Background: People with intellectual and/or developmental disabilities (IDD) and other key stakeholders often lack opportunities to engage in inclusive, patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER).
Proposed Solution to the Problem: This project will establish the Kansas Health And Research Participation (K-HARP) Network that will include people with IDD, family members, clinicians, policy makers, health and community support providers, disability and health researchers, and other healthcare stakeholders to build capacity for inclusive PCOR/CER in Kansas. With support from the Kansas University Center on Developmental Disabilities (KUCDD), the K-HARP network will develop and implement a learning series focused on building knowledge, competencies, and abilities related to inclusive research among people with IDD to enable them to take on roles as coresearchers and participate in all phases of PCOR/CER research.
Objectives: The primary objective is to develop, implement, evaluate, and disseminate a framework for building capacity for inclusive PCOR co-led by people with and without IDD. The project team has four aims: (1) establish the K-HARP network, (2) create and implement the K-HARP learning series, (3) create a strategic plan for future inclusive PCOR/CER research in Kansas, and (4) build capacity for ongoing network growth.
Activities: Activities align with the four aims and include recruiting participants for the K-HARP network and learning series, hosting monthly K-HARP meetings and the K-HARP learning series, conducting a World Café, developing a plain language report, creating a future research agenda that targets participation of people with IDD as researchers, and disseminating project materials.
Projected Outcomes and Outputs:
- Short-term outcomes during the project period include: creation and implementation of the K-HARP network and learning series, development of a guide for the learning series to enable implementation in other contexts, and a strategic plan for future PCOR/CER.
- Medium-term outcomes (0-2 years post-project period) include: ongoing meetings of the K-HARP network and strategic planning, increases in awareness of inclusive health research, and funding to support additional K-HARP learning series and PCOR/CER.
- Long-term outcomes (3+ years post-project period) include: new, funded PCORI projects; expansion of the K-HARP network and learning series; and engagement of people with IDD in a variety of research roles, including as key personnel.
Patient and Stakeholder Engagement Plan: People with IDD and other stakeholders are integrated into all components of this capacity building project, including as key personnel, evaluators, codevelopers of the K-HARP learning series, and members of the K-HARP network and learning series.
Project Collaborators: The project team will have multiple collaborators representing the diverse range of stakeholders in IDD health research and services, as well as the range of regions and racial and ethnic identities in Kansas. The project team has three named collaborators on the project: (1) the Self-Advocate Coalition of Kansas, the statewide advocacy group in Kansas led by adults with IDD that will support recruitment and project evaluation; (2) the Coalition for Truth in Independence, a grassroot, self-advocacy organization that has a specific focus on supporting marginalized groups that will support using the exchange boundary framework; and (3) the Kansas Department of Health and Environment (KDHE), a key policy partner, as KDHE oversees public health and Medicaid programs in Kansas and will support recruitment, dissemination, and sustainability.