Healthcare-Generated Data to Identify People Living with Dementia for Embedded Pragmatic Trials

January 2022 – In Grand Rounds 23, Dr. Bynum describes the use of data to identify people living with dementia as well as strengths, challenges and potential equity gaps when using a healthcare-generated data approach in pragmatic clinical trials.

Speaker

Julie Bynum, MD, MPH

Margaret Terpenning Professor of Medicine

University of Michigan

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Learning Objectives

  • Understand the use of data to achieve pragmatic study aims
  • Identify strengths & challenges when use Healthcare-generated data (billing or electronic health record data) for participant identification
  • Identify threats to Health Equity and Generalizability related to choices about data use.

 

Partnering with People Living with Dementia and Care Partners in Embedded Pragmatic Clinical Trials

December 2021 – Grand Rounds 22 features a panel of participants sharing their experiences in stakeholder engagement in ePCTs for people living with AD/ADRD and their care partners. Perspectives shared include that of researcher, stakeholder engagement expert and people living with dementia.

Webinar Slides

Speakers

Gary Epstein-Lubow, MD
Team Leader, IMPACT Engaging Partners Team
Associate Professor of Psychiatry and Human Behavior
Associate Professor of Medical Science, Alpert Medical School of Brown University
Associate Professor of Health Services, Policy and Practice, Brown University School of Public Health

 

Heidi Gil
Executive Committee Member, IMPACT Engaging Partners Team
Chief Strategy Officer, LiveWell Alliance, Inc.

Learning Objectives

    • Understand the need/benefits of engaging people living with dementia and care partners in every aspect of dementia care research
    • Identify how all stakeholders can be empowered and engaged as co-partners in research
    • Explore lessons learned and resources available to conduct research differently

Challenges conducting pragmatic trials of interventions for care partners of people living with dementia

November 18, 2021 – In Grand Rounds 21, Drs. Penfold, Hanson, and Fortinsky, describe challenges from three pragmatic trials to share lessons learned and ideas for how to overcome these challenges in future research.

Webinar Slides

 

 

 

 

 

Robert Penfold, PhD
Senior Investigator, Kaiser Permanente
Washington Health Research Institute

 

 

 

 

 

 

Leah Hanson, PhD
Senior Research Investigator,
Health Partners Institute

 

 

 

 

 

 

Richard H. Fortinsky, PhD
Professor and Health Net, Inc. Endowed Chair in Geriatrics and Gerontology
UConn Center on Aging

Learning Objectives

  • Be familiar with some legal, ethical and logistical barriers to recruiting caregivers and measuring caregiver outcomes
  • To gain knowledge about the potential for mindfulness to reduce stress and depressive symptoms in care partners
  • Explain how issues involving consent and HIPAA authorization could be addressed and resolved during the IRB approval process in pragmatic trials compared to more conventional clinical trials.

Dyadic designs, their foundation on theory and analytic methods

October 2021 – In Grand Rounds 20, Dr. Lyons explains a dyadic approach to illness and care, as well as the role of theory and concepts, design and methodological considerations, and family and culture in dyadic research.

Webinar Slides

Speaker

Karen S. Lyons, PhD, FGSA (she/hers)

Professor

Boston College
William F. Connell School of Nursing
@KSLCareDyads

Learning Objectives

  • Understand what is meant by “dyad as unit of analysis or focus.”
  • Understand the importance of theory and concepts as foundations to dyadic research.
  • Understand some of the design and methodological considerations in designing and conducting dyadic research.

Challenges Implementing Innovative Programs in Long Term Care: Examples from Pragmatic Trials

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

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Learning Objectives

  • Understand the complexities of Making Changes in Health Care Systems
  • Understand the kinds of Implementation Challenges that arise in conducting ePCTs in nursing homes
  • Understand the Implications of how difficult it is to Change Care Practices to improve Dementia care

Promises and Pitfalls of Existing Data in Nursing Homes

June 2021 – In Grand Rounds 18, Drs. Teno and Saliba discuss the use of administrative data, including the Minimum Data Set (MDS) in pragmatic clinical trials and share examples of how they have used this data in their own pragmatic clinical trials.

Webinar Slides

Speakers

 

Joan Teno, MD, MS

Joan M. Teno, MD, MS
Professor of Medicine, Oregon Health & Science University
Adjunct Professor of Health Services, Policy, & Research, Brown University School of Public Health Physician Scientist, VA Los Angeles, GRECC and HSR&D COIN

Debra Saliba, MD, MPH

Debra Saliba, MD, MPH
Anna & Harry Borun Endowed Chair, Geriatrics and Gerontology, UCLA
Director, UCLA/JH Borun Center for Gerontological Research
Physician Scientist, VA Los Angeles, GRECC and HSR&D COIN

Webinar Recording

 

 

Learning Objectives

  • Pros and cons of administrative data for use in pragmatic trials
  • Address potential limitations of using administrative data to infer the quality of care
  • Discuss a controversial claim that pragmatic trials of decision-making for persons with dementia need to consider adding PCROs:
    - Addressing understanding, coercion
    - Addressing safety, “balance measures
  • Identify advantages & challenges of using MDS assessment items
  • Describe some of the MDS data elements and their performance implications for persons with cognitive impairment
  • Understand performance of resident self-report items
  • Identify pragmatic skills for direct interviews

Pilot and feasibility studies for pragmatic cluster randomised trials

May 2021 – In Grand Rounds 17, Claire Chan presents on the growing number of studies described as pilot or feasibility studies, and describes the challenges in defining and designing these studies.

Webinar Slides

Speaker

Claire Chan, MSc

Statistician
Institute of Population Health Sciences (IPHS)

Queen Mary University of London

Webinar Recording

Learning Objectives

  • To understand what pilot and feasibility studies are and how to design them
  • To understand some of the special considerations for pilot and feasibility studies in advance of a pragmatic trial
  • To understand some of the special considerations for cluster randomised trials
woman standing at Grand Canyon

Mission Moment: Dr. Brenda Nicholson on Living with Dementia During COVID-19

woman standing at Grand CanyonBrenda Nicholson, MD, a member of the IMPACT Collaboratory Stakeholder Engagement Team Executive Committee and person living with dementia, shares her reflections on living with dementia in the context of COVID-19. Dr. Nicholson’s talk was the mission moment for the IMPACT Collaboratory Steering Committee & Business Planning Meeting on April 6, 2021.  Dr. Nicholson shares her unique experience living with dementia and provides a valuable perspective into the feelings of both people living with dementia and their care partners.

 

 

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Inclusion, diversity, and equity in pragmatic clinical trials

April 2020 – In Grand Rounds 16, Dr. Wilkins discusses the definitions of inclusion, diversity and equity in pragmatic clinical trials, and offers insight into how research can be more inclusive and diverse.

Webinar Slides

Speaker

Consuelo H. Wilkins

Consuelo H. Wilkins, MD, MSCI
Vice President for Health Equity, VUMC
Associate Dean for Health Equity, Vanderbilt SOM
Associate Director, Vanderbilt Institute for Clinical and Translational Science
Professor of Medicine, Division of Geriatric Medicine

Webinar Recording