A few weeks ago, I read an article about a survey of patient engagement that led me to roll my eyes. How come? Its takeaway was essentially that an engaged patient is someone who’s used an online patient portal. Don’t get me wrong: portals are a great way for patients to access some of their own personal health information. I hope more patients and providers will use them. But portals are hardly the sum total of patient engagement. We should consider them a floor rather than a ceiling.
We need a broader, deeper, and more holistic view of patient engagement. A much better model is this Consumers Union Healthcare Value Hub infographic that depicts six dimensions of consumer engagement:
1. Self Care: self-managing a chronic condition (for example, dealing with your diabetes through nutrition, physical activity, and medication).
2. Choosing a Health Plan: identifying the plan that’s right for you in terms of coverage, costs, and provider network.
3. Choosing a Doctor: finding the physician or other provider that is the best fit for you across a range of measures: quality, cost, experience, education, personality, approach to care.
4. Choosing Treatment Options: understanding your diagnosis and treatment options and making informed choices about the associated risks and benefits.
5. Managing Medical Bills and Costs: seeking out information about the price of care and comparison-shopping where possible.
6. Advocating for System Improvement: having a seat at the table when it comes to decision-making, as a counterweight to the usual suspects of health care providers and payers.
This model isn’t necessarily the end-all and be-all of consumer engagement either, nor would I say that you have to tick every box to be considered an engaged patient. But it moves us way past just using an online portal. An engaged patient is one who is empowered to participate in their own health in whatever way makes sense for them.
An informal poll found that item 4—understanding and choosing treatment options—resonated the most with people as the essence of patient engagement. Patients should be active partners with their providers in defining treatment goals and preferences, reviewing the available options, and understanding the risks and benefits of the choices. And they should share decision-making with their providers. The best choice for one patient may be different from that of another, especially when you factor in personal priorities. What matters more? Is it the level of pain involved, the expected success rate, quality of life, survival rates, risk of complications, time off from work to recover, ability to ski again or play tennis, or something else completely? It’s personal, and health care is only truly patient-centered when it accounts for that. The research on shared decision-making is somewhat limited, but it appears promising: patients who participate in shared decision-making are experiencing better health outcomes, fewer invasive procedures and hospital admissions, and lower costs.
How else can patients be supported in actively engaging in their own care and working in partnership with their doctors? Recently, two Cleveland Clinic doctors wrote a piece for The New York Times with advice for patients on how to interact with their health care providers. “Ask us to use common words and terms,” the doctors suggest. “Summarize back what your heard.” “Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.” This is good advice; how often have you been in a doctor’s office and stared blankly, maybe nodding slowly, not quite getting what you’re being told? An engaged patient should feel comfortable asking as many questions as needed to ensure complete understanding of their diagnosis and treatment options.
But the onus can’t solely be on the patient. When you’re scared and sick, it’s hard to take in new information, and it’s hard to remember all the things you should ask. Engagement is a two-way street. Health care providers have a responsibility to use language that their patients can understand and to lay out options clearly. In fact, I would take the advice offered to patients by the two doctors in the New York Times article and flip it around. Instead of asking patients to “summarize back what you heard” from the physician, maybe the physician can summarize back what they heard from the patient in terms of their needs, preferences, and fears. Providers should start with evidence-based care but also be asking patients whether the recommended treatment fits with their lifestyle and priorities. Health care providers can help their patients weigh those concerns in context, but only if they ask the right questions.
Here’s another idea: OpenNotes gives patients access to their own visit notes written by their doctors, nurses, or other clinicians. When patients and their caregivers have such access, they better remember what was discussed during the visit and are more likely to take medications as prescribed and follow the recommended treatment plan. Studies show that OpenNotes enhances patient care without burdening physicians. And that’s key. Engaged patients don’t necessarily create an additional time burden. Three-quarters of providers participating in OpenNotes say that it doesn’t take more time to write and share their visit notes.
Patient engagement can and should be a win-win for both patients and their health care providers. Both need to be at the table as partners for that to happen. Providers need to be open to the idea of changing some of their own behaviors and practices to help patients better understand their condition and their options. Patients should feel empowered to take a more active role in their care, asking questions and taking greater ownership of their care. We need to move beyond health care portals, to a more ambitious vision of truly engaged patients who have the information, knowledge, support, and control they need to make good decisions about their own care.