Policy & Measurement: The Impact of Patient & Family Involvement

By Rosie Bartel 

This is the sixth blog in a series of eight by The Beryl Institute’s Global Patient & Family Advisory Board (GPFAB). The intent of this series is to present our perspective on patients’ and families’ lived experience through each of the strategic lenses of The Beryl Institute’s Experience Framework. The Experience Framework is a community-developed tool that acknowledges the integrated nature of healthcare experience and is comprised of eight strategic lenses that help shape patient experience efforts. 

The Why 

Experience is driven and influenced by external factors and systemic and financial realities and requires accepted and understood metrics to effectively measure outcomes and drive action. 

Patient & Family Impact 

 When policies are designed with respect for the lived experience of patients and voices of patients and families carry weight equal to survey data, the implemented metrics become meaningful, and patients and families experience a feeling of organized and considerate care. 

Commentary 

The Policy & Measurement perspective is crucial for patients and families when engaging with healthcare organizations. Their lived experiences play an essential role in shaping policies and how those policies are assessed by healthcare institutions.  

Globally, patients and families are increasingly being invited to co-create policies and collaborate with researchers on measuring their effectiveness, ensuring that care is more aligned with real-world needs. Here are examples of how patients and families are experiencing this lens: 

• Patients and families are taking part in focus groups or listening sessions with researchers about their lived experience. 

• Patients, families, and care partners are actively involved in Technical Expert Panels (TEPs) based on their lived experiences. While they do not need to be measurement experts, their personal experiences provide valuable insights that contribute to the development of measures alongside medical and data experts. Their voices matter. Their perspectives are essential and greatly influence the co-creation process.  

• Patients, families, and care partners are often invited to work with policymakers to move measures into policy. Today, most policy development groups must include individuals with lived experience when they are developing a new policy or evaluating the value of existing policies. 

• Patients and families can influence policy and measurement by responding to public comment on policies up for review. The new patient safety and age-friendly structural measures, up for review with the U.S Centers for Medicare and Medicaid (CMS), have been passed for 2025. The influence of the voice of patients and families made a difference in the passing of these measures. Volume is crucial for CMS, because they must review every comment submitted by all parties. Organizations like Patients for Patient Safety-US, Light Collective, and Patient Experience Policy Forum (PXPF), among others, draft comments that help patients and families share their perspectives on policies and measures. Currently, many groups are seeking public input on AI and healthcare, making it imperative that patient and family voices are included in these discussions. Their contributions ensure that their needs and concerns are represented in the evolving landscape of healthcare policy. 

When organizations do not prioritize these strategies, it results in policies and measures that fail to adequately incorporate the patient voice and the lived experiences of patients and families. This oversight can lead to guidelines that do not fully address or reflect the real-world needs and challenges faced by those directly affected by healthcare decisions.  

Policies and measures developed without the patient voice are very one-sided and often do not meet the needs of patients. A prime example of this oversight is the initial visitor policies implemented at the beginning of the COVID-19 pandemic. Care partners were classified as visitors rather than integral members of the care team. This misclassification led to significant physical and emotional complications for patients, as they were deprived of crucial support and advocacy from their care partners during a critical time. 

In response, The Beryl Institute’s Global Patient and Family Advisory Board (GPFAB) created a care partner guide, “We Are Not Visitors,” which shared ways to always improve the visitor policy for care partners during a crisis – or any day. The PXPF began working with the GPFAB care partner workgroup to develop a policy standard for organizations to include the care partner as part of the patient’s care team. This is how patient and families with lived experience influenced a policy that had caused many patients and families not only stress but, in some cases, harm, because the care partner was not in the room. 

Conclusion: 

The policy and measurement lens might not initially appear to be a space for patient and family involvement, but it actually provides some of the most impactful opportunities for engagement and co-creation. By participating in these areas, patients and families can shape policies and metrics that directly affect patient outcomes, ensuring their perspectives are woven into the decision-making process. 

This is one of the areas where the patient and family voice is extremely critical to long-term quality improvement for all patients. When the lived experiences and voices of patients and families are given equal weight alongside medical and data experts, the resulting policies and measures are more meaningful and effective. This balanced approach ensures that policies are better aligned with real-world needs and have a greater potential to improve patient outcomes. 

About the Author

Rosie is a widow, mother, grandmother and an educator. In August of 2009 she underwent a total right knee replacement that developed into a MRSA staph infection. This healthcare-acquired infection has led to 58 surgeries, over 200 hospitalizations, 100 blood transfusions, a right leg amputation six inches above the knee, and a total hip amputation with the removal of part of her pelvic bone. Rosie has experienced sepsis and septic shock fourteen times in her health journey.

As she continues to battle this infection in her body, Rosie is driven to share her story of survival. Every day she uses her story to advise or advocate for others. She believes in helping patients and caregivers find their voices. As an educator, she has used stories to teach children and adults. Today, she uses her story to co-design with medical professionals and researchers and to advise and advocate for patients and their caregivers. She was a recent speaker at the International Forum on Quality & Safety in Healthcare in Copenhagen.