Author: Joel Gingrich

I’m writing this blog on my way home from Idaho Falls, Idaho, tremendously excited to share with you all the progress being made to engage communities in clinical research. Through NIH’s new ENGAGE initiative, OSP and the NExTRAC are working to create an NIH-wide framework for including public voices in the planning, design, and conduct of clinical research. As part of this effort, OSP is hosting 12 “community conversations” around the country to learn more from individuals, families, and communities about how they think about clinical research – what it is, who is involved, and what it means (or doesn’t mean) to people in their everyday lives.

For the Idaho Falls conversation, folks spent the evening sharing their perspectives on a range of topics, including reflecting on the different types of clinical research studies, the clinical research lifecycle, and how they saw themselves and their communities benefiting from research. We also spent a lot of time digging into how clinical research priorities and study goals are set. It was clear that communities feel that they possess a unique vantage point that should help drive priority setting, which makes sense given that where you live is potentially the biggest driver of your health. Questions about returning “value” from the research conducted in communities was also on the forefront of people’s minds.

I am extremely grateful that people were eager to be candid, expressing a wide range of opinions. Issues sparking conversation ranged from politicization of empirical data, evolving trust in science, importance of mitigating inherent biases, and how to ensure representation and inclusiveness. While individual perspectives varied, there were clear threads of commonalities weaving throughout the conversation, including a genuine interest to find ways to sustain trustworthy relationships with researchers and the government so that we can collectively improve health outcomes for all.

By the end of the evening, folks were cautiously excited: how will NIH turn what we are saying into something with impact? When will we see results? The good news is that OSP has been largely learning from the NIH and Centers who have been doing this for some time. Additionally, if you’ve heard NIH Director, Monica Bertagnolli, you know that meeting patients where they are is one of her top priorities. Just this year, NIH launched the CARE for Health Initiative which works with communities to define the research questions that matter most to them by working with primary care clinics. By embedding these conversations in communities, we can work together to establish a foundation for sustained engagement with communities that are underrepresented in clinical research.

Finally, as I write this post, I am reflecting on how grateful I am to all the Idaho Falls folks (Idahoans, as I learned 😊) who came out to share their stories with us. We are learning so much from communities across the country and I encourage readers to keep tabs on our progress by checking out https://partnersinresearch.nih.gov/community-conversations/. Learning from people with different experiences, perspectives, and circumstances is what policy-making is all about and is necessary for making scientific research, and its outputs, most meaningful and impactful for all.

Dr. Lyric Jorgenson (l) has co-authored this blog with Dr. Suzanne Bakken (c) Ms. Chrstin Veasley (r). Dr. Bakken is a Professor of Biomedical Informatics at Columbia University.  Ms. Veasley is the co-founder and Director of the Chronic Pain Research Alliance.  Dr. Bakken and Ms. Veasley also serve as the co-chairs of the NIH ENGAGE Working Group.

I’m sure many of you have heard the old joke “Why do we park on driveways and drive on parkways?” Sometimes the English language just doesn’t make sense. Other times, however, it feels completely intuitive. Take for instance, the word “engage.” Just speaking the word aloud feels like a call to action. Appropriately, NIH launched its new ENGAGE initiative to be just that – a call to action for people and their communities to participate in the design and conduct of clinical research.

Traditionally, those who could benefit the most from clinical research have had the least involvement.  The ENGAGE initiative aims to flip this script by making public involvement in clinical research the rule and not the exception. By amplifying public voices, both healthy and sick, scientists can design more meaningful research studies and all Americans can benefit from the investment. 

The team tasked with making this vision a reality consists of a diverse set of motivated experts with many practical hands-on experiences, including patients, advocates, researchers, clinicians, non-profit organizations, and of course, members of the public.  They’ll be working to develop a bold strategy for maximizing public involvement throughout the clinical research continuum for NIH’s consideration.    

We cannot stress enough the prominent role that public outreach and community dialogue will play in the ultimate success of ENGAGE.  At this point, you might be asking yourself how we are planning to take on such an enormous task. First, we are shouting from the rafters that ENGAGE is open for business and we want to hear from you.  To help promote awareness, NIH has launched an ENGAGE website which contains case studies on NIH’s approach to engagement, information on team members, details on planned events, and much more.

The second part requires you – “engagement” is a two-way street!  We need everyone to help us spread the word about ENGAGE.  To get us started, NIH has released a request for community information to share the team’s vision and help us get a sense of your thoughts on these issues. Tell your co-workers, your neighbors, your friends, and anyone else who will listen that NIH wants to hear from you!

An essential pillar of our work will be to interact with people in ways, and in places, where they feel comfortable.  This means that it is vital for the team to visit communities across the country to hear your stories and needs first-hand.  The success of ENGAGE will be built on a robust program of public involvement in people’s own communities. We anticipate these listening sessions to kick-off in late 2024 and details will be provided on the ENGAGE website as soon as they are available.

We expect a lot of progress over the course of the next year so stay tuned. Also, to learn more, please tune into the upcoming Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) on June 17th as we will be discussing more on our planned efforts, including an upcoming webinar on July 17th.

This is just the start of a very exciting activity.  The ENGAGE initiative holds tremendous potential, but we need your help.  By creating a respectful space where all perspectives are welcome, we can work together to ensure that ENGAGE = better health for everyone.