Reports from the first two series of meetings with the IMPACT Lived Experience Panel (LEP) are now available on the IMPACT website.  The two reports share highlights and insights gained during meetings with the LEP facilitated by IMPACT’s Patient Caregiver Relevant Outcomes Core and the Ethics and Regulation Core in the first cycle of the Lived Experience Panel. The LEP reflects a coordinated effort between the IMPACT Collaboratory and the Alzheimer’s Association.

The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research, by Antonia V. Bennett, PhD, Laura C. Hanson, MD, MPH, Gary Epstein-Lubow, MD, Sheryl Zimmerman, PhD, summarizes the discussions with the Lived Experience Panel and members from the Patient Caregiver Relevant Outcomes Core about research study outcomes that are important to people living with dementia and their care partners.

The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia, by Emily Largent, PhD, JD, RN, Jason Karlawish, MD Steve Joffe, MD, MPH, Gary Epstein-Lubow, MD, documents the insights gained from two meetings between members of IMPACT’s Ethics and Regulation Core and the Lived Experience Panel, featuring conversations regarding the ethical challenges related to conducting embedded pragmatic clinical trials among people living with dementia and their care partners using waivers of informed consent.