Reflections on a year of partnership: Conversation with JDRF

One year ago, JDRF launched Antidote Match on the Clinical Trials Connection page. To mark the occasion, we sat down with our two main collaborators, Sydney Yovic, AVP of Research Operations and Mission, and Monica Harrington, Manager of Research Communications, to reflect on what we have learned over the last 12 months and to talk about the next steps for the partnership.

Partnering to advance diabetes clinical trials

What brought you both to JDRF and to the diabetes field in general?

Monica Harrington (MH): I came to JDRF because I wanted to work in a place where I could really believe in the mission […] We are here for the community of people who are dealing with this disease on a daily basis, and it makes me feel inspired and also proud of the work we do to help them do that better.

Sydney Yovic (SY): My background is in public health and so I always wanted to work in a biomedical research foundation […] My uncle passed away from Type 1 diabetes in his mid-30s so my family has been involved in the organization for a long time. It feels good to serve in my uncle’s honor and to get to meet and help a lot of amazing people who are living with the disease.

This is a question for both of you, but maybe you could come at it from different perspectives based on the types of work that you do. Why are clinical trials important?

SY: We really want to help people recruit for trials so that we can get therapies to patients. And something I’m learning a little more, at least since I’ve been working on the Mission team, is that the Type 1 diabetes community is so interested in clinical trials.

MH: It’s important because it’s the only way that we get new therapies. We have to know if something is safe, we have to know if it works, and we have to do that in an organized fashion, coming from a science perspective. We can’t just leave it up to chance … This is the process we have to go through so that we can go to the community and say: “We know this will work for you.” […] I also think it is important to say to the community: “You get to have a role in this. You can have a role in making the outlook for your disease management - or hopefully, your disease cure - more promising than it ever has been.”

Do you think that what’s coming down the pipeline, at least what you know about, is focused towards finding a cure, or do you feel like we are still taking incremental steps to get to that place?

MH: That’s a good question. I think honestly, from my perspective, it’s both. I mean it’s always going to be incremental steps. A: That’s science. B: That’s life. And that’s just the way things work. We do have trials that are focused on how are we going to cure or prevent this disease […] But we also need people to do as well as possible so that they are healthy and can take advantage of a cure once we figure out how that’s going to work. All of those things are important and that’s why we are working on all of those fronts, but it is going to be incremental. It’s the nature of the beast.

The next logical question for me, at least, is why did you choose to partner with Antidote?

SY: JDRF has offered a clinical trial matching tool to our community since 2009. And the tool we had […] wasn’t working at the end of its days. […] I think Antidote was best aligned with where JDRF wanted to go and we saw the most promise in your technology, after looking at other vendors and talking to other organizations.

Have you received any feedback on the tool? Either positive or negative.

MH: We’ve received a ton of feedback on the tool and partly because we’ve made a concerted effort with our awareness campaign to reach out to people and demonstrate it to them. […] We’ve actually been able to watch them use it, see their reactions, and it’s been pretty unfiltered, so we aren’t just selecting people that we know are going to land one way or the other. And the feedback that we’ve gotten has been overwhelmingly positive and resoundingly so. People are like, “This is fantastic, this is exactly what we need, I’m so excited this is here, I need to tell all of these people about it.” […] We have a very decentralized chapter-level local outreach system, and a lot of the people who work at that level have been really excited about it too and wanting to share it with their constituents. “Where can I find a clinical trial?” is a question that we get all of the time, especially from people who have been newly diagnosed […] - they are very motivated, they want to be involved, and we basically have been able to, because of our partnership with Antidote, give them exactly what they need to find that information.

SY: The tool itself is just so easy to use. When I was in Detroit at a summit and we were promoting the tool, a seven-year-old totally rocked it. […] It was so funny to see the seven-year-old go through it and answer his own questions on his own Type 1 diabetes, and get his list of trial matches. It was just a special moment.

We’ve been at this about a year now and we’ve learned a lot in that time. We’ve definitely had some ups and downs. What do you think has been the biggest learning from the last year?

SY: We need to do more. We need to get this out there. For me the downs are far outweighed by the ups. People love the tool. It is so easy. From a system perspective, glitches are few and far between. I think everyone wants more of this. I think the other thing is that we also need to educate our constituents. There are a lot of people in the Type 1 community that understand trials, that have been a part of a trial, but I think that there are some people who still don’t quite understand […] what a clinical trial is? What does participation in a clinical trial mean? […] I think we need to talk to people about what it means to participate in a clinical trial, what the benefits are. […] We did a focus group with some of the people from our chapter of all of the reasons you would, or what does participation in a clinical trial mean…

MH: What are the factors that would influence your decision to participate in a clinical trial?

What are they?

MH: The opportunity to be part of the cure, the opportunity to participate in research and do something exciting and new, access to innovative therapies, doing your part for the community. More on the negative side were things like: I don’t know what would happen, is it going to take a lot of time, is it going to interfere with my current management - that was the gist of it.

SY: But the positive ones were exhilarating positives. I don’t think financial compensation really came up, I think it was just being a part of something bigger than you. […] We should talk about how clinical trial participation is good across the board and not because people want to try an AP system, especially if they are on a waiting list for a Medtronic system, or they are waiting for a DexCom or Tandem to come out. I think that’s where we should try to push people a little if we can. I guess that was my learning: People really want this, so we need to get the word out as much as we can, accompanied by education.

MH: I would say the same thing, I think the biggest positive learning that we’ve had is that people are really hungry for this, and I think that if you build an elegant tool and deliver it to the community in an elegant way, they will eat it up. I was even surprised by how enthusiastically and how quickly people have adopted it and taken to it. So I think that was really cool. I think one thing that we are still learning is how to communicate clearly about what the tool does and doesn’t do. […] We’ve sort of developed our language and we talk about it appropriately, but I think there’s still some misperceptions on people’s part that this is a cool search. But it’s not a search. It’s a match. It’s different.

SY: I think this [tool] will push researchers to make sure that their ClinicalTrials.gov listing is accurate and complete […] so I do think we are going to see an increase of better data, hopefully.

We know from our experience that the T1D community is really engaged. They are out there, they are looking for trials. But, we do still run into people in the non-profit or NGO space who are really concerned about diving into clinical trials and take no stance whatsoever on medical research. What would you say to someone who is really hesitant to bring research up as an option to their community?

MH: When you are living with a disease of any kind, it’s tough. Science and medical research can make that better – they’re the only way we can make that better. We need to understand how things are working, what is going on in that disease state, and also how we can intervene at various points to make this go better for patients. And if you have a patient community that isn’t aware that research is an option, then you are really missing out.

SY: I think that clinical trials may not be the answer for every person at every stage of life, so I think we try to be careful. We, of course, are promoting participation in clinical trials, but at the same time I think the main part of this is that there is a tool for you if you are interested. JDRF talks a lot about clinical trials - we respond to news about clinical trials, we talk about how we’ve influenced clinical trials or therapies. […] When we talk about it, it’s nice to have that tool to say, “You could be a part of this.” […] There’s nothing wrong with educating people about the option and then telling them how they can find out more. We’ll tell people, “This is a great way to get a list of trials that you might be eligible for and then bring that to your clinician.” This is such a nice, clean list. You can say, “I matched to these four trials, what do you think about clinical trials?” This is empowering the patient. […] I can’t imagine why any organization wouldn’t promote or at least talk about clinical trials as a positive - that’s how you get therapies.

You have done a very good job of getting people interested. For people who are entering into this space, who have taken the leap and decided to discuss clinical trials as an option, what advice would you give for making the community aware of clinical trials? What advice do you have for engagement?

MH: We’ll take any opportunity to talk about it. We’ll work it into things that we are talking about. We talk about clinical trials a lot, and so it’s natural to add the piece about, “this is how you can participate and this is how you can do more.” […] I think if you don’t already have that kind of framework in which you talk about things […] it’s important to tell stories. When we first launched the tool, we talked to people about their experience to establish the need for something like this - that is really powerful.

SY: Every time someone goes out and speaks, if you have an organization where people are speaking about the science you are funding - especially if you are funding trials or you are talking about that - just couple the two. To me, it’s a really easy win to say, “We are doing this clinical research and, if you are interested in clinical research, this is where you can find trials for which you might be eligible.”

Any final thoughts?

SY: The one piece I think we haven’t put a lot of effort into, but we will, is Antidote Bridge, [a tool that helps researchers make their trial information patient-friendly]. I just think that the Bridge tool is so amazing. We’ve been working on the patient community side of things, but every time we have a workshop here, we show [researchers] the tool and they are excited because they are all struggling with recruitment. The other piece is I think that there are more opportunities to get [Match] out there. […] Where else can we plant this [search tool] and how can we engage the research community a little bit more. There’s a huge need, and it’s a selfish need on our part, but it’s…

MH: It’s selfish for the mission, so it’s for all of us.