In preliminary engagement with patients and stakeholders, we have heard the importance of addressing morbidity and mortality across a range of conditions from preconception through postpartum. We have heard evidence needs for both long-term comparative effectiveness research (CER) and short-term evidence synthesis amid a global pandemic to help address these disparities.
We continue to listen to stakeholders about the unique challenges and sensitivities around engaging communities of color and those most burdened by poor maternal health outcomes in health research. We are also listening to often-overlooked communities with risk factors relevant to childbearing, such as veterans and sexual and gender minorities.
Improving Care for Individuals with Intellectual and/or Developmental Disabilities
According to the Centers for Disease Control and Prevention, one in six American children has one or more developmental disabilities. Developmental disabilities are chronic and begin either at birth or during the developmental period, and they cause physical, learning, language, and/or behavioral impairments. Intellectual disabilities, a type of developmental disability, involve limitations to cognitive function—such as learning, reasoning, and problem solving—and adaptive behavior. Not all developmental disabilities include limitations in cognitive ability.
People with IDD often have special healthcare needs. This issue is particularly critical for adolescents with IDD as they transition from pediatric to adult-oriented healthcare settings with fewer support systems, including care planning and coordination.
|In legislation reauthorizing PCORI's funding for another decade, Congress provided two areas of interest to pursue: intellectual and developmental disabilities and maternal mortality. Learn more. https://pcori.me/3bBp5fc||CLICK TO TWEET|
Compared to other patients with special healthcare needs, individuals with IDD are less likely to report adequate support of their transition, and to direct their own care or receive the supports needed to do so, and more likely to incompletely transition to adult care. Individuals with incomplete transitions are less likely to receive routine care, tests, and vaccinations, and are more likely to have unmet physical and mental health and prescription needs. Simply put, incomplete or faulty transitions in care can lead to a lifetime of health disparities.
Although evidence-based interventions to support transitional care are in use for other populations and conditions, research is needed to determine which care models and services are optimal and could be readily implemented for individuals with IDD.
Unsurprisingly, as with so many health conditions, people of color with IDD are subject to even greater health disparities compared to their peers from other groups. As part of PCORI’s interest in addressing healthcare disparities, we welcome studies of interventions that target vulnerable populations.
The annual meeting included these two related sessions. Log in with your existing registration email address or register for free to watch.
- Exploring Comparative Effectiveness Research Needs in Intellectual and Developmental Disabilities: A Conversation
- Increasing Access to Perinatal Mental Health Care: Multiple Approaches to Improve Outcomes
Ways to Get Involved
The Cycle 3 2020 Broad PCORI Funding Announcement (PFA), which opened for Letters of Intent September 1, offers up to $30 million in funding for CER in each of these priority topics. I should note that we are emphasizing these priority areas to encourage submissions to them, not to limit submissions to these topics only.
Under this Broad PFA, we seek to fund studies for maternal morbidity and mortality that compare the effectiveness of multilevel, culturally adapted interventions to address barriers in access to and continuity of optimal patient-centered maternal care. To address healthcare needs of people with IDD, we seek proposals for CER of models of care to support the healthcare transition from childhood to adulthood, and the continuation of patient-centered primary and specialty health care for individuals with IDD. That is just part of the evidence gap PCORI hopes to fill as we will continue to solicit and fund additional research in these topic areas in the coming years.
These special areas of interest are embedded within a variety of other funding announcements, as well. The funding announcement for Phased Large Awards for Comparative Effectiveness Research, our new initiative to fund bold, large-scale, phased CER projects that is currently accepting Letters of Intent invites proposals for research on maternal morbidity and mortality and IDD, and the Eugene Washington PCORI Engagement Awards opportunities for capacity building and stakeholder convening support invites applications on these topics as well.
At our upcoming Virtual Annual Meeting September 16 and 17, two breakout sessions—Exploring CER Needs in Intellectual and Developmental Disabilities: A Conversation, and Increasing Access to Perinatal Mental Health Care: Multiple Approaches to Improve Outcomes—offer opportunities for engagement and collaboration on what we can do together to improve health outcomes in these two areas. The Annual Meeting is free and open to anyone, and I hope many of you can join us.
Finally, directing more resources to maternal morbidity and mortality and IDD research will be top of mind as we begin our forward-looking re-examination of our National Research Priorities this fall.
I must emphasize that these initiatives are only the beginning of our work to answer important questions in each of these priority areas—a task we look forward to exploring with stakeholders and the broader research community in the coming years. I look forward to working with you along the way.