- The PCORI Strategic Plan
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Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Kristin Lee Berg, PhD, LCSW, was never a rebellious teenager, but she did have to navigate total vision loss in one eye and partial blindness in the other due to autoimmune complications of rheumatoid arthritis.
Fortunately, Berg felt supported growing up as the youngest child in a large family and says the “disability rights movement was transformational” for her during her teen years. She was also confident that the Americans with Disabilities Act (ADA) would protect her and her peers from discrimination as they became adults. After college, however, she learned that was not the case for many young people with intellectual and developmental disabilities (IDD).
Now, as an associate professor in the Department of Disability and Human Development at the University of Illinois-Chicago, Berg’s research focuses on strategies to help teens with IDD thrive as adults.
In her first job after college, Berg worked for a community-based program to help teens with IDD tackle the challenges of growing up. She brought her “passion and personal experience” to her work, but soon discovered that a lot of the young people in the program had been abused and neglected as children. Berg also learned that many of the teens did not have access to necessary behavioral health resources. These tough lessons shaped her current work to make mental health services more accessible to people with IDD. Berg feels strongly that successfully addressing mental health concerns is “fundamental to successfully transitioning to adulthood."
Poor Mental Health, Poor Physical Health
“Teens with disabilities are far more likely to experience behavioral health disparities and health outcome disparities than their peers,” Berg explains. She notes that when teens who are already medically vulnerable due to their IDD are denied mental health services, their overall health suffers. She adds that it’s difficult to pursue preventive and maintenance medical care “when you have unresolved trauma.” Unfortunately, Berg and her team have worked with many families that have been told by behavioral health providers that “we don’t treat kids with autism,” or other developmental disabilities. Berg says she “thought the ADA would be protective” against this kind of discrimination. She and her team have grown “tired of just documenting the problem” and are “working to do something about it” through their research on behavioral health care coordination.
Teens with disabilities are far more likely to experience behavioral health disparities and health outcome disparities than their peers.Kristin Lee Berg, PhD, LCSW Associate Professor, Department of Disability & Human Development, University of Illinois-Chicago
Improving Care Coordination
Berg explains that actively coordinating care, including behavioral health services, enhances health outcomes for everyone. Care coordination allows providers to connect patients with available resources more easily. For teens with IDD, care coordination may be particularly useful for facilitating early diagnosis of depression, anxiety, and other mental health disorders. Berg notes that early intervention is vital for preventing future behavioral health concerns.
Berg and her team's PCORI-funded study to examine how to improve behavioral health care coordination for teens with IDD is currently underway. With the help of a teen advisory panel, she and her team have developed a virtual behavioral health platform. The teen advisors have given helpful feedback for designing a platform that truly appeals to young people with IDD.
Berg is excited about their input and appreciates PCORI’s unique “focus on patients and the degree to which [PCORI] incorporates community stakeholders.” She adds from personal experience that “if you’re not being led by stakeholders, your work can easily become off track.”
Hear more from Berg during the Advancing Health Equity through Research on Transitions for People with Intellectual and Developmental Disabilities breakout session. View the full annual meeting agenda and register now!
About the 2022 PCORI Annual Meeting Blog Series
In the weeks leading up to the Annual Meeting on October 26 and 27, we are featuring a different breakout session panelist, their patient-centered work, and their participation in sessions on COVID-19, health equity, intellectual and developmental disabilities, maternal health, social determinants of health, and telehealth.