Engagement Award Special Area of Interest: Intellectual and Developmental Disabilities

The 2019 law reauthorizing PCORI’s funding included two research priority areas, one of which centers on individuals with intellectual and developmental disabilities (IDD). This Special Area of Interest provides more focused support for engaging diverse stakeholders and facilitating patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) related to intellectual and developmental disabilities, which are critical for understanding and addressing the needs of those impacted by issues related to this topic.

As such, PCORI is continuing to actively explore additional opportunities for stakeholders to identify topics of interest and key research gaps and translate research results to improve patient care and health outcomes for individuals with IDD.

PCORI views developmental disabilities as chronic disabilities that originate at birth or in the developmental period and cause impairment in physical, learning, language and/or behavioral areas. Intellectual disabilities, which fall under the umbrella term of developmental disabilities, involve limitations to cognitive function (reasoning, learning, problem solving) and adaptive behavior. Not all developmental disabilities include limitations in cognitive ability.

Both the Engagement Award: Capacity Building and Engagement Award: Stakeholder Convening Support funding announcements provide such an opportunity to express our special interest in receiving applications that facilitate PCOR/CER related to issues that focus on improving patient care and health outcomes for those individuals with IDD. More information on each opportunity is provided below.

Please note: Special Areas of Interest, such as IDD, exist to encourage submissions on a topic, not to limit submissions to that topic only. PCORI continues to welcome and accept Engagement Award Letters of Intent on all topics related to PCOR/CER that fall within the guidelines of the program.

Engagement Award: Capacity Building

In addition to helping organizations and community groups build capacity and skills for PCOR/CER, this Engagement Award funding mechanism may be a useful vehicle for those seeking to engage and understand the most salient needs and issues of target stakeholder communities related to improving patient care and health outcomes for those individuals with IDD. Please note that the Engagement Award program does not fund the conduct of research; funds must be used for research support activities as outlined in the funding announcement.

This is an opportunity to address the need to build capacity for stakeholder engagement in PCOR/CER in IDD in areas that would benefit from further research. Please see below for a non-exhaustive list of topics raised by stakeholders to date which are of interest to PCORI.

Building capacity for stakeholders to engage in PCOR/CER related to:

• Addressing health equity and advancing IDD health outcomes for underserved populations, such as addressing institutional ableism and racism, building workforce capacity to provide appropriate and culturally competent care, matching high-risk individuals to specialty care and services, and addressing social determinants of health and/or risk factors and conditions that disproportionally affect individuals with IDD.
• Leveraging community-based and patient-centered models of care delivery.
• Challenges related to clinical care delivery, coordination and access, such as identifying and addressing risk factors for adverse health outcomes, treating secondary health conditions, timing of key provider encounters and transitions in care.
• Telehealth solutions.
• Transition to adulthood.
• Caregiver needs and access to wraparound support.
• Patient needs and preferences.
• Care for individuals with IDD who have high support needs.
• Mental health.

PCORI also welcomes other ideas which build capacity for stakeholder engagement in PCOR/CER around relevant topics related to IDD health outcomes, with appropriate justification.

Engagement Award: Stakeholder Convening Support

As with other topics, convenings related to the IDD special area of interest should be designed with the active involvement of patient and community groups and organizations to bring diverse stakeholders together to explore issues related to PCOR/CER or communicate PCORI-funded research results to targeted end-user audiences. As such, PCORI recognizes that a variety of stakeholders should play a vital role in promoting national, state and local improvements in patient care and health outcomes for those individuals with IDD.

Please see below for a non-exhaustive list of topics raised by stakeholders to date which are of interest to PCORI.

Supporting and facilitating collaboration around PCOR/CER related to:

• Addressing health equity and advancing IDD health outcomes for underserved populations, such as addressing institutional ableism and racism, building workforce capacity to provide appropriate and culturally competent care, matching high-risk individuals to specialty care and services, and addressing social determinants of health and/or risk factors and conditions that disproportionally affect individuals with IDD.
• Leveraging community-based and patient-centered models of care delivery.
• Challenges related to clinical care delivery, coordination and access, such as identifying and addressing risk factors for adverse health outcomes, treating secondary health conditions, timing of key provider encounters and transitions in care.
• Telehealth solutions.
• Transition to adulthood.
• Caregiver needs and access to wraparound support.
• Patient needs and preferences.
• Care for individuals with IDD who have high support needs.
• Mental health.

PCORI also welcomes other ideas which support and facilitate collaboration around PCOR/CER related to IDD health outcomes, with appropriate justification.

Posted: August 2021; Updated: July 2023