1. The technical expert/clinical user/patient panel (TECUPP): centering patient and family perspectives in patient-reported measure development.
- Author
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Marsolais, Elizabeth, Anhang Price, Rebecca, Berdahl, Carl T., Shenk, Anton, Schulson, Lucy, and O'Hanlon, Claire E.
- Subjects
MEDICAL quality control ,PATIENTS' attitudes ,PATIENT experience ,CAREGIVERS ,PATIENT-family relations - Abstract
Patient and caregiver perspectives are increasingly incorporated into health care research and policymaking, but their inclusion in the quality measure development process often is not robust. We describe a stakeholder panel model for incorporating patient/caregiver voices in the development of patient-reported measures, the Technical Expert/Clinical User/Patient Panel (TECUPP) model. This model is characterized by significant or equal representation of people with lived experience of the disease or condition (as patients or caregivers) to the clinicians and others with technical expertise who typically comprise technical expert panels. We report key design features of the TECUPP model and how we used this model to develop survey-based patient experience measures of timeliness of cancer diagnosis. We describe benefits and challenges of using the TECUPP model and considerations to guide others who might use it as part of developing patient-centered quality measures, based on our experience convening a TECUPP to inform development of a patient-reported measure on timeliness of cancer diagnosis. Benefits include creating space for significant contributions from patients/caregivers and development of a shared understanding of patient experiences and observability of measure domains between clinicians and patients/caregivers. Challenges include time management and managing conversations outside the project scope. Measure development efforts implementing this model should consider recruiting diverse individuals, scheduling short and frequent meetings, enabling participation from all TECUPP members, developing accessible pre-read materials, anchoring meetings with patient stories, and encouraging multiple communication modes. The TECUPP model promotes discussion and understanding by patients/caregivers and clinicians/measure experts helpful for development of survey-based patient-reported measures. Plain English summary: Patient and caregiver perspectives are often considered in health care research and policymaking, but are not always meaningfully included when developing metrics for assessing whether health care provided is high-quality or low-quality. We describe a new type of stakeholder panel for advising on the creation of surveys that patients or their caregivers complete to help assess care quality. This stakeholder panel model is called the Technical Expert/Clinical User/Patient Panel (TECUPP). A TECUPP includes significant involvement of patients and caregivers in developing patient-reported measures, including multiple people who have or care for someone who has the disease or condition of interest. TECUPPs ideally have an equal number of patients/caregivers to the other members of the TECUPP, who include individuals with clinical or other relevant expertise in research, measurement, or other technical expertise. The TECUPP model helps create space for patients/caregivers to be heard and contribute diverse perspectives. The TECUPP model also helps clinicians and patients/caregivers develop a shared understanding of health care experiences and the types of survey questions that can be answered by patients/caregivers to inform the quality of health care received. This model includes challenges, like time management and managing off-topic conversations. When using a TECUPP, projects should consider the diversity of participants, have frequent but short meetings, and make space for everyone to participate in discussions, ensure written materials are lay-friendly, begin meetings with a patient story, and encourage use of email/chat in addition to spoken communication. [ABSTRACT FROM AUTHOR]
- Published
- 2025
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