The power and pitfalls of patient co-design in healthcare

Anyone who has submitted a Joint Commission document knows there are certain buzzwords that curry favor with evaluators. One of the most noteworthy is “Co-Design,” which can embody itself in dozens of ways depending on the program.  

This ranges from simply having a Patient Family Advisory Council (PFAC) that meets occasionally to offer opinions on their past experience with a provider. In the spirit of full disclosure, I happen to be a 100-day in-patient, Co-Chair of PFAC, and founder of the PFAC-tor Awards, recognizing excellence in such co-design processes.  

Some providers pay lip service to co-design as it is simply part of a check-off list, on the other end are patients who have actually been deeply integrated into the PX design process with “credentials” equal to those of full-time employees in the healthcare enterprise.  

To level-set, patient co-design, also known as co-production or co-creation in healthcare, involves patients actively participating in the design and improvement of healthcare services. This approach ensures that care services align with the real needs and preferences of patients and their families.  

Lest we forget, many patients were “not there” during some critical aspects of their high acuity care, so the family members actually were the guardians of the patient experience. Co-design can not occur without their insights.  

Several factors influence the effectiveness and success of patient co-design: 

Patient engagement and empowerment

• Willingness to participate: Patients need to feel that their voices matter and that their contributions will impact the outcome. This often involves building trust.

• Health literacy: Patients with varying levels of understanding of healthcare processes must be included, and materials or methods should be accessible to them.

• Diverse patient representation: Ensuring diversity among participants (in terms of age, ethnicity, socioeconomic status, and health conditions) allows for a broader perspective.  This is perhaps one of the greatest challenges for PFACs, as much of the most critical PX insight must come from those who have limited command of the language unless there is accommodation. The recruitment and retention aspects are onerous. 

Collaboration and communication

• Interdisciplinary collaboration: Healthcare providers, designers, and patients must work together. Open, transparent, and respectful communication is essential. However, providers are overworked and understaffed, so labor-intensive co-design becomes an extreme challenge

• Feedback mechanisms: Continuous feedback loops between patients and providers ensure that ideas are refined and outcomes are evaluated. Since feedback loops are aspirational in many providers, embedding them into a separate co-design process takes great energy and political capital. Keep in mind many caretakers never see or hear from their patients after discharge, in the best of circumstances. Random PFAC members are the best they can have

• Equal power dynamics: Reducing the power imbalance between patients and healthcare professionals is crucial. Patients should feel like equal partners in the process. There is always the not-so-subliminal feeling that the patient is an outsider peeking in when, quite frankly, the opposite is true.
   

Flexibility in the Design Proces

• Iterative process: Co-design should be flexible and iterative. Ideas should be prototyped, tested, and refined with patient feedback

• Adaptation to patient and family needs: The design process should accommodate the varying needs of patients, such as time constraints or emotional/physical capabilities.
   

Organizational support

• Leadership buy-in: Successful co-design requires a strong commitment from healthcare leadership to support patient involvement and act on insights. Many get very anxious about bringing “outsiders” into an already siloed innovation process

• Resources and infrastructure: Adequate resources, such as time, financial support, and staffing, must be allocated to co-design efforts. In an under-resourced environment, this is perhaps the key challenge.
   

Ethical and Confidentiality Issue

• Patient privacy: Co-design processes must ensure that patient information and stories are used ethically and confidentially

• Consent and voluntariness: Patients should fully understand their role in the co-design process and participate voluntarily

Technology and Tools

• Use of digital tools: Digital platforms can facilitate co-design by enabling wider patient participation, especially for those who may not be able to attend in person. The digital equity considerations can be challenging given the unevenness of technology and infrastructure access for the most important co-design stakeholders.  

When these factors are thoughtfully addressed, patient co-design can significantly improve healthcare services, leading to more patient-centered, efficient, and effective care.