Next up in our CTSA hub spotlight series is The Clinical and Translational Science Institute (CTSI) at NYU Langone Health. The NYU CTSI provides resources, research services, and training in one of the largest, most complex cities in the nation. In an article published in the Journal of Clinical and Translational Science, the Institute showcases a unique way to address the second goal in the new NCATS strategic plan: Empower everyone to contribute to and benefit from translational science.
Historically, study populations in clinical research have not always represented the full range of individuals that stand to benefit from scientific discoveries. This has led to new treatments that are inadequate for all patients and contributes to a lack of trust in the medical community. Overall, this negatively impacts the quality of the research, study participant retention, and the health of the community.
To address this divide between researchers and patients, the NYU CTSI created a Patient Advisory Council for Research (PACR) through its Recruitment and Retention Unit. The aim was to involve patients in providing feedback on clinical trials and health-related research studies. In collaboration with the clinical research informatics team, the NYU CTSI employed an electronic health record (EHR)-based strategy to recruit PACR members. This method involved randomly selecting NYU Langone Health patients based on the International Classification of Diseases codes and inviting them to participate through the patient portal. All interested patients were given a chance to speak with the Recruitment and Retention Unit program coordinator to ensure they understood the purpose and process of serving on the PACR.
The initiative led to a PACR membership that represented various sociodemographic factors and health conditions, such as HIV infection, fibromyalgia, heart disease, and more. The researchers hypothesize that contacting patients through patient portals may allow them to reach a wider participant pool than traditional methods like nominations or flyers. Members provide feedback on study design, patient education materials, and proper reimbursement, ensuring that research is patient centered.
This study highlights the advantages and limitations of using an EHR-based strategy for PACR recruitment. This approach may mitigate biases associated with traditional recruitment methods like nomination and referrals and enhance participation by various sociodemographic groups and health conditions.
Looking forward, the NYU CTSI team seeks to further increase the diversification of their PACR by finding a solution for patients who might be inadvertently excluded by an electronic health record-based approach.
