Building the nation’s capacity to conduct pragmatic clinical trials embedded within healthcare systems for people living with dementia and their care partners
The NIA IMPACT Collaboratory Cores and Teams are creating a series of guidance documents to share important considerations and approaches to planning and conducting embedded pragmatic clinical trials (ePCTs) with people living with dementia (PLWD) and their care partners.
The first of these documents is, “Creating Effective Value Propositions” developed by the Implementation Core. The guide provides a definition and rationale for using value propositions to communicate value and address potential concerns of key stakeholders related to conducting ePCTs of programs/interventions in dementia care. Six steps for developing value propositions are described, and examples are shared.
Louise Phillips (Left) and Brenda Nicholson (Right)
Members of the Executive Committee for the IMPACT Engaging Partners Team have collaborated to create a guide for researchers seeking stakeholder advisors living with dementia.
Dr. Nicholson and Dr. Phillips provided three reasons why they participate as stakeholder advisors and research partners in dementia care research:
They hope to encourage more research on topics that are important and relevant for the well-being of people living with dementia and their families
They hope their participation will help convince researchers that it is valuable to include people living with dementia as research partners in their dementia care studies; so, in a sense, to “break through the glass ceiling” in this research area
They hope their involvement as research partners will be a clear and present reminder to research team members of the real human needs of people living with dementia, which are sometimes lost in the strong focus on research procedures and challenges.
Dr. Nicholson and Dr. Phillips drew on their own experiences to offer tips to researchers, but also emphasized that each person living with dementia has their own unique needs and circumstances to consider. Their tips suggest the importance of considering the needs of stakeholder advisors throughout the engagement process; from planning the meeting format and time commitment, through post-meeting follow-up. They stress the importance of providing multiple opportunities for advisors to share their ideas and have their voices heard. The full perspective piece can be found at this link.
Citation: Stakeholder Perspectives: Engaging and Working Effectively with Individuals Living with Dementia as Stakeholder Advisors and Research Partners. NIA IMPACT Collaboratory; 2021. doi: doi.org/10.58234/32478403
September 2021 – In Grand Rounds 19, Dr. Mor discusses the complexities of making changes in health care systems through four examples of embedded pragmatic clinical trials.
Speaker
Vincent Mor, PhD
Florence Grant Pirce Professor of Community Health
Brown University School of Public Health
