Talk NERDY
Research shows that involving older adult patients in decision-making about their healthcare leads to better patient outcomes and satisfaction. Older adult patient and family caregiver engagement in research is more critical than ever to the Alliance’s overall mission.
The Talk NERDY (Nurturing Engagement in Research and Development with You) program empowers older adults, their family caregivers, clinicians, and health researchers to learn about clinical research and patient-centered outcomes research (PCOR) and how we can all work together to develop – and implement – research that answers the questions that matter most to patients. The program’s focus is on five health conditions of particular interest to older adults: 1) Alzheimer’s disease, 2) atrial fibrillation, 3) chronic pain and/or disability, 4) heart valve disease and 5) macular degeneration in adults 65 years and older.
The Alliance for Aging Research started the program as an in-person meeting, with support from the Patient-Centered Outcomes Research Institute (PCORI). In 2020, all training classes transitioned to online via Zoom and Google Classroom. Classes include one for new participants and on-going education for Talk NERDY graduates, “Talk NERDY Alumni.” Since 2017, the Talk NERDY program has trained 150 patients and family caregivers on the clinical trials process, how to develop research questions that are important to older patients and their family caregivers, and how to find patient engagement opportunities and encourage others to do the same.
Talk NERDY graduates go on to serve on clinical trial review committees, institutional review boards, FDA Advisory Committees, and other research, policy, and health education-focused opportunities.
Our program brings together three important communities/perspectives:
- Patients with lived experience of these health conditions;
- Caretakers with lived experience of caring for a loved one with these health conditions; and
- Clinicians and researchers interested in developing new patient-centered outcomes research or integrating patient engagement within existing research programs.
All of the participants bring expertise to the table. Clinicians and researchers help patients and caregivers better understand the research process, and patients and caretakers help researchers better understand what research questions matter most. Through the Talk NERDY program, all participants work together to learn how research can be better designed to meet patient and family caregiver needs.
If you are interested in learning more about Talk NERDY or participating in the program email [email protected].
NERDY Training
2023 NERDY Training
Talk NERDY completed its Fall Training: Clinical Trial Design Deep Dive into Pragmatic vs. Explanatory Trials. The training included 38 Talk NERDY alumni with lived expertise in Alzheimer’s disease, age-related macular degeneration, atrial fibrillation, chronic pain, and heart valve disease. The training was taught by Dr. Douglas Landsittel, Professor and Chair of Indiana University School of Public Health-Bloomington’s Department of Epidemiology and Biostatistics, and Alliance-related staff Beth Mathews-Bradshaw and Sara Collina. Learning goals included aspects of clinical trials that make them more or less pragmatic, learning the purpose and value of the PRECIS-2 (PRagmatic Explanatory Continuum Indicator Summary) tool and applying it to research, and learning about the challenges of implementing and evaluating pragmatic trials. For homework, participants reviewed one entertaining video on basic statistics, two videos about the Precis-2 tool, read three research articles, and watched an interview of Dr. Landsittel discussing pragmatic vs. explanatory trials. During the training, participants worked in breakout groups to map and score the three articles to the Precis-2 tool and brainstormed research questions conducive to pragmatic trials.
The Spring Training Session focused on additional education for Talk NERDY alumni with new courses. On May 16 and 18, 2023 Talk NERDY held its first Clinical Trials Take 2 course for two hours over two days on Safety and Randomization and Blinding. Topics included:
• The different types of clinical research;
• Phases of clinical trials;
• Blinding and randomization within clinical trials;
• Safety considerations, including: Data and Safety Monitoring Plans and Boards (What are they? How do they work?) and adverse events (AEs) and serious adverse events (SAEs) (What are they? How are they classified? How do they influence the outcome of a trial?);
• Background on Institutional Review Boards and how they work; and
• The informed consent process, to include: Assent/consent, cultural considerations, and special considerations for the aging population.
A Selection of Training Materials:
Clinical Research Overview
Interview with Dr. Cary Reid
2022 NERDY Training
The 2022 Talk NERDY training was held virtually over six 1.5-hour sessions in October 2022. 28 senior patients, family caregivers, clinicians, and researchers with a focus on Alzheimer’s disease, atrial fibrillation, chronic pain, and heart valve disease completed the training. Participants learned about patient-centered outcomes research, how to critically analyze research, and engaged directly with researchers focused on the aging-related health conditions listed above.
Sessions:
Session 1: What is Patient-Centered Outcomes Research (PCOR)?
Sessions 2 and 3: How do we analyze research from a patient perspective?
Session 4: What have we learned about implementing PCOR?
Session 5: What could patient/researcher collaboration look like?
Session 6: What does patient-centered aging research look like?
Training materials included:
Cochrane Evidence Essentials Sessions One and Two
National Health Council Patient Engagement Rubric
Alliance for Aging Research Interviews with Researchers
Heart Valve
Chronic Pain
ENACT Consortium
2021 NERDY Training
The 2021 Talk NERDY training was held virtually over six 1.5-hour sessions in December 2021. 36 senior patients, family caregivers, clinicians, and researchers with a focus on age-related macular degeneration (AMD), Alzheimer’s disease, atrial fibrillation, chronic pain, and heart valve disease completed the training. The training expanded their influence in aging-related health research and educated them on research advocacy.
Sessions:
• Session 1: What is patient-centered outcomes research?
• Session 2: How does medical research work?
• Session 3: How is medical research analyzed?
• Session 4: What do clinicians and researchers need to conduct PCOR?
• Session 5: How can patients and family caregivers get involved?
• Session 6: How can we continue to work together?
A Selection of Training Materials:
2020 NERDY Training
The 2020 Talk NERDY training was held virtually over six 1.5-hour sessions in October and November 2020. Fourteen members of the Talk NERDY Advisory Council attended and aided in the training of 41 senior patients and family caregivers with a focus on age-related macular degeneration, Alzheimer’s disease, atrial fibrillation, chronic pain, and heart valve disease. The training expanded their influence in aging-related health research and educated them on research advocacy.
Training materials included:
• Talk NERDY 2020 Workshop online course: What is patient-centered outcomes research?
• How does medical research work?
• How do I analyze medical research?
• What does patient-centered research look like?
• What does patient-centered outcomes research look like?
• What’s my plan for staying involved and learning more?
2017-2019 Talk NERDY Training
The Talk NERDY training classes from 2017-2019 were held in-person in Washington, DC, Chicago, and Dallas, respectively. Members of the Talk NERDY Advisory Council attended and aided in the training of approximately 20 senior patients and family caregivers per training, with a focus on age-related macular degeneration, Alzheimer’s disease, atrial fibrillation, chronic pain, and heart valve disease. The training expanded their influence in aging-related health research and educated them on research advocacy.
Talk NERDY Alumni
The Talk NERDY program conducts its training not just for the sake of learning but to motivate participants to improve the research process. Talk NERDY graduates universally praise the program for teaching them how to be advocates for their own health care and for that of their loved ones. Graduates fill many health care and advocacy roles in research, policy, and health education-focused opportunities. Examples of how alumni serve include:
- As advisors on the FDA/Clinical Trials Transformation Initiative Patient Engagement Collaborative;
- As members of FDA’s Advisory Committees and Patient Engagement Collaborative;
- As consumer reviewers for the Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP);
- As patient advisers to PCORI-funded CER projects;
- As PCORI Patient Ambassadors, who are asked to present at briefings and serve on speaker panels;
- As reviewers for patient advocacy and health education materials;
- As a committee member for the National Quality Forum’s “Consensus Development Process (CDP) Cardiovascular Standing Committee;”
- Establishing a nonprofit organization, Memory Advocate Peers (MAP), which partners with CaringKind (the former Alzheimer’s Association Chapter in NYC) to train volunteers in peer-to-peer support for patients newly diagnosed with cognitive impairment and their care partners; and
- Creating and designing a funded Eugene Washington PCORI Engagement Awards grant request and program.
- Creating new disease-specific non-profits addressing pressing research questions in atrial fibrillation
Hear from past advocates about why they found the Talk NERDY to Me training so valuable, or check out these spotlight features on former Talk NERDY to Me trainees:
- Patty Peterson: Patty Peterson reflects on her patient advocacy journey
- Marlene Klein: Patient-advocate reflects on the importance of AMD Awareness Month
- Debbe McCall: Becoming your own patient-advocate
- Jim and Geri Taylor: Research advocacy training empowers patients and caregivers
- Terrie Montgomery: How a woman with Alzheimer’s disease lives every second