​Reports

 

Resource Name
  
Resource Date
  
Core/Team
  
Description
2023-24 Lived Experience Panel: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia7/10/2024Patient and Caregiver Relevant Outcomes Core; Stakeholder Engagement Team
(Report)  An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from a series of 3 meetings with the LEP around the insights and lessons learned between the IMPACT Lived Experience Panel and members of the Patient and Caregiver Relevant Outcomes Core. The topic of discussion was goal-concordant care as it occurs in the real world and as it is measured in research. Panel members discussed their experiences talking about their goals of care with their healthcare providers and how thinking about their goals could help them make healthcare decisions. Discussions throughout these meetings unveiled some surprising discordance between panel members’ experiences and researcher expectations, which resulted in a series of challenges and recommendations for future efforts.  Read the full report to learn more!
CAPRA Data Brief - Health care use patterns among older adults with dementia3/20/2024Technical Data Core
IMPACT’s Cameron Gettel, MD and Julie Bynum, MD, MPH are among the authors of the CAPRA Data Brief on health care use patterns among older adults with dementia. The brief was developed by the Center to Accelerate Population Research on Alzheimer’s (CAPRA) at the University of Michigan.

Authors demonstrated the use of Medicare claims to examine healthcare use patterns among older adults with ADRD using datasets provided by the Impact Collaboratory. The brief cites the increase in emergency care, hospitalization, and skilled nursing facility admissions for Medicare recipients and an increased need for planning and care for people with Alzheimer’s Disease and Related Dementias (ADRD) in the U.S.
Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research10/3/2023Health Equity Team; Stakeholder Engagement Team
(Report) An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from a series of meetings with the LEP, the Health Equity Team, and the Engaging Partners Team regarding priorities for health equity in dementia care and research.
Voces del panel de experiencias de vida: Equidad en salud en la atención e investigación de la demencia10/3/2023
(Report) Spanish: An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from series of meetings with the LEP around ethical challenges in conducting research using a waiver of informed consent with people living with dementia
Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research4/1/2021Patient and Caregiver Relevant Outcomes Core; Stakeholder Engagement Team
(Report) An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from a series of meetings with the LEP around priorities for person and caregiver relevant outcomes in dementia intervention research
Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia4/1/2021Ethics and Regulation Core; Stakeholder Engagement Team
(Report) An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from series of meetings with the LEP around ethical challenges in conducting research using a waiver of informed consent with people living with dementia.
Stakeholder Engagement Report on Research Priorities3/31/2020Stakeholder Engagement Team
This report from the IMPACT Stakeholder Engagement Team (SET), led by Gary Epstein-Lubow, MD, and Katie Maslow, MSW, regarding stakeholder research priorities, is a compilation of work beginning with input from the NIA IMPACT Collaboratory’s Stakeholder Advisory Committee (SAC) and finalized after additional SET discussion during and following the NIA IMPACT Collaboratory in-person meeting January 28 & 29, 2020. SET conducted a one-day in-person meeting on December 3, 2019 including members of the SAC and additional participants relevant to the IMPACT Collaboratory’s efforts regarding stakeholder engagement.