Derek Feeley is IHI President and CEO. He’ll be speaking about patient-centered co-design at the IHI National Forum, December 10-13 in Orlando, Florida.
I’ve just returned from chairing the UK’s first self-care summit. The health professionals, policy makers, and patients in attendance were full of ideas about how best to support people with long-term conditions so they can live well and be active partners in their care. To achieve this, one person noted that the relationship between clinicians and patients will need to shift from “the doctor decides” to “let’s negotiate.”
That struck a chord with me. Yet, it’s been challenging to get more control in the hands of the patient. I believe more patient-centered co-design is one way to do it.
What Is Co-Design?
When people hear about “patient-centered co-design” and wonder why the patient experience terminology keeps changing, I can sympathize. Just as you’re getting used to saying things like “patient-centered care” or “patient and family engagement,” someone comes up with a new phrase.
I see these changes in language as part of how our thinking is continually developing about the best ways to improve the patient experience. Tiffany Christensen, Vice President of Experience Innovation for the Beryl Institute, acknowledged this when she recently described the evolution of patient-centered care. She defined co-design as a way to identify both problems and solutions with patients to improve the quality and experience of care.
The key part is with — not for — patients. To me, patient-centered co-design means true partnership with patients. It’s about creating the care intervention or solution to a problem together, and then continuing that collaborative relationship as the caregiving continues. It means capitalizing on the expertise of clinicians, but also of patients, who understand themselves — their bodies, lives, and behaviors — better than their doctors do.
What Co-Design Can Look Like
While one can practice patient-centered care at the level of a single intervention — a visit with a primary care physician, for example — a co-designed patient intervention starts long before the patient ever gets into the exam room.
An intervention designed between a patient and clinician might start with an email exchange in which — after jointly assessing the situation — the patient indicates they’d prefer a call to a face-to-face visit. They talk by phone about the patient’s concerns and together decide the patient can monitor their symptoms, by themselves, for three days. In the meantime, the physician sends the patient the information they need to manage their own condition.
This entire conversation could take place before an empathic, high-quality, and patient-centered visit ever takes place. In fact, through co-design, we may discover that a visit isn’t required at all. The goal isn’t to eliminate visits, but to avoid jumping to conclusions about the best way to meet a patient’s needs.
False Assumptions about Co-Design
Some people are reluctant to engage patients in co-design when they hear about it. I believe this is because of the misapprehension that patients are going to ask for a lot of things the system is not capable of delivering. Health care leaders tell me all the time, “We’d love to engage patients in co-design, but we’ve got scarce resources. We’re nervous that patients will ask for the sun, the moon, and the stars and they’ll just end up disappointed.”
What I’ve seen runs contrary to this assumption — patients often ask for less than clinicians anticipate rather than more. The research on shared decision making (a form of patient-centered co-design) indicates that when you work closely with patients to make care choices, they often choose less invasive and less expensive interventions than if you leave the decision solely to clinicians.
Why? Because, as we are sometimes quick to forget, patients have lives outside clinical interactions. The treatment clinicians recommend may disrupt what matters most in their lives, like time with their families, their need to work, or their participation in their favorite leisure activities.
Or patients may be much more inclined to “wait and see” than clinical professionals. They may have a different perspective on the relative risks and rewards of undergoing a particular course of treatment at a given time. In co-design, the key is to talk with a patient to determine what matters most to them in relation to the whole of their life, not just with respect to the specific clinical intervention.
During my time at the National Health Service in Scotland, when we were trying to produce a better national strategy to help people self-manage their long-term conditions, I lost count of the number of patients who told me things like, “I understand that I need to have my blood sugar at a particular level, but what I really want to know is how can I get back to bouncing my grandchild on my knee.” Or, “I want to be able to take my dog for a walk. Can we figure out what I need to do so I can get back to that?”
How to Meet the Need
IHI President Emeritus and Senior Fellow Don Berwick has said to me many times, “All improvement is about meeting the need.” And to meet the need, we have to understand the need from the patient’s perspective.
A clinician’s time is scarce and precious. Health care leaders should protect the time it takes for clinicians to understand what their patients and populations really want and need. The best way to do that is through co-design, through asking what matters most and jointly determining how best to deliver the care that meets those needs. To do otherwise undermines the clinical relationship, disrespects patients, wastes time, and leads to overuse or underuse of care.
Leaders must prioritize patient-centered co-design. I understand that they have a whole host of priorities, but none of those will mean much in the end if we don’t deliver the best possible care we can in a way that is meaningful to our patients. We can’t achieve our shared purpose without co-design.