Marsolais Elizabeth, Anhang Price Rebecca, Berdahl Carl T, Shenk Anton, Schulson Lucy, O'Hanlon Claire E
RAND, Santa Monica, CA, USA.
RAND, Arlington, VA, USA.
Res Involv Engagem. 2025 Jan 7;11(1):2. doi: 10.1186/s40900-024-00661-4.
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.
患者及照护者的观点越来越多地被纳入医疗保健研究和政策制定中，但在质量指标制定过程中纳入这些观点的方式往往不够完善。我们描述了一种利益相关者小组模型，即技术专家/临床用户/患者小组（TECUPP）模型，用于在患者报告指标的制定过程中纳入患者/照护者的意见。该模型的特点是，患有该疾病或病症的患者或照护者在其中的代表性显著或与临床医生及其他具有专业技术知识的人员相当，而后者通常构成技术专家小组。我们报告了TECUPP模型的关键设计特征，以及我们如何使用该模型来制定基于调查的癌症诊断及时性患者体验指标。基于我们召集TECUPP以指导制定癌症诊断及时性患者报告指标的经验，我们描述了使用TECUPP模型的益处和挑战，以及指导其他可能将其用于制定以患者为中心的质量指标的考虑因素。益处包括为患者/照护者的重大贡献创造空间，促进临床医生与患者/照护者之间对患者体验形成共同理解，并使指标领域具有可观察性。挑战包括时间管理以及处理项目范围之外的对话。实施该模型的指标制定工作应考虑招募多样化的人员，安排简短且频繁的会议，确保所有TECUPP成员都能参与，准备易于理解的预读材料，以患者故事为会议切入点，并鼓励采用多种沟通方式。TECUPP模型促进了患者/照护者与临床医生/指标专家之间的讨论和理解，有助于制定基于调查的患者报告指标。
