Background: Since 2017 and with support from the Patient-Centered Outcomes Research Institute (PCORI), the Alliance for Aging Research launched the Talk NERDY (Nurturing Engagement in Research and Development with You) to Me network to empower patients and family caregivers facing age-related macular degeneration (AMD), Alzheimer’s disease (AD), atrial fibrillation (AFib), chronic pain, and/or heart valve disease (HVD) to partner with researchers on patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER).
Over its four years, the Talk NERDY to Me network has begun to help address the underrepresentation of older adult patients and family caregivers in research advisory positions by placing network alum in PCOR efforts at FDA, DoD, PCORI, NIH, the private sector, and in local CER projects. Engaging seniors with major chronic illnesses has opened a window into how real and perceived barriers impact access to effective interventions and services. However, the alliance has noticed a lack of PCOR opportunities for the network’s alum. At the conclusion of each training, a majority of participants share that they feel extremely empowered by what they’ve learned and want to get involved in PCOR to use their expertise to make a difference; however, their enthusiasm becomes stalled because they struggle to find opportunities. The alliance has also noticed that the training’s teachers, researchers specializing in one of the network’s disease areas of interest, are not familiar with PCOR or do not have a true understanding of how to implement this type of research.
Proposed Solution to the Problem: Building on the success of the Talk NERDY to Me network from 2017-2020, the alliance proposes to expand the Talk NERDY to Me network with a continued focus on patients and family caregivers of patients with AMD, AD, AFib, chronic pain, and/or HVD to pursue PCOR engagement opportunities, with an additional focus to actively educate researchers and providers who commit to establishing meaningful PCOR engagement opportunities within their work. The alliance believes that the education of researchers and providers in PCOR will lead to more PCOR engagement opportunities for patients and family caregivers. The alliance will also encourage trained researchers and providers to enlist their academic centers and colleagues to engage in PCOR.
Objectives: The Talk NERDY to Me network’s goals are to: (a) increase the number of chronic disease patients, family caregivers, researchers, and providers who understand PCOR and how to develop research questions that are meaningful to older patients; (b) increase the number of older patients and family caregivers partnering with researchers and clinicians on PCOR/CER projects; (c) increase the number of researchers and clinicians willing to participate in and/or create PCOR/CER projects; and (d) increase trainees’ overall participation in PCOR through one-on-one follow-up and by providing information on opportunities to serve in advisory roles in a variety of public and private settings.
Activities: Project methods and activities will include: (a) offering two virtual trainings over the award period to educate participants on PCOR, CER, and how to find opportunities to become engaged in the research process; (b) expanding trainee participation to include researchers, and providers, in addition to older adult patients and family caregivers; (c) working with the Talk NERDY to Me Advisory Council and experts in select clinical areas to review the curriculum, and expand it to train on how to create PCOR within research projects; (d) developing a recruitment plan and working with leading patient advocacy organizations and national partners to actively recruit participants in all four regions of the country; and (e) providing additional educational opportunities and increased personalized action plans for trainees.
Projected Outcomes and Outputs: The alliance anticipates the projected outcomes of the Talk NERDY to Me network to include (a) holding two trainings and training ~80 patients, family caregivers, researchers, and providers (in total) to understand and participate in PCOR/CER over the award period; (b) expanding and tailoring the training curriculum for researchers and providers; and (c) year-round engagement of the Talk NERDY to Me network.
Patient and Stakeholder Engagement Plan: To identify and recruit older patients, family caregivers, researchers, and providers to participate in the Talk NERDY to Me training, the alliance will work with leading patient advocacy organizations and national partners—including the Alzheimer’s Association, ACPA/US Pain Foundation, StopAFib, Prevent Blindness, and industry representatives, specialty providers, and research organizations in the clinical areas—to identify and recruit participants. The alliance will measure engagement of Talk NERDY to Me stakeholders (participants, teachers, and Talk NERDY to Me Advisory Council members) by keeping detailed records of activities such as: attendance at virtual training sessions; survey responses; action plan submissions; and one-on-one post-training interviews.
Project Collaborators: The Alliance for Aging Research and the Talk NERDY to Me Advisory Council. The advisory council is comprised of older adult patients, family caregivers, clinicians, researchers, industry representatives, and payers.