Author: Erin Luers

Check out the new LTC Data Cooperative, a new resource for investigators interested in improving care in nursing homes!

Posted on by Erin Luers

We are excited to share information about the Long-Term Care (LTC) Data Cooperative, and invite you to check out the website to learn more. Led by American Health Care Association (AHCA), the LTC Data Cooperative is an outgrowth of work led by Vince Mor, PhD in response to COVID-19.  This initiative brings together healthcare systems and data management resources to create the largest integrated database of detailed, normalized, electronic health record (EHR) data from nursing homes (NH) in the United States. The EHR data can also be linked to Medicare claims data.

The LTC Data Cooperative’s comprehensive data set will facilitate researchers’ ability to test the impact of treatments and other interventions intended to better the lives of NH residents through observational studies and pragmatic clinical trials. This will enable researchers to generate real-world evidence on the effectiveness of different treatments and care practices for older adults, individuals with disabilities, and people living with dementia in nursing homes.
In addition, the LTC Data Cooperative will serve four broad functions:

  • Assist providers with health care operations, including care coordination for residents who transfer between skilled nursing facilities
  • Support public health monitoring for medical conditions and infections, including COVID-19
  • Enable observational studies of the LTC population, ranging from policy evaluations to epidemiological studies to pharmaco-epidemiological studies
  • Facilitate provider and patient recruitment into clinical research studies, including stage 3 and 4 embedded pragmatic clinical trials

Vincent Mor, PhD, reflects that “Thirty years ago, the minimum data set made it possible to characterize the needs of nursing home residents and to document the impact of new treatments and policies. This initiative transforms this effort by linking ‘real-time’ clinical data, including lab results and orders, in ways that can transform the delivery of care to the increasingly vulnerable population of nursing home residents.”

Questions?
Email us with questions or to learn more: LTCDataCooperative@AHCA.org

Apply Now for the 3rd Annual Virtual ePCT Training Workshop | January 25-26, 2023

Posted on by Erin Luers

Building Skills to Conduct Embedded Pragmatic Clinical Trials for People Living with Dementia and their Care Partners

Wednesday, January 25th, 2023  |  11:00am - 3:30pm ET
Thursday, January 26th, 2023  |  11:00am - 5:00pm ET

Apply here!

This year’s modules will focus on:

  • Using real-world data to identify PLWD and ascertain outcomes in ePCTs
  • Designing the implementation evaluation for an ePCT
  • Defining a pilot: What is a pilot study for an ePCT?

The IMPACT Collaboratory will hold our third annual Training Workshop on January 25-26, 2023 entitled Building Skills to Conduct Embedded Pragmatic Clinical Trials (ePCTs) among People Living with Dementia (PLWD) and their Care Partners. This 1.5-day virtual workshop features all new material to build a foundation in practical aspects of designing and conducting ePCTs in Alzheimer’s disease (AD) and AD-related dementias (ADRD). The workshop will include a combination of activities including: panel discussions, small group sessions, and networking opportunities with experts in the field.

We are inviting applications from early to mid-stage researchers who seek to develop competence in designing and conducting ePCTs of non-pharmacological interventions embedded in health care systems for PLWD and care partners.

Upon completion of the workshop, participants will be able to:

  • Transmit knowledge about designing and conducting ePCTs among PLWD and care partners in health care systems that integrates considerations related to identifying PLWD and ascertaining pragmatic outcomes
  • Problem-solve common challenges in designing and conducting ePCTs for PLWD and care partners
  • Apply the acquired knowledge to move their current and future research in ePCTs forward, including applying for competitive funding

Successful applicants will be expected to complete selected readings and online training prior to the workshop. All participants are expected to attend and participate in the entire 1.5-day event.

HOW TO APPLY

Please submit your online application using the following link:
IMPACT Training Workshop Application

Deadline: October 21, 2022

Eligibility Criteria:

  • Applicants should have an MD, PhD, or equivalent research degree
  • Hold a full-time position at an academic or research organization in the United States
  • Early-stage investigators pursuing careers conducting ePCTs in AD/ADRD
  • Mid-career investigators seeking to pursue research on ePCTs in AD/ADRD

Individuals from underrepresented racial and ethnic groups as well as individuals with disabilities are encouraged to apply.

Selection Criteria: Applicants will be selected based on their demonstrated commitment to improving care of PLWD and/or their care partners through the conduct of ePCTs in HCS and the potential impact of the workshop on promoting the applicant’s career in this area.

Find the working agenda and more information about the workshop on our website at impactcollaboratory.org/training-workshop. Email IMPACTcollaboratory@hsl.harvard.edu with questions regarding this opportunity.

Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias

Posted on by Erin Luers

At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America’s diverse population. Learn more at this link.

The Patient-Centered Outcomes Research Institute (PCORI)

Posted on by Erin Luers

PCORI is a leader in driving US clinical research to becomes more patient-centered. They are committed to ensuring that patients and other healthcare stakeholders are involved throughout the research process, offering awards to promote engagement in research, dissemination and implementation projects, methodology research, and the development of research infrastructure.

Introduction to the Science of Recruitment and Retention Among Ethnically Diverse Populations

Posted on by Erin Luers

September 1, 2010

This paper is an introduction to a special issue of The Gerontologist journal. It provides an overview of important theoretical and conceptual frameworks that seek to address the shortcomings of previous models of recruiting diverse populations and reviews strategies for reaching out to these diverse groups.

Abstract

Recruitment and retention of research participants is evolving with the changing demographics of the American population, in particular its growing diversity. The cultural-historical background and sociopolitical conditions of each diverse group poses unique challenges in developing successful recruitment and retention methods and strategies. This critical collection of articles demonstrates important theoretical and conceptual frameworks that seek to address the shortcomings of previous models of recruiting diverse populations. Understanding the key components of cultural distinctions, such as values and beliefs, community cohesion, and collective history, has proven to be instrumental in reaching out to these diverse groups. This important strategy has allowed researchers to overcome the barriers that have been fostered in the past and has built the trust necessary to move forward into an inclusive approach to aging research. Not to be overlooked, an important factor to achieving success in recruitment and retention of diverse populations is having access to resources that allow for ongoing connection with research participants.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3106368/

Beyond diversity to inclusion: recruitment and retention of diverse groups in Alzheimer research

Posted on by Erin Luers

July 1, 2010

This paper provides a discussion on using an inclusive approach to recruitment and retention of diverse groups in Alzheimer research by framing the issues of diversity and inclusion, outlining specific inclusive strategies for researchers, providing ideas on a retooling process to prepare researchers to use inclusive approaches.

Abstract

This article provides a discussion on using an inclusive approach to recruitment and retention of diverse groups in Alzheimer research. The discussion begins by framing the issues of diversity and inclusion and reviewing some of the conceptual and theoretical frameworks that can help researchers develop an inclusive approach to research. Next, some specific inclusive strategies that the researchers can use to recruit and retain diverse samples are discussed. Last, ideas on a retooling process that can prepare researchers to use inclusive approaches are discussed. Ultimately, an inclusive approach to recruitment and retention goes beyond diversity and instead, emphasizes shared interest and representation by researchers and participants in the research process.

Read the full article at this link.

The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia

Posted on by Erin Luers

August 18, 2022

Authors: Emily Largent, PhD, JD, RN, Jason Karlawish, MD Steve Joffe, MD, MPH, Gary Epstein-Lubow, MD

Description: This report 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.

Read the full report here.

Citation: Largent E, Karlawish J, Joffe S, Epstein-Lubow G. The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia. NIA IMPACT Collaboratory; 2022. doi: doi.org/10.58234/92591162
Click to view LEP Report | Ethics & Regulation

The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research

Posted on by Erin Luers

August 18, 2022

Authors: Antonia V. Bennett, PhD, Laura C. Hanson, MD, MPH, Gary Epstein-Lubow, MD, Sheryl Zimmerman, PhD

Description: Summarizes the discussions with the Lived Experience Panel and members from the Patient and Caregiver Relevant Outcomes Core about research study outcomes that are important to people living with dementia and their care partners.

Read the full report here.

Citation: Bennett AV, Hanson LC, Epstein-Lubow G, Zimmerman SI. The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research. NIA IMPACT Collaboratory; 2022. doi: doi.org/10.58234/82222234
Click to view LEP Report | Patient & Caregiver Relevant Outcomes