Promoting Open Science and Community Engagement with the National Institute on Aging

Transcript

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. Today, we’re concluding our series on the National Strategy for Alzheimer’s Disease Data and Research with the National Alzheimer’s Coordinating Center and the National Institute on Aging. I’m joined by Dr. Cerise Elliott, the program director in the division of neuroscience at the National Institute on Aging where she oversees funded grants focused on dementia research, study participant recruitment and retention, and health disparities in Alzheimer’s disease. I encourage listeners to tune into her previous episode of Dementia Matters from 2018 on national priorities for dementia and health disparities research. Dr. Elliott joined me live at the Spring ADRC Meeting to discuss the NIA’s role in Alzheimer’s disease research and her key takeaways from the spring conference. Welcome back to Dementia Matters, Dr. Cerise Elliott.

(Music Interlude)

Dr. Nathaniel Chin: Dr. Elliott, welcome back to Dementia Matters. Great to have you back on.

Dr. Cerise Elliott: Thank you, Nate. It’s always a pleasure to be a part of Dementia Matters.

Chin: And it’s nice to see you here in person at the Spring ADRC meeting.

Elliott: It’s been a long time, yes. Thank you.

Chin: As a representative of the NIA, what is the NIA’s role in the ADRC Spring Meeting?

Elliott: Yeah. You know, the National Institute on Aging is the sponsor of all the Alzheimer’s disease research centers. Really, each season – this is the directors’ meeting. All the directors, they elect representatives to represent them. The three have a committee and they make up the meeting, and this is their session.

Chin: What are the key themes that you took away from this spring meeting?

Elliott: I mean the key themes are – mostly when we come together, it’s informational. It’s to come together and learn about opportunities to collaborate and still leverage the 33 centers together with the opportunities that they have. Over the years we’ve been given, by Congress, increased funding. We have, at NIA and as a program staff member, the responsibility to provide as much resources as possible to the centers in order for them to do their responsibilities. Also, we are working with the directors and the members of the centers to advance science, and to work on the next best thing, and to leverage the resources that we provide them.

Chin: It was mentioned at this conference that there is an increase in funding in Alzheimer’s disease, which is always appreciated and that’s a priority. What does that mean for the field? What new directions do you think the ADCs are going to go or add to with this extra funding?

Elliott: Yeah. I think the increased funding, overall, has increased our responsibility to work all together to really advance the field of Alzheimer’s disease research in a number of ways. One of the priorities we have at NIA is to increase the diversity of the participants that are participating in the centers. You know, we – an important part of the center is the outreach, recruitment, and engagement core, which builds local communities ties to each of the communities to serve the local population, to educate the local population. We’re eager to provide additional resources to help have additional recruitment specialists and to have additional community ties. We want them to totally be part and every community member to know that they exist.

Chin: The NIA also has tools that researchers at the ADRCs can use. I’m thinking about OutreachPro and other systems to help people actually get into the community. Will there be more things like that, do you think, with the future – the next five years?

Elliott: I think there are a number of avenues to take. Me personally, I would like to have additional community members be part of the centers. I like when certain centers can go into local communities and provide an excellent service and build, naturally, champions of the centers. The people who are champions of the centers go out to the community and be part of recruiting additional friends by word of mouth. That’s my favorite way of recruitment.

Chin: Well, and at this conference it was brought up that we have community participant boards. We have external advisory boards, usually made up of scientists. Some centers actually are starting to combine these, actually having community members on the external advisory boards. What role do you see participants, former participants, or just community members when it comes to the actual scientific process?

Elliott: Yeah. I think what was shared at the meeting was the idea that community members don’t have to be tied to just recruitment or just participant. That as they are players within the centers, they also have the ability to know about the science more than what people want to give credit for. I think there’s an educational component in allowing the community members to become active members of the center.

Chin: One of the other topics that’s come up a lot is this need to improve data sharing among centers. Each site is doing pretty incredible work, but it can be unique and so they need to share that information with other sites as well as the community. Then this idea of open science practices – what does that mean and what should community members know that NACC, the ADRCs, and the NIA are trying to promote?

Elliott: What we’re trying to do at NACC – you know, the National Alzheimer’s Coordinating Center – is to provide a location in which we have all the data that these 33 centers are producing. We want the data to be findable and accessible to all researchers and not just the members of the 33 centers. At NIH as a whole, we believe in open science, in building infrastructures that allow really incredible data science to occur. And what is needed is a structured approach to building this infrastructure and building data pipelines in which we get all this data that the centers are producing together. It’s a long process and it’s also a complicated process, but as a sponsor of this research we really feel that that’s a number one priority.

Chin: And a lot of great presentations happened over the past two days. I know that there will be a fall meeting and that this happens every year. For you, what are you walking away with? What will you take back to the NIA? What do you think are the next steps?

Elliott: I mean, what I really enjoy coming twice a year with the members of the centers is the opportunity to share ideas, to understand people’s interests and limitations, the challenges that they’re encountering. It gives them the opportunity to voice their praises and their concerns in having this open dialogue with the centers collectively, I think, is very, very helpful twice a year. It also allows us to work on additional goals and communicate together what we want to do for the imaging of participants, what we want to do for blood biomarkers of participants, what we want to do in the digital biomarker range. There are a lot of possible activities and possible advancements that we can make and each meeting is kind of our working session in order to plan how we’re going to work out in the next six to eight months before we meet again in person.

Chin: Well, I look forward to the fall ADC. Thank you, Dr. Cerise Elliott, for joining us again on Dementia Matters to go over the spring one. I look forward to being able to speak with you again. 

Elliott: Thank you, Nate. I really appreciate Dementia Matters being here and learning about the spring meeting and giving the opportunity to your listeners to understand what we do at the NIA and what we do at the ADRCs, and at the National Alzheimer’s Coordinating Center.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. 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 at the University of Wisconsin--Madison. 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 Amy Lambright Murphy 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, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.