Opening Doors to Research Participants: Making Scientific Conferences Accessible to the Public

Transcript

Sarah Walter Excerpt: And the research participants both really appreciated being able to hear firsthand the progress that's been made in Alzheimer's disease and related dementias, what we're learning. Being able to just hear it firsthand for themselves, hear how scientists talk about the work they're doing, really gave them an appreciation for how tough it is, all the challenges we're dealing with, but also they were encouraged. 

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters and to our special series where we're highlighting topics and speakers in the lead up to the AAIC, happening from July 31st to August 4th. My guest today is Ms. Sarah Walter, program administrator for the Alzheimer’s Clinical Trials Consortium and the Alzheimer's Therapeutic Research Institute at the University of Southern California. In May 2021, Sarah was an author of an article looking at the impacts of virtual scientific conferences on researcher and participant engagement. Focusing on the AAIC’s transition to a virtual conference format in 2020 in response to the pandemic, Sarah and her team found that virtual conferencing options lead to increased engagement from research participants and care partners who may not have been able to participate otherwise due to distance, time, cost, and other factors. She will be giving a talk about the impact of virtual scientific conferences during this year’s AAIC. Sarah Walter, welcome to Dementia Matters

Sarah Walter: Thanks Nate. It's really nice to be here.

Chin: Well, to begin, what specific changes were made as the AAIC piloted their virtual conference?

Walter: Well first, I just want to say that this idea really came from the research participants I was working with. They asked to come to conferences. Even before COVID, they asked to come. So Neelam Agarwal, who's been mentoring me on this project, invited a participant to come with her when AAIC was in Chicago. Then when CTAD – the Clinical Trials of Alzheimer's Disease – was in San Diego the following year, I went with a friend of mine who's also an advocate for research. We both had the same experience and the research participants both really appreciated being able to hear firsthand the progress that's been made in Alzheimer's disease and related dementias, what we're learning. Being able to just hear it firsthand for themselves, hear how scientists talk about the work they're doing, really gave them an appreciation for how tough it is, all the challenges we're dealing with, but also they were encouraged. They felt like they could see that there were scientists that were working really hard, that really knew what they were doing and that were committed to finding better therapies. So with their feedback, they really encouraged us to make it more broad, make it more accessible for bigger groups, and we didn't have funding for it. So when COVID happened and we were all stuck at home and we saw that our conferences were going to be virtual, the Alzheimer's Association actually made AAIC free in 2020. And I don't know if you were able to attend, Nate, but I learned later that 30,000 people registered for this conference. That's I think at least five times the number of people that were coming in person, even though this is the biggest scientific gathering. So because it was free, Neelam and I were talking and were like, all right let's do this. Let's just invite our participants. And we were really surprised at how many of them wanted to come. Of course there were some people that were a little concerned that the way that scientists talk isn't always accessible to everybody but I said, “All right, we know that but let's just try it. Let's see how it goes.” But we made sure to tell our participants that like, “Listen you're coming to a scientific conference. The purpose of this conference is really for these scientists to connect with each other so they're going to need to use their special language that they use.” You know, we speak in a language of acronyms as you all know and it can be hard to dial that back and make it more understandable for general audiences. So to answer your question, which was what changes were made, literally no changes were made. All we did was open the doors and we just tried to manage their expectations and make sure that they understood what they were getting into. And that and even scientists from other fields don't understand everything that, for example, a geneticist is talking about. Or when someone's talking about mouse models, yeah I do tend to tune out a little bit. I don't catch everything they're saying, but if you hang in there they'll get to that conclusion slide. Hopefully, if they're a good storyteller, they're going to explain to you why their science matters, what they're learning from their research, and what that's going to mean for clinical trials or future therapeutics. And that was the experience of the participants. They found they were very encouraged by it. They really enjoyed it. They appreciated being involved and they found a lot of hope.

Chin: That's a great story and I didn't know that. I think it speaks to – recently I've been hearing, “Don't let perfect be the enemy of progress”. 

Walter: Hundred percent, yeah.

Chin: And this fear of, “Oh this language is going to be too high level for someone not in the scientific field”. Well I don't know, let's wait and see. Frankly, people clearly enjoyed it. Speakers do need to be brought and be inclusive in their presentations. That was what happened because people clearly loved it. 30,000 people showed up to the 2020 conference. I think that's amazing. I also think, you know, we know how research can only happen because of participants, at least clinical research. We are always grateful for that, but there has to be some form of giveback and transparency, allowing people to see what is happening, what is their time going towards. That's what that virtual conference has allowed people to see.

Walter: Yes, exactly. One of my advisors that I've worked with now for a few years, she's been in the ADNI study, which is a longitudinal study, for 11 years. She has had five or six lumbar punctures, many pet scans, and a lot of blood. You know, memory tests, which for her are really the hardest part, but she hadn't heard back from the scientists what that information was being used for. So when she went to AAIC and she heard that the ADNI study was being used to design new trials, it was being used to validate biomarkers, that all of the work she's done by showing up every year for this study is really moving the field forward, she was just overwhelmed by it. That's always, for her, what she does when she comes to this conference. She looks for where people are sharing the ADNI, but that's not even always – a study like ADNI is so pervasive. It's had such an impact on the field that it's literally almost every talk, where they talk about how they used ADNI data to move their projects forward. So really inspiring stuff, yeah.

Chin: And that's a great story too and shows the importance of what people are doing when they volunteer. Now, what has been the most surprising finding as this conference has shifted to a virtual, and now hybrid, format?

Walter: Well, for me, I was really surprised at the variety of sessions that people were interested in. When we first did the pilot, we thought, “Okay for a full pilot, let's just give them full access to everything and just see what people do with it.” That to me was the most surprising thing. I think the other thing that I was really – that I find really encouraging because – just to share a little bit more about the project, we don't just let people go to the scientific conference and then don't offer any support. The program is set up to also include small group discussions so that people can come together and talk with other people like them who are research participants, maybe they're people with a diagnosis of MCI or dementia, or their caregivers. They're all people that are very interested in science, interested in dementia research, or have lived experience. These small group discussions have been a really important component of the program. Some of our participants actually didn't have time because they were actively caregiving and working to even go to the scientific conference, but they still went to the small group discussions because they love to hear what other people like them were getting out of these scientific conferences. So they were kind of getting it secondhand but still were showing up in the evenings to hear about it. So I think that that's an important thing to consider, if anybody listening to this podcast is thinking of ways of making science more accessible. What people really want when they join research studies – we hear this over and over – the relationship that they develop with the research team is a really important reason why they do research and why they stay in research. So inviting them to join a conference like this and then discuss with a local researcher what they're learning is, I think, a really important way of meeting the need that people have for that relationship.

Chin: That's an incredible opportunity. I'm fascinated to know what those conversations are like for people who have attended and then didn't and just wanted to get impressions, secondary impressions. Why is it important for research participants, particularly those living with disease, to be present at AAIC and other research conferences and hear about the research they are involved in?

Walter: Well, speaking from my own experience, I'm living and working in a pretty narrow space. I live and breathe Alzheimer's research, so aside from my interactions with my family that's what I'm doing. These individuals come to Alzheimer's disease – they didn't pick that journey. They're coming from other careers, from other areas of expertise. I have former engineers, I have former healthcare workers on our advisory board. They're bringing all of that lived experience with the disease and their former careers – all of the knowledge they've gathered through all of that – into these spaces and then asking questions about why we're doing the work we're doing the way we're doing it and have we thought about doing it differently. It's a wonderful way for researchers to get a much broader perspective. They're not just people with dementia, right? They're people with very rich stories and expansive backgrounds and they have a lot to offer all of us. So that's, I think, been the most important learning – and they do have ideas for how we can do research better if we ask them.

Chin: I love that answer, Sarah. What do you hope other scientific conferences and events will learn from this transition and your study's findings?

Walter: So I’ve thought about this. I think in Alzheimer's disease, we've been a little slower to be inclusive of research participants, people with the disease, and care partners in all of these spaces. In AIDS, in cancer, diabetes, and other diseases, they've been much more inclusive. I think we have a lot to learn there. There hasn't been a lot of work published on it and I think there's ways of doing it where we could be promoting those voices much more intentionally than we are doing now. One of the things I'm excited about this year at AAIC is the featured research session that I was able to put together with some colleagues. We are putting on the stage a panel of caregivers that are talking about their lived experience and they're telling us how we can do a better job of partnering with the people that we want to take part in our research studies. I think it's important for us to hear those voices and for those voices to be the center of our work. When you're working in a busy field like clinical trials, you can – and I'm speaking from experience here, I've worked in clinical trials for 20 years – you can spend years working your butt off on a clinical study and never actually talk to a research participant. So understanding why you do your work and why your work matters is, I think, the most important thing that we can get from listening to the voices of people that have this lived experience.

Chin: This session that you're talking about, is this the one that's going to be featured at 8 a.m. Pacific Time, Thursday August 4th?

Walter: Yes, so the title is, “What Does This Have To Do With Me?: Improving Accessibility and Relevancy of Dementia Research by Partnering with Research Participants.”

Chin: Wonderful, and I'm not sure if that is, inherently, a part of the free option for community members?

Walter: Well for our program, so general audiences can get access to the plenary sessions just by emailing the Alzheimer's Association. All that information is available on the AAIC website. I am running a small program, with the help of the Alzheimer's Association, that gives people full access to everything and it will include this program.

Chin: Wonderful, and actually one of our other speakers has said that if there's a particular featured research talk that people can email the Alzheimer's association and ask for that and it would possibly be made available.

Walter: Excellent. I'm glad to hear that.

Chin: Now, are there other means of engaging with care partners and research participants that the AAIC is looking to incorporate in the future? Are there new interactive elements perhaps that participants at this year's virtual conference may be able to engage in compared to last year?

Walter: I'm not aware of the AAIC platform doing anything at the high level to promote engagement for general audiences. I think they are making it available and I think that's a really important first step. I know that they’re holding – after the conference they're holding more general audience language sessions to really talk about all of the science that was reviewed at AAIC, so that should be really accessible. You should be able to access that through your local Alzheimer's Association chapter. There are going to be webinars. I just got an invite for one that's happening in August for our local chapter in San Diego, so that's happening. You know, I think we really need to hear from the participants what it is they want with these. I think that is the first step if you want to build meaningful partnerships. What I'm hearing from our participants is they really want the opportunity to engage with other participants like them and they also want the ability to meet other researchers. They want to build those relationships so we're trying to do that through this program that I have with these small group discussions. Beyond that, I think that's something that we'll have to ask the Alzheimer's Association to consider.

Chin: What talk or topic other than your own are you looking forward to hearing about at this year's AAIC?

Walter: Because I work in clinical trials, I'm always eager to hear about any results for any trials, even if those trials are negative because we do learn so much from every study once it's completed. So I'll be going to any talks. You know, the recent news coming from Roche about the preclinical study was really devastating, especially for the participants and their families I'm sure. So definitely if there is any data being presented, I'll be looking for that. I’m also – I’m really excited to hear the presentation from Emily Largent. I was a part of this working group so full disclosure. It's really a project that really comes from my heart too. So that talk is Tuesday at 8 a.m. It's called, “Participant First: How to Put Participants First When Trials End Early.” That's really coming out of the experience – it's really driven by participants' experience when a study ends early, learning that news from the news and not from your research team. Emily Largent put together a wonderful working group that includes people from industry and academics where we really came up with some practical solutions to really ensure that participants are supported throughout the whole process of research. There's recommendations there to improve communication even if your trial doesn't end early, right? So really answering those requests from our participants to really understand how did their participation make a difference, what learnings did scientists come away from the study with, and really preempting the kinds of questions that people have when the trial ends. So that'll be a wonderful talk. I'm looking forward to that.

Chin: Well and thank you for sharing that, for me and for our listeners. With that, Sarah, thank you for being on Dementia Matters.

Walter: Thank you Nate! It's wonderful to meet you.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.