Co-designing health care with patients: A how-to guide

LINCC design event participants Amina Moalim, licensed practical nurse with Kaiser Permanente Washington (left) and Laura Malarcher, LINCC project patient partner (right)

Dr. Clarissa Hsu writes about how her team equalized power between patients and staff in a quality improvement project

by Clarissa Hsu, PhD, Kaiser Permanente Washington Health Research Institute (KPWHRI) assistant investigator

Update: For more in-depth information about how Dr. Hsu and her colleagues piloted and evaluated a health care design process that includes patients as equal partners, please see their research paper, published May 27, 2019 in the peer-reviewed journal, Health Expectations.

Health care leaders increasingly seek patient input when they design and redesign how people get care. For such work to truly influence the real world of everyday health care, however, we need to do more to involve a greater diversity of patients, including people who don’t usually engage in this type of work. My research team piloted a patient-engagement technique that successfully recruited 12 people to collaborate with 11 primary care team members to design a new role to assist primary care teams.

I’m pleased to announce that based on our experience, we created a free guide and template documents to help health care systems replicate this innovative approach to meaningfully engaging patients in quality improvement projects. The resources are flexible, so people can choose among various tools for reaching out to patients who might not be activated, to encourage them to get involved, and to provide them with the training and structure they need to give meaningful input to their health care system.

LINCC: The basis for the guide

The tools we developed are based on our experience in the “Learning to Integrate Neighborhoods and Clinical Care” (LINCC) project. LINCC was funded by the Patient-Centered Outcomes Research Institute to design and pilot a new role in primary care teams to help connect patients with community resources.

To create the primary care team role, we set a goal of empowering patients to participate as equals with medical professionals in a co-design process. We noticed that other health care design processes that sought input from patients often asked a few people who were already active with the health system, for example as volunteer board members or advisors. Our approach was a bit different. Instead of approaching already activated patients, we recruited participants broadly, like we would for a focus group.

Critically, we committed to involving more than one or two patients: We wanted them to be at least half of our design process participants. Our hypothesis was that having equal numbers of patients and medical professionals would make the patients feel more comfortable and empowered to speak out and yield more honest, useful input.

Following a Lean rapid-process improvement model, we gathered patients and staff from two Kaiser Permanente Washington primary care clinics for a four-day design event. The result was a draft of all the tools needed to implement a new Community Resource Specialist (CRS) position for primary care teams, including a job description, training schedule, and templates for documenting encounters in the electronic health record. Follow-up activities for the design participants included a one-day event to “check and adjust” how CRSs were integrating into primary care and to evaluate the co-design process with surveys and interviews.

We piloted CRSs at two primary care sites and based on our evaluation, Kaiser Permanente Washington is now adding CRSs to all its clinics. I believe one of the reasons the CRS role works is because of thoughtful input from diverse patients with a variety of chronic conditions and clinical experiences. We gave our patient participants a strong voice in co-designing the new role and their perspectives were critical for our project.

Practical tips on patient-centered co-design

Our pdf guide to including patients as equals in primary care co-design contains practical advice. It walks through our design process: assembling a planning team, setting goals, recruiting and orienting patients, holding events, and evaluating final outcomes. We give examples from our experience, with details such as stipend amounts for participants. We offer free, modifiable documents such as event agendas. We also give general advice about overall goals for each step and broadly applicable lessons we learned.

In LINCC and in all my team’s research, we aim to improve care in ways that are truly meaningful to people who use the health care system. We believe this requires getting patient input that goes beyond surveys or other brief engagement techniques.

We welcome your feedback on our guide and template documents. Please tell us if you used the resources and how they worked for you. If you want to share your own experience with patient co-design, please leave a response below or contact me, Clarissa.W.Hsu@kp.org.

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