Talk NERDY to Me
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) to Me program empowers older adults, their family caregivers, clinicians, and health researchers to learn about 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, with support from the Patient-Centered Outcomes Research Institute (PCORI), trains a new group of participants each year. Since 2017, the Talk NERDY to Me program has trained 126 patients and family caregivers on PCOR and the clinical trials process, how to develop research questions that are important to older patients and their family caregivers, and how to find PCOR opportunities and encourage others to do the same.
Talk NERDY graduates go on to serve on clinical trial review committees, institutional review boards, 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 to Me 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 to Me or participating in the program email [email protected].
This program is made possible with generous support from:
NERDY Training
2022 NERDY Training
The 2022 Talk NERDY to Me 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
2021 NERDY Training
The 2021 Talk NERDY to Me 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, 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.
Training materials included:
• Talk NERDY to Me 2021 Workshop online course: What is patient-centered outcomes research?
• How does medical research work?
• How is medical research analyzed?
• What do clinicians and researchers need to conduct PCOR?
• How can patients and family caregivers get involved?
• How can we continue to work together?
Cochrane Evidence Essentials Sessions One and Two
National Health Council Patient Engagement Rubric
Alliance for Aging Research Interviews with Researchers
2020 NERDY Training
The 2020 Talk NERDY to Me training was held virtually over six 1.5-hour sessions in October and November 2020. Fourteen members of the Talk NERDY to Me 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 to Me 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?
2019 NERDY Training
The 2019 Talk NERDY to Me training was held on Tuesday, November 19 – Thursday, November 21, 2019 in Dallas, TX. 11 members of the Talk NERDY to Me Advisory Council attended and aided in the training of 18 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.
For pictures of the 2019 training, visit the Alliance for Aging Research’s Facebook album.
Training materials included:
• 2019 Talk NERDY to Me Training Binder
• Webinar #1 on Patient Centered Outcomes Research (PCOR)
• Webinar #2 on Clinical Trials
• Friends of Cancer Research Online Advocacy Education
• Pay It Forward: Volunteering for a Clinical Trial
2018 NERDY Training
The 2018 Talk NERDY To Me training was held on Monday, June 11 – Wednesday, June 13, 2018 in Chicago, IL. 10 members of the Talk NERDY to Me Advisory Council attended and aided in the training of 21 senior patients and family caregivers with a focus on Alzheimer’s disease, sarcopenia, atrial fibrillation, and chronic pain. The training expanded their influence in aging-related health research and educated them on research advocacy.
The training was highly successful:
• 1 participant became a member of the Alzheimer’s Association’s Early Stage Support Group National Team and is speaking at the 2018 Alzheimer’s Association’s Chicago Walk.
• 2 participants worked together to build out their list serv for patients including providing webinars on patient-centered outcomes research.
• 1 atrial fibrillation patient, and former cardiac surgeon, served as a reviewer on an Alliance for Aging Research physician tip sheet on atrial fibrillation.
• 1 atrial fibrillation patient became a patient adviser to a PCORI/American Heart Association-funded project on shared-decision making.
• 1 participant became a member of the Peer Review Medical Research Program (PRMRP) of the Congressionally Directed Medical Research Programs (CDMRP) for the Department of Defense.
• 1 couple became active in understanding more about the clinical trials process and coverage issues for post-market studies.
• 5 participants are currently in the application process to become a PCORI Merit Reviewer and several participants have applied to become a PCORI Ambassador.
• 1 patient with chronic pain is applying for positions to represent the patient voice at the FDA, DOD, and PCORI.
• 1 participant, who is a family caregiver to someone with Alzheimer’s disease, applied to be a patient representative for the FDA.
• 1 patient with sarcopenia and atrial fibrillation reached out to a local chapter of a patient advocacy organization to get involved in clinical trial education.
• 1 participant is currently in the application process to enter a clinical trial.
Training resources:
2018 NERDY Research Advocacy Training Binder
Webinar #1 on Patient Centered Outcomes Research (PCOR)
Webinar #2 on Clinical Trials
Friends of Cancer Research Online Advocacy Education
2017 NERDY Training
The 2017 Talk NERDY To Me training was held on Tuesday, May 23 and Wednesday, May 24, 2017 in Washington, DC. 14 members of the Talk NERDY to Me Advisory Council attended and aided in the training of 16 senior patients and family caregivers with a focus on Alzheimer’s disease, sarcopenia, atrial fibrillation, and chronic pain. The training expanded their influence in aging-related health research and educated them on research advocacy.
The training was highly successful:
• 2 participants became members of the FDA/Clinical Trials Transformation Initiative Patient Engagement Collaborative and the national Alzheimer’s Association Early Stage Committee. One also participated in a clinical trial.
• 1 participant became a patient representative for the FDA.
• 1 participant became a PCORI Patient Ambassador, got the Governor of Pennsylvania to proclaim September as Pain Awareness Month, and worked to get pain clinics aware of American Chronic Pain Association.
• 1 participant became involved with their local Alzheimer’s Association chapter.
• 1 participant got engaged at the local level to teach advocacy to patients and provide educational materials on atrial fibrillation.
• 1 adviser, who also works for a large payer, set up meetings with chief medical directors to discuss how to engage in patient-centered research.
Training resources:
Advocacy Webinar Slides
Friends of Cancer Research Online Advocacy Education
Talk NERDY to Me Alumni
The Talk NERDY to Me program conducts its annual training not just for the sake of learning but to motivate participants to improve the research process. Talk NERDY graduates go on to serve on clinical trial review committees, institutional review boards, and other research, policy, and health education-focused opportunities. More specifically, examples of how alumni have served include:
- As advisors on the FDA/Clinical Trials Transformation Initiative Patient Engagement Collaborative;
- As committee members for the Peer Review Medical Research Program (PRMRP) of the Congressionally Directed Medical Research Programs (CDMRP) for the Department of Defense (DOD);
- 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 project manager lead on the development of a software platform for monitoring patients clinical adverse events for early-stage trials at Regeneron;
- 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.
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