Moving from Patient-Centered to Patient-Led

 Patient Engagement “how to”s

for Co-designing and Co-creating Solutions

The words “patient-led” and “patient engagement” have made me squirm a little in the past. And this, despite believing and using shared-decision making in my exam room and having staff members who are also patients. What assumptions are behind these feelings?

·      We think patients will be unreasonable with their demands

·      We think it will turn into a complaint-fest

·      We think the patient will represent too narrow of a perspective

·      We think they can’t understand what’s going on

·      There is complexity of navigating the patient relationship as both doctor and colleague

·      We’ve never done it before

At the ICHOM 2024 conference, I had the opportunity to grow my understanding of patient engagement. I spoke informally with Dr. Berhane, director of the Dell Children’s Comprehensive Care Clinic specializing in children with medical complexity, Lauren, a parent of a child in this clinic and patient-advocate of the clinic, and Eva Villaba, an oncology patient advocate. I gathered some excellent information from sessions by the previously mentioned individuals as well as Susannah Fox and Dr. Laura Cooley. These and others provided an excellent primer on the importance of and the “how to” of patient engagement. Patient engagement can take a variety of forms, including board members, co-researchers, or membership in a patient workgroup to co-design care solutions. Community Health Centers are a good example of patient engagement through patient boards, which typically function to set the direction of care (rather than the operations and design of care). Two things were fundamentally clear: patient engagement takes intentional work, but it is good work.

Why should we value patient engagement? Here are some advantages of patients as co-creators and co-designers of their healthcare:

·      It provides direct sourcing for understanding unmet needs and keeping patient needs visible. Patients and families are experts at their own lived experience of disease.

·      Desired health outcomes by patients become the new design criteria for solutions.

·      It teaches us to think from the outside-in, creating value first and fundamentally at the patient level.

·      It shifts the conversation from the idea of “treatment” to “solving the problem.”

How do we go about intentional patient engagement? Here are 3 key steps for the strategy and operationalization:

1. Foster a culture where there is “nothing about us [patients] without us.” Understand your organization’s “why” for patient engagement.

2. Define patient engagement for your organization, and how it is different from patient experience data. Are patients consultants? Are they symbolic, present to give token approval? Or is it an ongoing sustaining partnership, where patients have equal voices, power and leadership roles?

3. Operationalize patient engagement.

   1. Select a patient representative

      • Interview for the right person and have criteria to guide selection

      • Select for a patient with the condition for which you are developing a recommendation or solution. Consider specific segments for project needs, e.g. someone just diagnosed with a disease vs someone living for many years with the disease.

      • The patient should be able to connect to multiple patient perspectives, not just their own lived experience. However, we can’t expect them to represent everyone. A key opinion leader or one who is connected to a larger patient organization can provide access to other perspectives as well. Consider other methods to incorporate multiple viewpoints if more diversity of perspective is needed (surveys, focus groups).

      • Set clear expectations of what the position involves, the time commitment, and compensation or if voluntary in nature. Including a stipend acknowledges the effort, time and sacrifice patients are making. If everyone else is getting paid, why shouldn’t they?

      • Advocacy experience can be helpful, but define whether this is an advocacy role or broader (e.g co-research, co-designer).

      • Recognize patients may bring other vocational skills as well to the table (e.g. as an engineer, a teacher, a researcher, etc).

   2. Ideally involve more than one patient

   3. Provide training to the participant(s)

   4. Set group norms for all participants (e.g. how conflict will be resolved, how to reduce power differences)

   5. For larger patient groups, consider a lead or liaison patient representative

   6. Write a charter of how the patient representative(s) will function within the decision making of the practice. The type of group will likely determine the structure and oversight/administrative levels involved (e.g. a ‘board’ is a more formally operating structure than a ‘workgroup’).

After learning these practical “how-to” steps, I felt more prepared to engage patients in the next quality project. I also wondered, “How did I miss this for so long?” When I think about the motivation for patient engagement, as challenging as the undertaking may be, it makes total sense.

For more resources on increasing patient engagement, check out the organization Patient-Focused Medicine, and specifically their PEM (Patient Engagement Management) Suite. https://patientfocusedmedicine.org