Goal #2: Promote partnerships and collaborations

Date: June 4th, 2025Time: 12:00 - 1:00 p.m. ETLocation: Zoom&nbsp;Hot off the press! Our first Learning Health Systems-CTSA Partnerships Community of Practice session will address engaging key stakeholders. All are welcome, including health system leaders, patients, clinicians, CTSA faculty and staff, researchers, and other stakeholders. Attendees do not need to be part of our working group.&nbsp;All are invited! &nbsp;&nbsp; Register for the event <a href="https://zoom.us/meeting/register/d2X0FiCzSAKpHesqaRabew" target="_blank" rel="noopener noreferrer">here</a>.&nbsp; Questions? Email <a href="mailto:LHS-CTSA.Partnerships@ccos.ctsa.io" target="_blank" rel="noopener noreferrer">LHS-CTSA.Partnerships@ccos.ctsa.io</a> &nbsp;

National Institutes of Health (NIH)

New! Community of Practice to Facilitate Effective LHS-CTSA Partnerships 1st Wed. every other month, 12-1pm ET / 9-10am PT. June 4th topic: Engaging key stakeholders. Share knowledge and experiences. Learn best and promising practices. acquire strategies 

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National Center for Advancing Translational Sciences

Inaugural Community of Practice Session: Engaging Key Stakeholders

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CCOS is pleased to continue our series of hub highlights featuring the innovative clinical and translational science coming out of the CTSA Program. Today, we’re dissecting the details behind a strategy that the North Carolina Translational and Clinical Sciences (NC TraCS) Institute at the University of North Carolina at Chapel Hill is using to expand patient engagement in research.&nbsp;&nbsp;Early engagement of patients and communities is crucial for research, as it ensures that studies are relevant, useful, and reflective of the needs and priorities of the communities they aim to benefit. Engagement entails the meaningful involvement of community members, patients, caregivers, clinicians, and other partners in the research process, from design to dissemination. This approach helps to refine proposals, identify potential barriers to recruitment and retention, and ensure that research materials are suited to the community they serve. However, early engagement is often challenging, due in part to the lack of dedicated funding to support these activities, making it difficult for researchers to involve community partners effectively.&nbsp;&nbsp;<a href="https://tracs.unc.edu/" target="_blank" rel="noopener noreferrer">The North Carolina Translational and Clinical Sciences (NC TraCS) Institute</a> is addressing this challenge with the <a href="https://tracs.unc.edu/index.php/services/engagement" target="_blank" rel="noopener noreferrer">Patient and Community Engagement in Research (PaCER) program</a>. The PaCER program is designed to facilitate engagement between academic, clinical, patient, and community partners across North Carolina. The program offers a variety of services, including consultations, community feedback sessions, meeting facilitation, coaching, and training to support all phases of health research projects. By providing these resources, PaCER ensures that community input informs research that addresses the priorities and needs of the communities they serve.&nbsp;&nbsp;One of PaCER’s standout initiatives is the <a href="https://tracs.unc.edu/index.php/news-articles/2279-tracs-accepting-applications-for-engagement-voucher-program" target="_blank" rel="noopener noreferrer">Engagement Voucher Program</a>, launched in 2024. This program offers up to $5,000 per award to support research engagement activities, such as partner compensation, meeting facilitation, and translation services. In its first round, five early-career investigators received funding totaling $26,136 for projects focused on engaging distinct populations such as older adults with advanced cancer, patients with arthritis, and autistic youth. This funding is crucial for engaging these populations in thoughtful, flexible ways that recognize their diverse needs and experiences and ensure their meaningful partnership with researchers.&nbsp;&nbsp;Beneficiaries of the Engagement Voucher Program often utilize a popular PaCER Program service – <a href="https://tracs.unc.edu/docs/engagement/TraCS_PaCER_Community_Feedback_Sessions.pdf" target="_blank" rel="noopener noreferrer">community feedback sessions</a> – to enhance their research. Trained PaCER staff facilitate sessions with patients and key community members to gather input on the design, implementation, and/or dissemination of scientific research. Community feedback sessions typically last 1.5 - 2 hours and aim to elicit authentic and constructive feedback from a small group of interest holders. Since starting in 2022, PaCER has conducted 40 community feedback sessions across 18 different research projects, with over 250 participants. Researchers who have provided feedback on this service unanimously state that they would recommend it to their colleagues, clearly indicating the myriad and valuable benefits of community feedback sessions.&nbsp;&nbsp;The success of the Engagement Voucher Program has been so significant that a second round of funding is planned for early 2025. This program has also inspired <a href="https://ccos-cc.ctsa.io/news/hub-spotlight-utah-ctsi" target="_blank" rel="noopener noreferrer">other CTSA hubs</a> to develop similar initiatives, demonstrating both its impact and effectiveness. By fostering early engagement, the program not only enhances the relevance and quality of research but also builds trust and collaboration between researchers and communities.&nbsp;&nbsp;&nbsp;

North Carolina Translational and Clinical Sciences Institute

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University of North Carolina at Chapel Hill

Hub Spotlight: North Carolina Translational and Clinical Sciences Institute - Pioneering Patient Engagement in Clinical Research

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Goal #1: Advance clinical and translational science

Parkinson’s disease is a progressive condition that affects the brain and worsens over time, causing movement symptoms such as rigidity and tremor. The disease also can cause cognitive deficits in memory and thinking. Deep Brain Stimulation (DBS) has proven to be an effective treatment to alleviate some motor symptoms of Parkinson’s disease. However, DBS can worsen the disease’s negative impact on executive function, working memory and verbal fluency.&nbsp;Researchers at the University of Southern California (USC) are studying a new way to deliver DBS that could sustain the treatment’s motor benefits as well as improve cognitive dysfunction. If study results show benefits from the experimental treatment protocol, it could help people with other cognitive-related diagnoses as well…&nbsp;&nbsp;Read the full article <a href="https://sc-ctsi.org/news/usc-study-aims-to-improve-deep-brain-stimulation-results-for-parkinsons-without-cognitive-side-effects" target="_blank" rel="noopener noreferrer">here</a>.

Southern California Clinical and Translational Science Institute

Illustration depicting a brain undergoing DBS surgery.

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University of Southern California

USC Study Aims to Improve Deep Brain Stimulation Results for Parkinson’s without Cognitive Side Effects

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Inaugural Community of Practice Session: Engaging Key Stakeholders