In today’s healthcare system, measurement influences everything from quality improvement to payments. So it matters greatly what gets measured. Measuring what matters to patients and their family caregivers will focus healthcare on their needs, preferences, and values.
In a recent measure development effort, we brought lived and professional experience together at every stage. We found this was a crucial element to making measurement ‘patient-centered’.
The American Academy of Hospice and Palliative Medicine (AAHPM) and its partners the National Coalition for Hospice and Palliative Care, RAND Corporation, and National Patient Advocate Foundation (NPAF), kept the focus on patients and family caregivers while developing two new measures that assess care quality provided by outpatient palliative care teams.
- These teams may include doctors, nurses, social workers, chaplains, pharmacists, and other health care professionals.
- Palliative care teams treat difficult physical and emotional symptoms for patients with cancer, kidney disease or other serious illness. These symptoms often include pain, shortness of breath, nausea and anxiety.
We engaged patients and family caregivers throughout this measure development effort. We included patients and family caregivers as members of an advisory panel. And we also reached out broadly to patient advocates to get feedback at key stages along the way. We found this engagement was not only doable, but actually made our measure development better.
Measuring What Matters
Measurement is an essential part of healthcare system accountability. Based on data reported by the Health Care Payment Learning and Action Network [PDF], roughly 90% of Medicare fee-for-service payments in 2018 were linked to quality and value, including through value-based purchasing programs and alternative payment models. These models rely on quality measurement to hold eligible providers, such as clinicians and hospitals, accountable for the quality of care they deliver.
These high stakes for measurement have increased the imperative – and opportunity – to align measures with the preferences and needs of patients and their family caregivers. Doing so is key to building a patient-centered healthcare system. Through its Meaningful Measures framework, the Centers for Medicare & Medicaid Services (CMS) prioritizes healthcare quality improvement and related measures on what is most important to patients, families and clinicians. Engaging patients and family caregivers in the measure development [PDF] process is essential to achieving this goal.
Applying its framework to the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), CMS identified a gap in meaningful measures assessing palliative care quality. To address this gap, our project developed two new patient-reported measures. We based these measures on what patients and family caregivers said are the most important elements of palliative care. For guidance in measuring what matters to patients and their family caregivers, we looked to principles for patient-centered measurement [PDF]. These principles call for measures to be patient-driven, holistic, transparent, comprehensible and timely, and co-created with patients.
Bringing Together Diverse Perspectives
To put these principles into practice, we convened a Technical Expert Clinical User Patient Panel (TECUPP). This panel included diverse representation from:
- 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 post, we explain how our team worked to make sure our new palliative care quality measures focused on what matters most to patients and caregivers. Key to this was bringing together lived experience and professional expertise through the TECUPP. In a second post next month, we will share how we supported co-creation among TECUPP members.
Centering Patients, Families and Caregivers
Being patient-driven means that patients’ needs, preferences, and priorities drive what is measured and how performance is assessed. We created opportunities for patients and family caregivers to shape key decisions in our measure development process. A key way to do this was ensuring they had substantial representation on the TECUPP. Of the 30 committee members, eight brought personal experience with palliative care as a patient, family caregiver, or advocate. Some also contributed other perspectives, such as clinical or quality improvement experience. Two members offered lived experience as their primary perspective.
We learned it was important to set aside time to support the TECUPP members’ participation. This ensured that each member felt comfortable in contributing to discussions and decision making. We especially focused on supporting the patients, family caregivers, and advocates on the TECUPP. An important part of this was acknowledging that power imbalances can arise in groups with differing kinds of expertise. Providing the opportunity for informal and social interaction was one way to help balance these power dynamics. For example, before the first TECUPP meeting we brought together the entire group for an informal pizza dinner. We used this dinner to break the ice and help TECUPP member get to know each other. We also avoided using titles or credentials.
To offer additional support, we checked-in with patient and caregiver TECUPP members between meetings. During these check-ins we asked for feedback to ensure they felt heard during group discussions. We also used these check-ins to talk through any additional support they might need.
A Holistic View
The TECUPP itself was an expansion of the traditional Technical Expert Panel. These typically include clinicians, researchers, psychometric and measurement experts. The panel provided a holistic view of palliative care that recognized patients and family caregivers – and the palliative care teams treating them – as whole people. This meant recognizing different circumstances, life histories, and experiences within and outside of the health care system. Discussions among TECUPP members brought together technical content with stories of personal experience. Integrating these perspectives highlighted why high-quality palliative care is so important to those experiencing serious illness and their families. This highlighted the interconnectedness of decisions about measure development and use.
Getting to Better Measurement
The two measure concepts that emerged from these discussions were:
- How much patients felt heard and understood by their palliative care team
- Whether patients got the help they wanted for pain from their palliative care team
Planning for measure implementation was beyond the scope of this project. But TECUPP members still prioritized discussing ways to ensure clinics use these measures to improve care. This included urging our team to ensure racial and ethnic diversity within our test sample. This diversity is important to make sure the measures accurately reflect the experiences of all patients.
Throughout the project, TECUPP members consistently asked, How will these measures ultimately improve care for patients receiving outpatient palliative care and their families and/or caregivers?
The diverse experts in lived and learned expertise on our TECUPP anchored our measure development work in what matters most to patients and their family caregivers. They also also provided a holistic view of outpatient palliative care. Next month, look for Part 2 of this blog series. We will share lessons learned about how our team practiced transparent, comprehensible and timely communication to support co-creation among patients, family caregivers, clinicians and measurement experts.
Ellen Schultz
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