At the U.S. Department of Health and Human Services (HHS), we are committed to addressing inequities and advancing equity in health care, which begins with high-quality health research. HHS is also actively working to shift the culture, resources, and approaches to institutionalize and sustain a focus on equity over time. This includes promoting shifts in practices that have traditionally perpetuated inequities in research and research participation.
Participants in research should reflect the diversity of our population, including race, ethnicity, sexual orientation and gender identity, age, sex, genetics, socio-economic status, educational background, geographic location, and so forth. The lack of diversity among research participants has serious ethical and practical consequences, including the ability to generalize study results and address the health needs of our communities. It also means that certain groups may not have ready access to research, are not able to take advantage of the resources, or experience the innovations that research may bring to their communities or groups.
Financial barriers are often cited as a key reason for why research participation is out of reach for many. Research studies are often based at academic medical centers, which creates barriers for those who cannot easily reach these locations or who cannot afford the travel and other research-related expenses. Taking part in research also requires regimented attendance, participation in lengthy research-related activities, and other things that may be difficult for people who cannot afford to miss a paycheck or pay others to take on their caregiver responsibilities. As a result, we see chronically skewed demographics in research enrollment and disparities between those who can afford to participate in research and those who cannot. If we accept that research participation shouldn’t be accessible only to those who can afford to participate, what role does payment play in expanding access to research?
The mission of the Office for Human Research Protections (OHRP) within the Office of the Assistant Secretary for Health is to protect the rights, welfare, and well-being of people who participate in research studies that HHS supports or conducts. On Thursday, September 15, 2022, OHRP will be hosting its 5th Annual Exploratory Workshop Beyond Altruism – Exploring Payment for Research Participation. This event will explore the ethics and practical challenges of paying people for their participation in research. The prominent list of panelists will discuss whether and how payment advances equity and justice, what research participants think about payment, and how the research enterprise, including sponsors, researchers, IRB reviewers, and others, need to respond. The event is free and can be watched online across the nation and overseas. This is a current and important topic that promotes equity and inclusivity in research and echoes the HHS mission to enhance the health and well-beings of all Americans, as well as foster sound and equitable research practices.
This event will be streamed live on Thursday, September 15, from 10 a.m. to 4 p.m. EST. Visit the event website for details and access to the video. I hope that you will join me and our OHRP colleagues at this event!