Paving the Way for Diverse & Accessible Trials

Learn how mobile research units and personalized transportation are transforming access for rural and underserved communities with Dr. Jyoti Angal, Director of Clinical Research at Avera Research Institute (ARI). Dr. Angal discusses the power of intentional recruitment and community outreach to foster inclusion and trust in clinical trials, earning them the 2024 SCRS Excellence in Patient Inclusion Award.  Don't miss expert advice on making clinical research more inclusive and engaging, with strategies to elevate your site's patient recruitment and retention efforts.

Transcript

Jimmy Bechtel: 0:00

Welcome to SCRS Talks provided by the Society for Clinical Research Sites. Thank you for joining us as we explore the latest insights, trends, and innovation shaping clinical research today. I'm Jimmy Bechtel, the Vice President of Site Engagement with the Society, and today I'm joined by Dr. Jyoti Angal, the Director of Clinical Research with Avera Research Institute. Avera Research Institute, or ARI, is the 2024 recipient of the SCRS Patient Inclusion Award, and I'm excited to be able to talk with you, Dr. Angal, about A little bit more of the nuance behind what you all did at Avera to receive that award and the great work that you're doing in patient inclusion. But before we jump into the topic today, I did want to take a few minutes to allow you to further introduce yourself so our audience can learn a little bit more about you and a little bit more about Avera.

Jyoti Angal: 0:54

Wonderful. Thank you, Jimmy. And thank you for having me here today. As you mentioned, my name is Jyoti Angal. I am the director for clinical research at Avera Research Institute. Avera is a large integrated health center. system that covers a five state region in the Midwest, and Avera research institute is a part of it. We have four office locations across the state and about 80 employees across the region. So My role at Avera is to provide oversight for clinical trials. We focus on the non oncology clinical work and have trials in different specialties across the system. I, my background is in public health and a lot of my work has been in public health research ethics, in particular working with the underserved and minority communities in our state. You all and it had been made very apparent on stage at the Global Site Solution Summit has been very effective in engaging your rural communities and the American Indian and Alaskan Native populations specifically. So I'd like to start off by having you tell us a little bit more about some of those strategies that you all developed to help reach those groups specifically. Yes. So we have been working alongside our communities for more than two decades and really have strived to act, be actively engaged and work with them as partners in our work. And so COVID really for everybody sort of brought up the challenge of, how do you bring research to people when people weren't able to come to you? And that has really sort of spurred some of our community engagement and strategies of taking research to people. And One of the things that we were able to do is to get a mobile research unit through an NIH funded supplement, and that really has helped with some of the outreach. So in our state, unlike some of the larger cities transportation services such as Uber or Lyft, They do not provide health rights. And so a lot of participants are not comfortable using that mode of transportation and bringing research to them has really helped with that. We offer transportation free for some participants, even if sponsors don't cover that. We, usually encourage sponsors to be able to support that, but in the event it's not, we haven't been able to do that. It really helps with some of the basic issues that many families face in terms of child care access and or those that have less resources. So being able to take the mobile unit out to them has helped. Many families you know, they may not Be comfortable having them do research study visits within the home. So being able to do them in a mobile setting has been very helpful. So in addition to actually being able to take research opportunities out to them we do engage with participants in other ways, such as being being present at, say, community fairs or health fairs, and really trying to educate the community individuals about research. As you may know you know, the clinical trial participation in minorities is, is very minimal. And and in audit, a lot of it is deals with some of the trust issues that they've faced with healthcare historically. And so being able to visit with them and talk to them about clinical research and benefits at large, outside of a research setting. study setting really helps to build some of those connections and improve trust in research.

Jimmy Bechtel: 4:32

That's great, Jyoti. And it sounds like there's a tremendous number of benefits that have been realized as a result of those mobile health units. And understanding that Mobile research units have been very pivotal in ARI's research efforts and the outreach Can you share a little bit about some of the challenges that you've encountered, but also some of the successes that have really stood out as a result of these units?

Jyoti Angal: 4:57

Yes. So you know, they are expensive. You know, there is an upfront cost and, and sort of managing them. So that can be I don't know if it's a challenge, but it's a lift to get something set up like that. And then I would say I think that the biggest success stories are we had this one participant who just had a traumatic experience with using a ride service transportation and Or just even being in a car with someone. Or coming to the research office because of anxiety issues. And so we just being in this space and being able to do the visits with her in the mobile units. Set up was really helpful. She appreciated that. Another thing that we found is trials or studies that sort of go over two to three years. You know, it's a commitment that the participants are giving to you. And sometimes in order to keep them engaged that long, or even collect missing data or wrap up the visit, being able to just take research to them and say, Hey, this is one last thing. We are here, let's wrap it up. Let's collect any missing data from the study has been helpful. So I think it helps with improving data capture. It just, it just improves with the whole participant experience.

Jimmy Bechtel: 6:19

I couldn't agree more. It seems to me that a lot of these benefits and, and the successes there, Obviously outweigh the challenges. It's just about getting over those challenges. I would agree that the financial aspect probably is a challenge. Not every site out there could necessarily afford to develop or implement research mobile research units like this. And I know that some of them try to do different community engagement modalities, whether they be those mobile units or something maybe a little bit of a lighter version where they're able to go out and engage that community. So I think it's I think it's great that you were able to prioritize this as an organization and implement these kinds of things. Dr. Angal, I want to also hone in a little bit on the concept around the free transportation for the participants. To ensure that accessibility. It sounds like that's a key step with what you're doing, right? You're not only just going out into the community with these units and talking about research, but you're also then enabling transportation, as you have mentioned a couple of times. So can you tell us a little bit more about how when this was implemented, it had that impact on on inclusivity, specifically?

Jyoti Angal: 7:29

Yeah, so I probably should have mentioned this earlier on so at the Institute, we, we just, we have a very diverse research portfolio, so we have faculty that are engaged in more observational, community based sort of research, and then we also do the clinical trials, so through the work, really improving the patient experience has been part of our mission from the very beginning. So the last 20 years or so, every study that we've done you know, even outside of clinical trials, we've always provided transportation. it could be in the form of, Maybe providing a Lyft ride or providing a gift voucher to, or maybe a gas card, for example, to cover for gas if they had their own car. One of the challenges we've seen in our area is participants could live 100 miles away and often don't have Reliable transportation to get them from point a to point B. So even so giving them a gas card may not always be the most practical option. And that's where I think we have a company car where we we've used that in the past or we paid for gas if they had a friend that could bring them along with them. So when I say free transportation, I think I want to focus on there's different ways you could do that in which you could assist with transportation. And we've been able to budget that for some of our grant funded studies and also for some of our sponsored trials as well.

Jimmy Bechtel: 8:57

It's a great point, Jyoti, because It kind of goes back to the point that we just were talking about. it doesn't necessarily necessitate a mobile research unit, right? A site doesn't have to go out and buy a van and outfit it for research and do all these things for it, which can cost tens of thousands of dollars that not every site has the ability to budget for. Or simply having the conversation with the patient and understanding. their limitations to being able to participate in clinical trials and finding ways that can make that a more comfortable and easy experience for them. For many of the reasons that you have already alluded to are those small steps that you can take as an organization to enabling some of those things. So thank you for making that point. It's really great.

Jyoti Angal: 9:43

Yeah, absolutely. I just thought of one more thing. You know, a lot of times when you call people inviting them to be in the study, there's some that, off the bat will say, Hey, I don't, I don't think I can get there and they then just shut off and don't listen to anything else that you have to say. And if you're able to up front, say, Hey, we can work with you on that. Then they're able to evaluate the benefit of that study for them. And so I think it just sets a different tone for that conversation.

Jimmy Bechtel: 10:13

That's exactly right. Absolutely. It provides them that experience that we know makes a huge difference in clinical trials. Right. Jyoti, I want to begin to wrap our conversation up here today, but I did want to ask what advice would you have to other research sites that are really trying to prioritize diversity and inclusion in their recruitment and retention strategies?

Jyoti Angal: 10:34

So we always say that, recruiting diverse participants it has to be intentional, right? You have to go into a project with the intent that I'm going to think about recruitment strategies that will help with identifying those that we really want to reach to. So, for example, If you know that you want to include Spanish speaking population because this is a condition that seems to affect that population the most, then you have to have a figure out a way to have consents that are translated up front or making sure that you have members on your team that can speak the language or have access to a translating agency. So those are some of the things strategies that you want to be thinking up front when you're designing the protocol. It can't be an afterthought and well, then by that time, it's too hard to sort of weave those things in. The other thing I think is we need to, especially for smaller sites, and if you're looking at you know, rurality is where it's a huge issue, is you have to think about going beyond physician Referrals and data capture through the EMR because that's the population that has access to health care. So you're missing out on those that don't. And then that's where I think the community wide outreach and recruitment has to be intentional. So you have to think about going beyond the, the, the common strategies of pulling the data and then calling these people. It has to be intentional. And then really trying to be a part of the community and engaging with the community outside of your research protocol. So we always say don't approach a community when you have a protocol in the hand, right? Because then you're telling them what to do rather than getting their input on how well you two could work together.

Jimmy Bechtel: 12:20

Absolutely. Those are great solutions and great things for our site community to think about as they're looking for ways to advance their DE and I initiatives. As well as some of the techniques and thought processes, I think kind of stepping back and thinking about company culture and some of the strategic things, not only the tactical things that you have mentioned are some ways that sites can really engage there. So again, dr. Jyoti, I want to thank you for being part of the conversation today. Thank you for sharing and congratulations again to you and your organization for this year's recipiency of that award.

Jyoti Angal: 12:54

Thank you so much. It was an honor for us to receive the award and be recognized for our work. And I thank you for the opportunity for us to be able to talk about it today.

Jimmy Bechtel: 13:03

Absolutely. Thank you again. And I want to make sure that for everyone listening, you don't forget to explore our other site focused SCRS talks made available to you all, like various publications and webinar opportunities on our website, mySCRS.org. You'll also find a wealth of content and details about upcoming engagement and connection opportunities with partners, like the ones we're talking to today and many others at our global and regional site solution summits being held throughout the year. Thanks again for listening and tuning in. And until next time.