Project Summary

Background: Quality measures need to capture aspects of care meaningful to patients. However, patient community (patient, advocate, family caregiver) input into development and evaluation of quality measures and performance programs has been negligible. The patient community recognizes it needs to hone its capabilities to increase its currently limited capacity to partner on quality-related patient-centered outcomes and comparative-effectiveness research.
Proposed Solution to the Problem: The National Health Council (NHC) will engage its partners, the patient community, and other stakeholders to create a non-disease-specific curriculum for the patient community on health care quality. The program will be geared toward training the staffs of patient advocacy groups in a train-the-trainer approach.


  • Form a Quality Patient Advisory Committee (QPAC) of patients and other stakeholders to inform and guide this project
  • Conduct patient and advocacy group staff interviews and surveys to understand quality-of-care knowledge and training needs, and preferred training delivery methods
  • Build a patient-specific, quality training curriculum using existing PCORI, National Quality Forum, University of Maryland Baltimore PATIENTS Program, Northeast-Caribbean AIDS Education and Training Centers, and other resources, creating new ones as needed
  • Implement train-the-trainer quality training programs in 2016-2017
  • Evaluate the quality training program to gauge impact and improve future programs.

Activities: Regular project team and QPAC meetings will be held to keep the project on track and targeted to learner needs. Interviews and surveys of patient advocacy group needs and preferences will be conducted. A search for and assembly of existing training materials will be conducted. The curriculum will be developed and the training delivered with learner evaluations. The training curriculum, materials, and evaluations will be reported and disseminated.
Outcomes and Outputs (projected): The patient community will have increased capacity to respond to the growing and varied number of requests to engage on quality. In 2016-2017, we expect to train over 200 members of the patient community by training NHC members and helping them to train their members. Increased patient involvement in quality research and programs will make an important contribution to improved health care quality.
Patient and Stakeholder Engagement Plan: The need for more patient expertise on quality was recognized by the NHC membership. Thus, the NHC held two sessions with NQF and National Committee for Quality Assurance (NCQA) speakers in 2015, resulting in members requesting more in-depth training. During NHC standing committee meetings, we held preliminary discussions on patient groups’ quality training needs and preferences. Members told us they want two kinds of training: 1) a train-the-trainer program for patient advocacy groups, so that advocacy group staff can attend and then use their new knowledge, skills, and abilities to train their own members; and 2) training for individual patient/patient advocates, which would serve as the basis for the training the organizations would bring to their patient constituents—with both intricately tied together. The patient voice will be kept at the forefront through the QPAC, which will be a constant throughout the project.

Project Collaborators: National Quality Forum; University of Maryland, Baltimore PATIENTS Program; Northeast-Caribbean AIDS Education and Training Centers

Project Information

Eleanor Perfetto, PhD, MS
National Health Council

Key Dates

March 2018


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 8, 2024