Add local clinicians to site study staff to promote familiarity and community partnership.
Enhancing Study Site Capacity
Goal: Create the capacity of study sites and research organizations to increase enrollment for an ever-growing portfolio of Alzheimer’s disease and related dementias studies.
Ideas in this area might address:
- Infrastructure investments needed to enhance capacity of sites to accommodate growing number of studies and participants
- Systems to improve recruitment efficiency
- Collaboration – with communities, other institutions and study sites, organizations and agencies
- Workforce diversity, training, and capacity
- Changes in culture or valuation of clinical research in organizations
- Effective use of registries
- Role of funders, organizations, policymakers in implementing
Implement a plan to support institutional and community-wide coordination among research groups and clinical/social services, including ensuring that study sites are fully accessible to local communities.
Create clear institutional or site-level guidelines and training focused on the differentiation of recruitment from coercion, and include Community Advisory Board (CAB) members and other community partners in the development of this program.
Identify and address the scientific, ethical, regulatory, and compliance challenges to implementing incentives and recruitment strategies for a given audience. A menu of agreed upon compensation and incentive opportunities could be developed as more is learned about these approaches.
Create practice-based research networks with clinicians and relevant specialists and provide value or incentives, such as compensation, professional recognition as a contributor to research, and exposure to the research community, to clinicians to ensure the networks are sustained.
Partner with healthcare systems or insurers for research referral.
Manage and coordinate relationships with research volunteers, study partners, and clinical providers by embedding client relationship management software (CRM) at local research centers.
Work with primary care practices to understand how best to provide guidance and support for research recruitment as an integrated activity within the office practice environment, without disrupting the flow of clinical care. Leverage existing point-of-care decision-support tools to identify potential research subjects and obtain permission from physicians to enroll their patients in research studies.
Link community-based supportive care agencies and organizations to research referral opportunities (to support patients, caregivers, and primary care practitioners), such as including clinical trials discussions and referrals in reimbursement for care consultation.
Create direct linkages among the research community, primary care practices, and targeted subspecialty care practices to share specific research opportunity updates.
Develop and support geographically diverse and local healthcare advisory boards that include representatives from both primary care and specialty care practices (physicians, nurse practitioners, nurses, and office staff), along with patients and care partners, with the aim of monitoring recruitment efforts of each research center.
Foster an environment that incentivizes and prioritizes recruitment, enrollment, and retention in high-quality clinical trials and studies. Communicate to academic leaders that clinical trials work is scientific work and should be rewarded, supported, and recognized accordingly.
Develop site and system business processes that support a robust, efficient clinical research infrastructure. These processes may include use of stable funding models not linked to per-subject recruitment revenue for leadership, outreach and recruitment, as well as practices that support streamlined clinical trials.
Invest in facilities to accommodate greater enrollment (e.g., ensure adequate space; equipment; and services such as pharmacy, lab, radiology, information technology support).
Fiscally reward high-enrolling sites (e.g., cover start-up costs, set enrollment targets from the outset, and offer financial gain for reaching targets).