Patient engagement has been described as the “Blockbuster Drug of the Century.” But can one effectively work on engaging patients, redefining the role of the patient, and redesigning healthcare tools, without engaging and designing for clinicians as well?
I don’t think so. That’s because my vision of ideal health care is grounded in the idea of constructive collaborative relationships between patients, caregivers, and clinicians, in which clinicians serve as expert consultants in helping patients meet their healthcare goals. This is especially important in geriatrics, which emphasizes an approach based on thoughtful individualized care, tailored to the patient’s medical condition and preferences.
But as I’ve been following trends in healthcare innovation for the past six weeks, I’ve repeatedly come across patient-centered projects which seem…well, overwhelmingly patient-centered.
As in, the viewpoint of clinicians who would presumably be interfacing with these engaged and empowered patients seems a bit under-represented.
Here are two examples:
- The Patient Health Record Re-design Challenge. Having correctly noted that the VA’s Blue Button output is hard to read and resembles a receipt from 20 years ago, people are invited to redesign the patient health record. The goal is to improve usability and layout. An expert panel will judge. However, although one of the four stated design goals is to “Enable health professionals to more effectively understand and use patients’ health information,” when the challenge was recently promoted on Twitter, the panel of 8 reviewers included designers and healthcare innovation thought leaders, but not a single clinician. (Note: I inquired about this on Twitter, and was told that physician reviewers will be announced later this week.)
- TEDMED’s “Role of the Patient” Great Challenge. Among other questions, this challenge asks that people consider “How is ‘power’ shared among all stakeholders and how should it be shared?” This is an extremely important issue and I’m glad to see TEDMED addressing it. But I was surprised to see that the expert team assembled to lead the discussion doesn’t very obviously include a practicing physician. (I initially thought there was no physician at all, but then realized that Ted Eytan, listed as a director at The Permanente Federation, is an MD and family physician. I assume it’s an oversight that his degree isn’t listed on the team page, and it’s unclear to me whether he is still practicing.)
I love both these projects. Still, I would like to see a more visible engagement with the practicing clinician’s perspective, and more emphasis on how to get the average clinician to work more effectively with a more engaged patient.
Why bring in clinician perspective when solving for patient engagement?
Let’s consider the two examples above.
For the patient health record project, the primary goal is to give patients a version of their record that is meaningful and helpful to them. However, it’s also expected that patients will be bringing these records to other clinicians. So the record really needs to be designed to serve two key categories of user. I’m very glad the project is planning to bring in some physician reviewers. In particular, I hope the group will bring on more than one clinician, as there are several different clinical arenas in which physicians need to review lots of external medical information. The ones that jump to my mind are: primary care providers for complex adults, emergency room physicians, and hospitalists. All three groups routinely need to review a comprehensive patient record, but will have somewhat different needs and priorities as they try to help patients.
I also hope this group will push the designers to design for medically complex patients. Solve for the tough and common scenarios (i.e. Medicare patients with DM, CHF, COPD, OA, and CKD), not just the easier scenario of the healthier younger patient. Make sure that patient record really does work when the patient has a lot of medical problems going on.
As for the TEDMED Role of the Patient project, it seems clear that the role of the patient in large part represents a complement to the role of providers. I don’t see how you can talk about one without the other. However, a tricky issue here is that we overall need physicians and other providers to change the way they see their role, so we should be careful about working around physicians as they are. (A story I’ve heard more than once: some physicians respond to empowered geriatric care managers by condescendingly asking “When did you graduate from medical school?” Ouch.) Physicians have also historically dominated healthcare, and I suspect that many patient-centered projects pull away from physicians in order to get as far away as possible from the paternalism and physician-centrism that still exists in medicine.
Still, in the end, when it comes to complex shared decision-making and constructive collaboration, patients will need to work with physicians, and other clinicians. So it should be important to include physicians in these conversations, preferably physicians who have experience in fostering change among other physicians, under real-world conditions. (Tom Bodenheimer and Gordon Moore come to my mind; both have spent a lot of time thinking about how primary care doctors actually practice under real world constraints.)
In summary, if patient engagement is a priority, let’s design solutions that work for patient AND help clinicians become the partners patients need and want us to be. After all, when patients engage, they engage with clinicians, so it’s good to bring pragmatic clinicians to the problem-solving table. (Also good to think about leveraging clincians’ intrinsic motivation.)
Last but not least, if you’re wondering what exactly patient engagement is, and whether it’s the same as patient empowerment, I like this definition which I found in a 2011 article from the American Journal of Public Health:
Patient engagement describes “active participation in health care,
including accessing appropriate care, attending and preparing for
appointments, and using additional available resources to maintain a
high level of involvement in care.” (The same article is actually about
health care empowerment, which it describes as “as the process and state
of participation in health care that is characterized as (1) engaged,
(2) informed, (3) collaborative, (4) committed, and (5) tolerant of
uncertainty.”)
You may also enjoy this RTI white paper on “Patient Empowerment and Health Information Technology,” prepared in 2011 for HIMSS.
Update 11/30/12: The Patient Health Record Re-design Challenge now has three internal medicine physician reviewers listed: Henry Wei MD, Presidential Innovation Fellow; Farzad Mostashari MD from ONC, and Sophia Chang MD MPH from CHCF. Yeah! Can’t wait to see what the winning design looks like. We need more projects like this, to make things more usable for patients AND clinicians.
