their unique needs and circumstances. As we ask for more self-care, what about the potential burden and stress we are adding for frail, older people with several chronic conditions? How do we work with the often complex arrangements of family caregivers and surrogate decision-makers for older patients with cognitive impairment? Do we have the right tools for shared decision-making, tailored for complex older adults and other populations?
Engagement is a big and important step, and it requires us to really get to know those whom we want to engage.