Caregiver Role in Clinical Trials Project

Overview:

Although families and caregivers have valuable perspectives on all aspects of health care, they do not
necessarily have a formally defined role in the clinical trials process. The National Alliance for
Caregiving (NAC) is convening a 3-part roundtable series to identify and communicate the value of
caregivers’ participation in clinical drug trials and to discuss strategies for improving how researchers
engage caregivers from populations most impacted by structural inequities. The roundtables will be
composed of:
1. Caregiver experts (caregivers and caregiver advocates)
2. Clinical trials experts (medical product innovators, industry professionals)
3. A subset of the caregiver and/or clinical trials expert cohorts.

These virtual roundtable discussions will result in caregiver-informed recommendations that will be
published and made publicly available.

The Opportunity:

The purpose of the virtual roundtables is to identify and communicate the value of caregivers’
participation in clinical drug trials and generate recommendations for improving how researchers
engage caregivers from populations most impacted by structural inequities in the clinical trials
process, especially the recruitment and retention of trial participants. A core component of this project
is to ensure that there is input from caregivers, especially those most impacted by structural inequities
(e.g., black, indigenous, people of color, rural communities) and for these voices to be central in the
establishment of best practices.

The caregiver advisory group will work closely with the National Alliance for Caregiving with
support from Health Leads. The following caregiver perspectives would be especially helpful:

• Caregivers and caregiver advocates who have experienced clinical trials personally or by
supporting those they care for. This includes:
o Inquired about a clinical trial or referred by someone (e.g., healthcare provider)
o Applied and was denied or screened and did not meet inclusion criteria
o Enrollment in a clinical trial, but did not complete the trial
o Completed the entire process
• Caregivers and caregiver advocates who represent the lived experience of
underrepresented communities (e.g., black, indigenous, people of color, rural
communities).
Virtual Roundtable Convenings:

We will achieve these objectives through a series of convenings.

Convening Month Participants Goal

Number

*1 November 2021 Caregiver experts Identify caregivers’ value in

(caregivers and caregiver participating in clinical trials,
advocates) identify potential opportunities for
caregiver participation

2 November 2021
Clinical Trials Experts
(Medical Product Innovators,
Industry Professionals,
Regulatory Officials, and
Researchers)
Map the issue, highlight current
initiatives, identify potential
opportunities and challenges for
caregiver participation

*3 December 2021 Caregivers and/or Clinical Evaluate and prioritize potential

Trials experts opportunities, co-design
actionable recommendations

*We are recruiting caregiver experts for the first and third convenings.

Roundtable Discussion Topics:

• Current strategies to engage diverse caregivers and families in clinical trials

• Define current role(s) of family caregivers in clinical trials recruitment
• Identify opportunities to include or expand the role(s) of family caregivers in clinical drug
trial recruitment.

Who Should Attend?

● Caregivers
○ Family member, friend, or neighbor who provides care for someone with a
serious illness or disability
● Individuals receiving care
● Caregiver Advocates
● Community Based Care Providers
● Community Outreach and Engagement
● Patient and Family Engagement
● Patient and Family Advocacy
● Patient and Family Support Communications
Compensation:
Caregivers who are not compensated by their employers for participating will receive $100 per
roundtable for their time and expertise; this includes up to one hour of pre and post work for each
convening.

Anticipated time commitment:

2 hours - caregiver expert roundtable
2 hours - caregiver and/or clinical trial roundtable
2 hours - pre and post work
Total: 6 hours

If you are interested in participating, please sign up by completing this form by Monday, Nov 8,
2021

If you have any questions, please reach out to Tigee Hill at thill@healthleadsusa.org.

Thank you!