Project Summary

Background: PCOR research requires several ingredients for success: learning what outcomes are important from patients, aligning those outcomes to those that clinicians can address and are within scope of practice, and understanding which outcomes payers/regulators can support. Among individuals with intellectual and developmental disabilities (IDD), limited alignment and engagement has occurred for these groups prior to PCOR, which impacts sustainability.

Proposed Solution to the Problem: The project team proposes to build capacity for stakeholders to agree on desired outcomes to support PCOR and deliverables relevant to PCOR conducted in the US health system.

Objectives: “Individuals with IDD Engaged, Aligned, & Leading (IIDDEAL)” aims to: 
• Build knowledge and abilities of individuals with IDD and their families, clinicians, and payers/regulators to understand each other’s perspectives on priority outcomes that matter
• Establish recommendations for a Health Outcomes Framework aligned with stakeholder consensus for future PCOR
• Continue to build trust, enhance communication, and ensure co-learning among stakeholders to assure capacity to support future PCOR

Activities: The team will use the Research Engagement and Advocacy for Diverse Individuals (READI) Toolkit to orient community members to the process of PCOR and CER. The team will further build capacity through iterative consensus-building meetings. The team relies on an Image Graphic Facilitator to convey important concepts across stakeholder groups. The team will: establish group norms; expand visibility and outreach; hold stakeholder-specific consensus-building meetings; involve an expanded stakeholder network for revision; and hold a multi-stakeholder meeting to finalize recommendations for the Health Outcomes Framework, and disseminate.

Projected Outcomes and Outputs: Short-term deliverables at the conclusion of this award include: a website, expanded “Engagement and Compensation Guide” for different stakeholder groups, and a Health Outcomes Framework Recommendations document. Medium-term outputs after the project period include identification of outcome measures mapped onto the framework recommendations; researcher use of the recommendations to inform PCOR. Long-term outcomes after the project period include guidance for valid, reliable, and sensitive patient-centered outcome measures for sustained evaluation of priority outcomes for persons with IDD.

Patient and Stakeholder Engagement Plan: The team involves four stakeholder groups: persons with IDD, caregivers of persons with IDD, clinicians, and payers/regulators. Researchers engaged in PCOR/CER for persons with IDD will participate to ensure deliverables are useful for PCOR. The team includes two co-leads, one stakeholder engagement lead, and five key personnel representing different stakeholder perspectives. The team has a paid 15-member advisory council of representatives from each stakeholder group to inform project activities and review all products before use or dissemination. Accommodations and universally designed meeting structures will be used to support stakeholders.

Project Collaborators: The lead institution is Augusta University. The co-lead, key personnel, and advisory council members have relationships with other organizations, including but not limited to: Institute for Exceptional Care, The Arc, Anthem, UnitedHealthcare, several university systems, American College of Physicians, the National Association of State Directors of Developmental Disability Services, the American Academy of Developmental Medicine and Dentistry, the Council on Quality and Leadership, National Committee for Quality Assurance, and the Council of Medical Specialty Societies.

Project Information

Teal Benevides, MS, PhD
Hoangmai Pham, MD, MPH
Augusta University Research Institute, Inc.

Key Dates

24 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 20, 2023