Formulating Our Approach to New Priority Research Areas

As part of last winter’s legislation that reauthorized PCORI’s funding for 10 years, Congress included two new research priority areas for PCORI to address: strategies for improving maternal mortality, and improving health for individuals with intellectual and developmental disabilities (IDD).

These areas are of critical importance for PCORI given the long-standing health challenges faced by those affected and the opportunities that PCORI’s approach to research done differently can contribute to meaningful health improvements. We are committed to a multipronged approach to funding research to address a variety of issues related to these two topics over the next decade.

Addressing Maternal Morbidity and Mortality

The United States consistently ranks near the bottom among high-income countries on measures of maternal morbidity and mortality. Sadly, about 700 women die each year in the United States as a result of pregnancy or delivery complications. Additionally, severe maternal morbidity—unexpected outcomes of labor and delivery that result in significant short- or long-term consequences to a woman’s health—has been steadily increasing in recent years.

The burden of morbidity and mortality is highest for Black women, and the disparities for them continue to widen over time and are being exacerbated by a global pandemic. Non-Hispanic Black women are three to four times more likely than white women to die from pregnancy-related causes, and the preterm birth rate among Black women is nearly 50 percent higher than the rate among other women. In addition to Black women, disparities in maternal morbidity and mortality persist among American Indians and Asian Americans. Other factors, including socioeconomic status, age, and living in a rural setting also impact maternal morbidity and mortality.

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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 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.

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.

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.