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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
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- 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
Mental health is a topic that some people feel uncomfortable discussing. But failing to spread mental health awareness can have serious consequences. For example, people with serious mental illness (SMI)—conditions including schizophrenia, bipolar disorder, and major depressive disorder—are at higher risk for certain health conditions and have shorter life expectancies than the general population.
These dire consequences drive home the importance of spreading evidence-based mental health research results for implementation. Several Eugene Washington PCORI Engagement Awards projects are working to reduce mental health disparities and improve outcomes.
Educating Adults to Support Youth
Michael Burbrink, MED, has worked in different school environments with kids from varying backgrounds over the course of 10 years as an elementary school counselor. Despite this, he found himself confronted with a lack of knowledge and experience when a student first talked to him about the mental health challenges they were facing as a transgender youth.
Burbrink tried to be empathetic, warm, and a good listener, but he didn’t know how best to help. When he went looking for information and resources, he found relatively little. This desire to learn more, and help others do so as well, is what led him to the Management of Mental Health Problems among Gender Non-Conforming Youth Engagement Award led by Michael Goodman, MD, MPH, at the Rollins School of Public Health at Emory University.
After conducting a PCORI-funded study on transgender health in 2013, Goodman learned that transgender and gender non-conforming (TGNC) youth were significantly more likely than their peers to struggle with depression and anxiety, suicidal ideation, and self-inflicted injury. Feeling compelled to spread these findings to those who could best intervene, he set about creating educational content for school counselors, parents of TGNC youth, and pediatricians.
Each of these groups developed a one-page educational sheet based on their knowledge—and lack thereof—on the issues. Burbrink and other school counselors developed the sheet for their peers, which contained insight on basic terminology, statistics on the challenges faced by TGNC youth, the impact on the child’s education, and guidance on what a school counselor could do to help. With help from wide-reaching partner organizations, the finished materials were spread across the country.
To Goodman, the most important thing was for people to simply be aware and on the lookout for possible danger even without obvious signs. Burbrink echoed that sentiment.
“I think it’s key that these students feel connected and supported, as they’re already likely struggling with strong feelings of isolation and inner turmoil,” he said.
I think it’s key that these students feel connected and supported, as they’re already likely struggling with strong feelings of isolation and inner turmoil.Michael Burbrink, MED Guidance counselor
Keeping Care Close to Home
Eva Powell, MSW, has spent her career as a hospital social worker and consumer advocate. Through these passions, she obtained a unique understanding of engaging others in the healthcare setting to address the social causes of health such as a patient’s housing, job, or neighborhood. When she started at the Alliance of Community Health Plans (ACHP), she and her team noticed a need by their members—nonprofit, community-based, provider-aligned health plans—for evidence-based mental health solutions they could feasibly implement.
Ensuring access to high-quality mental health care is a challenge for many health plans because of limited network providers and financial resources. To tackle this challenge, Powell and her team hosted webinars and a conference disseminating the findings of a previous PCORI-funded study via their new Engagement Award, Peer-Led Interventions to Expand Access to Care for Health Plan Members with SMI.
I’ve also seen, in front of my eyes, people who have significant mental illness get better—more functional—as a result of having a meaningful role in our coalition.Kelly Irwin, MD, MPH Project Lead, PCORI Engagement Award
The mortality inequity for people with SMI is due in large part because they receive less preventative care and chronic condition management than others. For many people with SMI, difficulty building trust with traditional providers or simply getting to their offices can be a barrier to accessing care. “Most people would rather remain in their communities, or at least not have to travel a long distance for care,” Powell explained.
As such, Powell sought to extend the care team into the community by partnering with peer navigators—people with SMI, family members, caregivers, and others with lived experience—to build trust with patients and help them manage all their health needs, including navigating the complex healthcare system. “There seems to be acceptance on a number of levels that while the clinical setting is necessary for certain things, some things are better done closer to home,” Powell said.
Projects Featured in this Blog Post
Management of Mental Health Problems Among Gender Non-Conforming Youth
Michael Goodman, MD, MPH
Peer-Led Interventions to Expand Access to Care for Health Plan Members with Serious Mental Illness
Eva Powell, MSW
Alliance of Community Health Plans Foundation
Engaging Stakeholders to Promote Equity in Cancer Care for People with Serious Mental Illness
Kelly Irwin, MD, MPH
Massachusetts General Hospital
Equity through Engagement
Kelly Irwin, MD, MPH, a psychiatrist at the Massachusetts General Hospital Cancer Center, saw an urgent need unaddressed by the healthcare system. Social isolation, stigma, poverty, and systemically fragmented care all were contributing to significant cancer mortality rates among people with SMI.
Sometimes, disjointed communication between a patient’s oncologist and mental health specialist resulted in care that did not fully account for a patient’s medical and social needs, with overwhelming consequences for patients and providers alike.
“A cancer diagnosis is overwhelming for anyone, but if you’re also someone who has had bad experiences under the healthcare system, or has difficulty processing complex information, or doesn’t have an advocate, you can imagine that you might initially just feel overwhelmed and decline [care],” Irwin explained.
To develop and disseminate interventions, Irwin and her team built a coalition of patients, caregivers, oncologists, community mental health leaders, researchers, and policy makers through an Engagement Award—Engaging Stakeholders to Promote Equity in Cancer Care for People with Serious Mental Illness—committed to ensuring mental illness is not a barrier to receiving care that all people deserve. The resulting Cancer and Mental Health Collaborative fostered clinician consultation with patients and other clinicians and guided members on patient-centered research and appropriate care.
The project’s community stakeholder board comprised patient or caregiver co-led workgroups to engage members of diverse organizations. One such workgroup led arts initiatives, such as gathering patient selfies, to generate awareness and conversation. Another art installment was showcased at their Bridging the Divide symposium. This was one of many ways the project provided connectedness, purpose, and social support for patients. “It’s amazing the difference that can make,” Irwin said, “I’ve also seen, in front of my eyes, people who have significant mental illness get better—more functional—as a result of having a meaningful role in our coalition.”
Moving Forward Together
Bringing people together—whether it’s to work to find solutions, spread existing findings, or simply have a conversation—can have enormous mental health benefits. To learn more about any of these Engagement Awards, visit the links above. The more people that join and share these, or other mental health efforts, the greater the collective understanding of mental health will be. Ultimately, society will be stronger, more equitable, and healthier for it.
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