June 22nd, 2023

Bridging Gaps in Pain and Medical Research Among Marginalized Communities: Reflections on the Past and Future Directions for Better Recruitment and Engagement

Event: 3:00-4:00pm ET

Join us for the USASP Juneteenth Seminar to learn and discuss the complex history of clinical research in marginalized communities, including past lessons and future opportunities. This webinar will also foster an open discussion on proactive strategies for greater inclusivity in pain research, particularly pertaining to recruitment, engagement and retention of marginalized individuals in clinical studies.

Speakers:

Anna Hood, PhD is a lecturer in the Division of Psychology and Mental Health and is a member of the Manchester Centre for Health Psychology. She is trained as a clinical psychologist and is licensed in the US and HCPC registered in the UK. She was previously a postdoctoral fellow at UCL, Great Ormond Street Institute of Child Health. Her graduate and clinical training were completed in the US at Washington University in St. Louis, Children’s Minnesota, and Cincinnati Children’s Hospital Medical Center. She has been the recipient of pre-doctoral and postdoctoral fellowships from the National Institutes of Health to fund research focused on the cognitive and psychological challenges faced by children and young adults with sickle cell disease. Specifically, her research aims to 1) promote self-management, patient engagement, and medication adherence, 2) identify interventions and the underlying neural mechanisms to improve cognitive impairments in patients with sickle cell disease, and 3) include an anti-racism framework in research, psychological treatments, and the clinical care of patients experiencing pain.

Jonathan Jackson, PhD, is the Executive Director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School. CARE investigates the impact of diversity and inclusion on the quality of human subjects research and leverages deep community entrenchment to build trust and overcome barriers to clinical trial participation. His research focuses on midlife and late-life health disparities in clinical settings that affect underserved populations. Dr. Jackson also works as a cognitive neuroscientist, investigating the early detection of Alzheimer’s disease, particularly in the absence of overt memory problems. He has become a well-known representative to underserved communities and dozens of affiliated organizations, particularly regarding participation in clinical research. Dr. Jackson serves on the leadership team of several organizations focused on community health, and has written guidance for local, statewide, and national groups on research access, engagement, and recruitment. 

https://www.massgeneral.org/research/division-clinical-research/centers-units-and-faculty/care/jonathan-jackson

Cassandra Trimnell is a prominent advocate for individuals living with sickle cell disease,
renowned for her role as the founder and executive director of Sickle Cell 101 (SC101). As the
first child diagnosed with sickle cell disease through the Iowa Newborn Screening Program in
1987, Trimnell has dedicated her life to bridging knowledge gaps and addressing the needs of
the global sickle cell community. Under her leadership, SC101 has flourished, offering
unparalleled digital platforms that generate real-time community insights and patient experience
data. With over 50,000 followers from 115 countries, SC101's social media presence has
become a trusted resource, reaching millions annually. Recognized for her expertise, Trimnell
has received accolades, including the prestigious "Community Champion" award from the Sickle
Cell Disease Association of America. A sought-after speaker and consultant, she contributes
her patient advocacy to influential boards and committees, such as the NIH-NHLBI's Sickle Cell
Disease Advisory Committee and the American Society of Hematology's Sickle Cell Disease
Coalition. Trimnell's significant contributions encompass collaborations on impactful projects,
including the New England Journal of Medicine's "Sickle Cell and Gene Therapy Patient and
Physician Perspectives" video series and the NHLBI's Cure Sickle Cell Initiative. Her tireless
dedication and unwavering commitment have solidified her as a respected leader and advocate
for all stakeholders affected by sickle cell disease, inspiring innovation in education, research,
and awareness to improve the lives of countless individuals and families impacted by sickle cell.

Moderator

Troy Dildine, PhD, is a T-32 Postdoctoral Scholar at Stanford University School of Medicine within the Pain Medicine division. Dr. Dildine obtained their PhD, focused on health disparities in pain, through the NIH Graduate Partnership Program between the National Center for Complementary and Integrative Health and the Clinical Neuroscience Section at Karolinska Institute. Dr. Dildine’s research aims at tackling health disparities by 1) better understanding social and perceptual biases in medical providers and 2) identifying risk factors (e.g., discrimination and medical mistrust) and targets for intervention for more severe and frequent pain observed in marginalized patient populations. Dr. Dildine sits on several committees related to health equity and DEIA-related initiatives, including their current role as Social Media and Outreach Chair for the USASP Diversity, Inclusion, and Antiracism SIG.