The NIA IMPACT Collaboratory’s Stakeholder Engagement Team (SET) conducted an all-day meeting on December 3, 2019 at Hebrew SeniorLife in Boston, MA. Attendees included the SET, the Stakeholder Advisory Committee (SAC), and additional participants relevant to the IMPACT Collaboratory’s efforts regarding stakeholder engagement. Click here to see the full list of participants. .
The objectives were to:
1) Review the role of the SAC;
2) Provide advice to the IMPACT Collaboratory on how to integrate stakeholder engagement into its mission;
3) Strategize about the optimal way to assist the selection and guidance of pilot project; and
4) Discuss priority topics to address in guidance materials.
After a welcome from Gary Epstein-Lubow, MD, and Katie Maslow, MSW, Susan Mitchell, MD, MPH, presented an overview of the IMPACT Collaboratory. This was followed by personal messages about the importance of research to address aspects of the lived experience of dementia presented by a person living with dementia, Louise Phillips, MD, and a family caregiver and dementia care clinician, Katie Brandt, MIM.
Historic definitions of SE as prepared by the Patient-Centered Outcomes Research Institute were provided by Lori Frank, PhD, MA. Ellen Tambor, MA, presented SE work from the original NIH Collaboratory; this was followed by information from Katie Maslow about SE specific to dementia care research in the U.S. The NIA IMPACT Collaboratory’s process for supporting pilot ePCTs was reviewed by Laurie Herndon, MSN, followed by suggestions from Jill Harrison, PhD, as to how stakeholders can be integrated into the pilot study processes.
In the afternoon, pilot study expectations were further explored as they relate to the involvement and engagement of people with lived experiences of dementia as well as a wide array of clinicians, service providers, health care system leaders, and payers.
Antonia Bennett, PhD, of the Collaboratory’s Patient and Caregiver Reported Outcomes (PCRO) Core and Monica Moreno, BS, of the Alzheimer’s Association described the development of a “Lived Experience Panel”. This was followed by a discussion of engaging health systems leaders which was led by Alice Bonner, PhD, RN, and included Lee Jennings, MD, MSHS, David Gifford, MD, MPH, and others. The final session was an overview of selected advice from the SAC emanating from the day.
Outcomes of the meeting included:
1) Successful orientation of SAC members;
2) Preliminary plans for clarifying definitions and processes regarding SE within the Collaboratory;
3) Review of SE activities related to pilot study investigators; and
4) Discussion of SE activities including development of a Lived Experiences Panel, guidance documents for investigators, a logic model for SE activities within the Collaboratory, and methods for evaluation of SE activities.