Enhancing Brain Health with Data-Driven Solutions

ROBERT JOHNSON:
This is Public Health Review. I'm Robert Johnson. On this episode, how agencies leverage data to improve brain health.

MEGHAN FADEL:
The Healthy Brain Initiative Data for Action Project is a new nationwide effort to support the integration of data on brain health and on caregiving into public health planning efforts.

ELIZABETH CONKLIN:
Sometimes in Public Health we get really into the weeds of knowing the data and wanting to interpret it but how do we relay that to the public who have no concept?

JOHNSON:
Welcome to Public Health Review, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.

Today agencies learn how data related to brain health can help them educate audiences and inform planning approaches. Two guests are here to discuss the Healthy Brain Initiative Data for Action project. Elizabeth Conklin is a Health Program Supervisor in the Heart, Brain, and Diabetes Health Unit at the Connecticut Health Department.

She's along later to tell us about her state's involvement with the project. But first we hear from Megan Fadel with the Alzheimer's Association. Her organization partners with CDC to help agencies make better use of their brain health data.

FADEL:
The main focus of the project, it really builds a cohort, or a community of practice you could call it, of state health departments, along with their partners, and they all work together to use data to drive action.

And I'll also add that this particular project, Data for Action, is just one part of our organization. Larger healthy brain initiative, which is a longstanding relationship between the CDC and the Alzheimer's Association and now other national partners as well.

JOHNSON:
Can you give us a definition of data for action?

Maybe tell us just a little bit more about what is involved here.

FADEL:
That's a great question. So we run one cohort annually, and we're in our second cohort this year. We have a great group of states this year, so that includes Wyoming, New Mexico, Ohio, and North Dakota, and they're doing amazing work, and we're actually getting close to launching another cohort soon, so we're looking forward to another round of building cross agency collaboration action as well.

JOHNSON:
If you are in the cohort, what are you doing?

FADEL:
So there's a few key objectives for states that participate in this cohort. In fact, there's three specific objectives. The first is conducting a data analysis related to brain health, dementia, or caregiving. The second is producing a tool for sharing that data.

FADEL:
And the third is getting those results in front of key governmental decision makers to inform and to help make those very important and very real connections between brain health and the other, uh, chronic conditions and larger issues that we face in our communities today. This includes things like health equity, for example, and really being able to draw that bridge between Alzheimer's disease and what's happening and some of those other large state priorities.

JOHNSON:
Can you tell us why data is important in this area of public health?

FADEL:
The reason being is that population level data is such an important driver of all public health efforts and knowing that the Alzheimer's Association and the CDC have been working together for around two decades to ensure that there is available public health data on cognitive decline and caregiving, and that it is used and so this project is really an evolution of that work and helps support states to use the data to inform decision makers and also integrate it into state strategic plans. So, these include things like state Alzheimer's disease plans, but also state health improvement plans and state plans on aging. 

JOHNSON:
Is it your goal to get all of the states and territories involved in this eventually?

FADEL:
We would love that, and one of our current priorities is really reaching states that have not historically been able to tackle Alzheimer's disease and dementia. So there's a lot of states that have made great strides in this area, and a lot of states that are now funded through the BOLD Infrastructure for Alzheimer's Act.

And one of our priorities is also making sure that some of those states who may not have that federal funding to support them, or may not have had the resources, or supports they needed to take action in this area that we help them, you know, plant those seeds. And oftentimes what that means is starting with the data.

What does this issue look like in our state? How is it impacting our communities? And how can we start to think about how this fits into what we do as an organization?

JOHNSON:
There's another program that's involved in this conversation. It's the Behavioral Risk Factor Surveillance System. Some of us may have heard it referred to as BRFSS.

Can you tell us what it is and how it plays into this project?

FADEL:
The BRFSS, or Behavioral Risk Factor Surveillance System, is a large-scale population level survey that's developed by the CDC and then implemented in states every year and states have the option to include a set of questions on cognitive decline and a set of questions on caregiving.

So, in collaboration with our colleagues across the country and our collaborators in the state health departments, we've been able to grow the use of those modules from just a handful of states in the early 2000s to now every state running them. Many on a consistent basis every other year or more. So, this means that they're able to now integrate it more into their regular surveillance efforts in the way that they do with other chronic conditions historically.

Thinking about things like cancer or diabetes, we're just now starting to see that happening more consistently with cognitive decline and caregiving as well. So, we're really moving into a new stage of this work and I think a lot of that is thanks to the federal funding we've been able to receive from the CDC to help ensure that states have the support and are able to take action in this area as well.

JOHNSON:
Is that the data that's being used in the data for action work?

FADEL:
This has been a key and core data set for a lot of the work that the states have produced. And not surprisingly, because it is one of the really important, not the only, but one of the really important data sets in this field. So, it's from this data, for example, that we know that roughly 10 percent of people 45 and older in the United States report changes in their thinking or memory.

And this is the figure that really strikes me. Over half of them have not talked to a health care provider about it. That always hits me every time. Over half of them have not talked to a health care provider about their concerns and their symptoms. So, we know from this, and other data sources as well, but this helps tell that picture about how there are barriers to having that conversation and getting that diagnosis with providers.

And this ends up meaning delays in access to treatments and supports and then thinking about caregiving. You know, when we think about understanding just how prevalent caregiving is, it's from this data source that we know that approximately one in five people provide care for someone living with dementia. So, this is a substantial portion of our population as a nation and in our local communities, and this is a population who deserves support too.

JOHNSON:
So does everyone have the data they need, or is that still a work in progress?

FADEL:
I think at this point, there's a lot of data out there, and it's a matter of ensuring states are equipped to be able to use that data to really translate it into a form that makes sense and that really speaks to the folks who are making the decisions and the broader community as well.

JOHNSON:
This really sounds like it's a matter of teaching states how to use the data. Is that right?

FADEL:
States have a lot of capacity and you know, amazing, oftentimes amazing epidemiology teams who are often working with this data on a day to day basis. So, surveillance efforts are a common and core function of a lot of health department work already when it comes to other chronic conditions.

That hasn't always been the case when it comes to cognitive decline, but that's a part of what we're hoping to change is to now just bring what they already know how to do and apply it to this field to make sure that this is, it’s treated and, considered a part of our broader chronic disease efforts, our broader aging efforts, and addressed as the major public health issue that it is.

JOHNSON:
Thinking about the project and what has been accomplished so far, what do you hope for it? What's the end game?

FADEL:
Ultimately, I think that one thing that we've learned is that this model works. I think that there's power in collective action and bringing states together from all different types of communities in our nation, but all focused around this specific topic and in cross collaboration across state agencies on caregiving and dementia.

So, there's just been some amazing conversations that we've had with some of the states who have participated, who talked about how they had never before brought together. They're folks who worked on chronic disease. They're folks who worked in their Department of Aging. They're health officials who worked on just a variety of different areas within the Health Department, health improvement planning, and they had never come to the table together before to really have serious conversations about what data exists, what it means, and how they can use that to inform their next steps.

JOHNSON:
Do you have any success stories or moments that you could share here on the podcast?

FADEL:
We've had a few states produce some really great products and infographics and fact sheets that have helped them tell the story about the impact caregiving has on their community. There's another state that looked at social vulnerability index and really looked at some of the social needs in relationship to this issue. There's another state that took a deep dive into risk factors for brain health and used this as a way to communicate that to the broader public in terms of what they can do to support their own brain health. So I think there's some really great examples of the ways they're thinking about how this can really change people's thinking and change the context in terms of how the broader public sees this issue as a priority and how we can all work together to ensure that we are taking action.

JOHNSON:
What are the takeaways so far?

FADEL:
I think one big takeaway for me is just how powerful it is to have a cohort of different states from across the country. I think that collective action and cross agency collaboration is an amazing thing when you can do it right. And I think that I just have a lot of hope for where we're headed when it comes to public health and dementia.

I think that there's been so much transformation. If you just look back even 10, 20 years, this field has totally changed and the way that more and more work on dementia is happening in health departments in so many states has just really been mind-blowing and just so exciting and gives me hope for the ways we all can make more of an impact when it comes to ensuring people have the supports they need, that they have access to treatment, and that we're doing what we can to reduce the risk of dementia at all stages of the life course.

JOHNSON:
What's involved if an agency wants to be part of a cohort?

FADEL:
So, for this next cohort, we're really specifically focusing on states that do not currently have federal funding to support their work on dementia and part of the reason for that is because we really want to grow this effort everywhere. I think one of the transformative things that happened over the past number of years was the BOLD Infrastructure for Alzheimer's Act this has funded.

We now have over 40 different programs and health departments across the country that are federally funded through the CDC because of that specific legislation so that's a really powerful thing. That didn't exist before. But there's still a lot more work that needs to happen. And so we're really looking to not only elevate the existing work, but also to really reach these states that may be at a more core phase of growing those seeds that have been planted.

You know, they're all doing some sort of work on dementia, but really helping build out what they're capable of and to kind of bring the whole nation together, you know, as a whole to start growing efforts in every region of our country.

JOHNSON:
Ultimately, it sounds like what you're trying to do then is to make sure whether you get funding or not, the resources, the training, the work is available to help you, to help states get going on some of this, to do it the way it needs to be done.

FADEL:
That's exactly right. The states that we've worked with have really found that they've been able to dedicate some of their existing staff and resources to be able to focus on this topic, and they've been really excited, I think, to be a part of it.

I think in many ways, dementia is really at the forefront of public health. This is an evolving area. It's really transformative in terms of how we're tackling it and what we're all learning collectively as we move forward. And so, I think they've seen the value and what they've expressed to us is that they've really seen the value in both the education that they receive as a part of the initiative.

So a piece of it is a learning component. They really have the opportunity to gain the knowledge and confidence to be able to tackle this in a new way for their state.

JOHNSON:
Connecticut was part of the first data for action cohort when the effort launched in early 2023. Elizabeth Conklin is with the state's health department. She says the partnership made sense.

CONKLIN:
We use the CDC Healthy Brain Initiative Roadmap to guide a lot of our work and one of our partners on the coalition is the Connecticut Alzheimer's Association.

Several members. They're a very strong partner with us and they reached out to us and mentioned this Data for Action opportunity, which is to work on creating some resources, to help utilize the data that we have available and make sure it's publicly available, some small graphic design assistance as well.

It was just meant to be a short-term project, so we have a great partnership with them. We wanted to take advantage and so we convened some of our staff at DP to work on the BOLD grant and to look at what we had for our data. Kind of step back and say, okay, if we want to make some fact sheets and some general starting information on brain health, where would we start?

JOHNSON:
And how did you answer that question?

CONKLIN:
We convened some of our staff, which include our epidemiologist, our chronic disease director, myself, and we also brought in one of the epidemiologists from the behavioral risk factor surveillance system. We call it BRFSS, it's a national CDC surveillance that has been going on for many years. So we wanted to look at that data.

We also had other data to consider, which is our emergency department and hospital discharge data, but we decided to look at the BRFSS data and utilize that to create some fact sheets on brain health. So that was how it came about and so these were regular meetings that were convened for the data for action and helped us really look through what is your data?

What do you want to do with the data? Who do you want your audience to be? How much available data do you have? Is it relevant? Do people know what subjective cognitive decline means? So, we had to step back and say, let's bring this down a level. If a teenager is looking at this, or on our website, or a child who's doing a research project in sixth grade wants to understand, do they know what subjective cognitive decline is?

So, we really walked it back a little. We also looked at the visuals. Is it visually appealing? Is there too much text? You know, sometimes in public health we get really into the weeds of knowing the data and wanting to interpret it, but how do we relay that to the public who have no concept?

JOHNSON:
It sounds like the invitation helped clarify some of the team's thinking and really helped you decide where you wanted to go.

CONKLIN:
Yes, we actually had a lot of data and we had to like kind of focus in and narrow down and that was with the help of the Data for Action meetings that were, I believe, they were every other month and so they guided us, they provided some valuable input on, you know, the process and then we met internally to kind of like, take it to the next level.

So it was a very helpful project to be part of the Data for Action group. I think there was about six or seven state health departments that participated and it's also helpful to hear their feedback and what they're using the data for, what they were going to create. Some created, I think, a booklet. Some created other briefs. We went the fact sheet route, but it's always helpful to hear what other health departments are doing in making it a meaningful document that can be used for the public.

JOHNSON:
How do you plan to use the tools that you've created to help move this issue along in Connecticut?

CONKLIN:
We have a brain health website on our DPH page that has a lot of our resources. We just started building it in the last year. It has our state plan. It also has information about our coalition. We created a video last year called It's All Connected, which was a brain health primary prevention that's available to the public. We share that on our social media. We had a paid campaign last year.

CONKLIN:
And so, the fact sheets that we created are also on there. So, we're building sort of a library of resources that could be used for the public. We share it with our coalition. We share it through DPH social media. We print some of it and use it for health fairs and various, you know, outreach activities. So, it's available for the public.

We share it as much as we can. And it's a starting point so we can hope to continue to keep building on resources that are good for the general public on using data, sharing it, why it's important.

JOHNSON:
Zooming out a little bit on the experience itself, what did you learn? What are some of your takeaways?

CONKLIN:
Well, I would say that it's definitely harder to relay data in a simple way than people think.

Public health professionals are wonderful at data and we often know the resources and then we know the material, we know the risk factors, but then putting that into a public document for, as I said, all age groups to understand and make the general public be able to understand it is really critical.

And it takes time to step back and be methodical and thoughtful. So, some takeaways that we said we definitely narrow down the number of data that we wanted to include on the fact sheet. Keep it simple, three to four main points of the data. Bringing a team together was really important, of like people from complementary disciplines, as I said, our epidemiologist, our chronic disease director, myself, people with different backgrounds to give the point of view.

Make your message simple, of easy literacy level. Make sure you aren't duplicating and reinventing something that's already out there. It's reasonable. So that was another takeaway. Making sure your final product is available in various formats and share it broadly. You know, you, we often think, well, we, it's on our website.

That's good enough. You have to keep sharing. You have to keep reminding people, put it on your social media, share it with your partners, do it as many times as you can to get the message out there. And, you know, make the material available so that it's friendly and engaging.

JOHNSON:
Were there any challenges or obstacles that you had to work through?

CONKLIN:
We had challenges taking so much data that we wanted to share, we had so much great stuff, but it was more than we could put on a fact sheet. We didn't want to clutter it and make it overwhelming. So, really trying to say, what is it we want the public to know? What would be the two or three key pieces of the data?

What will resonate with the public? People that they'll say, “Oh, that really means something to me”. Oh, versus just throwing data on a fact sheet because we have it available. So really assessing what is the most impactful pieces to share with the public was helpful for us. And it took time to really chip away at what was the most important to share and what would be most helpful and impactful for the public to know.

JOHNSON:
From your vantage point, was it worth it?

CONKLIN:
Absolutely. Absolutely. We really enjoyed the meetings that we had with the Data for Action team and the other states coming together, hearing their input, their processes, and learning like the reflective stages of trying to look at what you have for data and decipher what is most critical to share.

That's important and then the second level of your internal discussions of like, honing in and narrowing it down. So, absolutely.

JOHNSON:
Thank you for listening to Public Health Review. If you like the podcast, please share this episode with your colleagues on social media. And if you have comments or questions, we'd like to hear from you. Email us at PR at ASTHO. org. That email address again, P-R at A-S-T-H-O dot org. You can also follow us using the follow button on your favorite podcast player.

JOHNSON:
And a reminder, stay up to date on everything happening at ASTHO by tuning in every morning for Public Health Review Morning Edition. We cover news like this every day. Look for the link in the show notes and let us know what you think. This podcast is a production of the Association of State and Territorial Health Officials.

For Public Health Review, I'm Robert Johnson. Be well.