In healthcare, what gets measured gets done. This is particularly true as the use of value-based purchasing, alternative payment models, and consumer tools to compare quality expand in the U.S. Centering measurement on patients, and focusing on their needs, preferences, and values, ensures that what we measure really matters, not only to patients and their family caregivers, but also to the clinicians and health systems working to deliver the best care possible.
Recently, the American Academy of Hospice and Palliative Medicine and its partners the National Coalition for Hospice and Palliative Care (the Coalition), RAND Corporation, and National Patient Advocate Foundation (NPAF) developed two new patient-reported measures of care provided by outpatient palliative care teams. In a previous blog, we shared how our team integrated multiple perspectives throughout measure development by convening a Technical Expert Clinical User Patient Panel (TECUPP). The TECUPP included:
- individuals bringing lived experience with serious illness as a patient, family caregiver, or advocate
- professionals with expertise in measure development and research
- physicians, nurses, and physician assistants
- chaplains, pharmacists, and social workers
- and representatives of specialty societies and the healthcare industry
In this article we share lessons learned about how our team practiced transparent, comprehensible and timely communication to support co-creation among TECUPP members.
Communication is key to success
Building support for the measures required transparent, comprehensible, and timely communication. We ensured that all stakeholders had access to information that was easy to understand. We also provided opportunities for feedback at key points in the measure development process. For example, we provided regular updates to TECUPP members, field testing sites, project advisors, and members of the Coalition. We also provided newsletter updates, webinars, and presentations to a broader group of stakeholders.
We prioritized stakeholders who would be impacted if the final measures are integrated into the CMS Quality Payment Program. This included patient advocacy groups, palliative care professionals, medical specialty societies, and health system leaders. We invited stakeholders to ask questions, raise concerns or suggest improvements to the measures. Hearing this feedback throughout the development process helped our team develop better measures that are relevant to all stakeholders. These communication cycles helped our team iteratively refine the measures.
Sharing information
We sought to share information in ways that were accessible and meaningful to stakeholders. To do this, we developed plain language descriptions of the measures and how we were centering measurement on patients and caregivers in the development process. We also focused on two-way, inclusive exchange of ideas at critical points. To broaden our stakeholder reach and input, we hosted two public webinars. The first webinar was within the first nine months of our project’s start when we were recruiting for the field tests of our measures. The second webinar was 18 months later. After testing was complete we partnered with NPAF to promote broad patient and family caregiver participation in the public comment period. NPAF’s volunteer advocate network was key to getting feedback from often hardest-to-reach populations.
These activities yielded an enthusiastic response from stakeholders. We received over 200 public comments. Patients, family caregivers, and advocates submitted comments in numbers comparable to clinicians and other health care professionals. The public comments showed strong support for the measures. More than 70% of clinicians reported they would be very or somewhat likely to use the two measures. Patients, family caregivers, and advocates also reported strong support. More than 70% reported they felt the measures would capture information important to them.
Co-creating through partnership
Finally, we learned that we needed to work differently to co-create the new measures in partnership with TECUPP members. This meant they collaborated with our team to make key decisions about measure development, testing and plans for use. Rather than asking the TECUPP co-chairs to oversee discussions and seek agreement within the committee, we instead asked them to facilitate discussion. The co-chairs encouraged everyone to share their views, modeled active listening, and sought out differing opinions. This mindset shift from co-chairs as experts to co-chairs as facilitators ensured that our team heard from all perspectives. It created opportunities for everyone on the TECUPP to contribute in ways that blended technical expertise with personal experience.
We also learned that supporting co-creation and partnership required flexibility paired with sustained, intentional inclusion efforts. Designating specific members of our team to lead stakeholder engagement helped us do this consistently. It also helped us continually assess how well we were staying true to the goal of being patient-centered and adapt when needed.
Integrating multiple perspectives yields better measures
Our team developed two novel patient-reported measures of palliative care quality. The measures have strong reliability and validity. And by centering measurement on patients and family caregivers, the measures have support from across the palliative care community. In developing these measures, we followed best practices laid out in the CMS Measures Management System Blueprint while also bringing together stakeholders with both lived experience and professional expertise through a multi-stakeholder committee and frequent, two-way communication with a broader group of stakeholders.
This approach required commitment to patient-centeredness, flexibility in how we worked, and a readiness to adjust project plans in response to stakeholders’ recommendations. Ultimately, this collaborative process resulted in measures that both clinicians and patients rated as meaningful and ready for use. We found that by creating space within our process for making measurement patient-centered, we were inviting all stakeholders to collectively reach consensus on what to measure and where to focus quality improvement efforts. In short, engaging patient and family caregiver voices alongside traditional measurement expertise yielded a win-win for patients, clinicians, and healthcare systems.
Ellen Schultz
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