5 lessons from co-designing with patient partners

Sarah Brush shares insights on engaging KP members in a Learning Health System project to revamp chronic pain care

By Sarah Brush, research support specialist, Kaiser Permanente Washington Health Research Institute (KPWHRI) 

Kaiser Permanente Washington’s Learning Health System Program is working with care teams and members to design, test, and spread a new approach to chronic pain management. Launched at the Puyallup Medical Center in 2019, the Integrated Pain Management (IPM) project is now underway at the other 2 primary care clinics in Kaiser Permanente’s Tahoma District — Tacoma and Steele Street Medical Centers. The project will spread to 1-2 additional districts in the coming year. With a goal of providing whole-person care and safe alternatives to opioids, the IPM project is being designed around the needs of Kaiser Permanente members who live with chronic pain. Sarah Brush, who provides administrative and communications support for the IPM team, shares 5 lessons she has learned from working with the group of “patient partners” who are sharing their expertise as co-designers.

1. Hold empathy at the center of problem-solving

Empathy is generated by seeking to understand the feelings of another person. Empathy is a core principle of human-centered design, an approach that puts people who have a problem in a position to solve that problem using collaborative, creative thinking. Patient partners joined our Integrated Pain Management project in the summer of 2020 to lead our team in problem-solving by sharing their experiences and perspectives on receiving care at Kaiser Permanente. By listening to understand, with empathy, our team has homed in on the moments that matter in providing patient-centered care.

One of our first design challenges was to create educational pamphlets for patients about chronic pain and options for pain management. Patient partners told us clearly that the pamphlets needed to convey compassion for people coping with chronic pain and to specifically combat stigma against some pain-management strategies that they’d found helpful. For example, our team’s first draft of a pamphlet about opioid use stated that “opioid medications are not safe or effective for long-term pain management.” While this statement is factual, patient partners pointed out that people may feel stigmatized if they use prescription opioids for pain management or ashamed that the way they manage their pain is “not safe or effective.” So, we revised the statement to say: “Opioid medications not used according to the prescribed treatment plan may result in physical dependency leading to serious, life-threatening health issues.” Then we addressed the serious risks of opioids in more detail later on in the pamphlet.

This revision demonstrated understanding for patients who are currently prescribed opioids and creates a context for the goal of the program: finding safe and effective ways to manage pain. For our team, it was a wake-up moment: We were reminded that people who are experiencing a problem are the true experts in designing the solution — and that problems get solved when we listen, with empathy, for understanding. For me personally, I’ve learned to ask myself questions like, “What blind spots do I have, and how do they show up when I talk with someone about their pain?” and “Am I combatting or contributing to stigma against people who use opioids?”

2. Good design benefits everyone

It’s no secret that care teams are often burdened by complex and time-consuming paperwork. It turns out that same paperwork burden impacts patients, too. Improving a bottleneck in a care team’s process makes more time for providers to focus on patient needs. As a patient partner said, it’s important to recognize that providers and patients are “on the same team.”

Designing improvements to the care team’s workflow makes patient care better — just as designing useful tools for patients, like educational pamphlets, makes a provider’s job easier. In other words, everyone can benefit from designing for improvement with the patient perspective as the guide.

3. Language is the bridge for connecting

Pain is personal — and the language we use matters. Pain affects so many parts of life — physical, emotional, and social — and acknowledging these impacts is essential if we want to successfully engage patients in safe, effective chronic-pain care. A patient partner described the process of “learn[ing] to speak the same language” when talking with a doctor about pain can be like trying to meet at the same door in a long hallway; it takes thoughtful coordination to meet at the same place and understand each other.

For example, one patient shared that they felt more understood by their care team when they talked about what activities they were (or were not) able to do as a result of their pain, rather than talking about their pain on a scale of 1 to 10, which can mean different things to different people. Talking about life activities provided a way of describing pain to their care team in concrete, meaningful terms. Intentional language opens the door to understanding someone’s experience with pain and meeting their needs.

4. Mutual expectations are vital

Kaiser Permanente Washington created clinical guidelines on pain management and opioid use, and our project team and patient partners have been striving to include patient perspectives in the implementation of those guidelines. Unclear expectations and requirements for care, like an unexpected (and sometimes expensive) urine test or an urgent signature on a patient agreement, could feel punitive and might lead some patients to push back. Patient partners asked that expectations of the guidelines be communicated and explained clearly. As our project spreads to new districts, our team will continue to couple clinician and patient expectations, so they are truly on the same page.

5. “Respect me, know me, guide me”

Kaiser Permanente’s standards for our work (called “experience standards”) guide every employee in making care delivery and workplace experiences exceptional. These standards are centered on establishing trust and confidence (“respect me”), providing personalized care (“know me”) and ensuring understanding (“guide me”) — all of which are essential in creating an individualized pain-management plan. Patient partners shared that it makes a huge difference in their care experience when a provider reviews chart info ahead of a visit, remembers their family, and knows about activities that are vital to their happiness. Kaiser Permanente’s experience standards help us remember these values in our work together — keeping us focused on the best patient experience possible.​​​​​​