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Bonus Episode: Alzheimer’s Association

Transcript

Hey Everyone!  

Welcome to a supplementary bonus episode of “The Problem.” These episodes let us drill down into specific examples of organizations or groups that are changing how life with Alzheimer’s can be lived.

I’m your host, Phil Lofton.

[Theme]

It’s hard to talk about Alzheimer’s disease and related policy without mentioning the Alzheimer’s Association.

Founded in 1980 by Jerome Sloan and several family support groups, the Alzheimer’s Association has been an invaluable resource for families living with Alzheimer’s.

It’s raised money for research through events like the walk to end Alzheimer’s, supplied resources to countless patients and caregivers, and raised overall awareness of the disease for nearly 40 years.

Nationally, the association now has 78 chapters. It has spun off a political impact arm, the Alzheimer’s Impact Movement, and it has helped raise the annual NIH funding for Alzheimer’s research to nearly $2 billion through successful lobbying.

To learn more about some of the policy advancements that we’ve seen in Indiana for Alzheimer’s, I spoke to Natalie Sutton, the chapter executive of the Indiana Chapter of the Alzheimer’s Association.

Natalie Sutton:
There are 5.8 million Americans living with Alzheimer’s disease now and about 16 million Americans who are providing unpaid care for someone with the disease in Indiana. That translates to about 110,000 Hoosiers who are living with the disease and about 338,000 Hoosier caregivers. So there’s already a big impact on people. Alzheimer’s disease is the most expensive disease in America as well. And that those numbers have the expense, don’t even calculate the value of the unpaid care that people are providing. So, uh, this disease unfortunately can really drain families and those affected.

Phil Lofton:
Why is Alzheimer’s the most expensive disease? What is it about Alzheimer’s disease that makes it so uniquely costly?

Natalie Sutton:
You know, unfortunately, I think a big driver of the cost is in the later stages of the disease and is in long-term care settings. So when we think about how much we spend, unfortunately we’re spending a lot of those funds toward the end of the disease spectrum. And at the Alzheimer’s Association, we think one thing that would be really great is to invest more in Alzheimer’s and dementia as a public health issue and focus more on how we can improve diagnosis and help people to live better in their homes and communities with the disease. We think that that would help to reduce the cost of the disease for sure.

Phil Lofton:
So how are we going to see this trend of Alzheimer’s prevalence, Alzheimer’s incidence, and caregiver population? How are we gonna see the cost increase over the next several decades?

Natalie Sutton:
We’re very ambitious at the Alzheimer’s Association, so we set big goals and we hold ourselves to the highest standards in terms of trying to achieve those goals. We were founded as an organization with really two aims: one, to advance research, to put an end to the disease, but at the same time, recognizing that research takes time and people are hurting now, providing care and support for those living with the disease. So when we boil those really big planks of our mission down to our local community in our local chapter of the association, we have six pillars of our strategic plan. One that we spend a lot of time on every day is care and support for those affected. Our big goal there is really to reach more people. So we reach just under about 6,000 unduplicated constituents in Indiana year, which sounds like a lot at first, but when you realize that 110,000 Hoosiers are living with this disease, we know we’re not doing enough.

Phil Lofton:
Those Hoosiers, though, have unique opportunities, Natalie says, due to local resources and opportunities in research.

Natalie Sutton:
Indiana is a great place to be for Alzheimer’s research right now, and I think there are a lot of exciting things happening at the Indiana University School of Medicine, but also in our life sciences industry in Indiana and in the pharmaceutical industry. So, there is a lot of great research work happening. One of the things we’re most excited about that our chapter has become very involved with is the longitudinal early-onset Alzheimer’s disease study.

So really, you know, a long-term observational study that we’ll look at people who have been diagnosed with Alzheimer’s or dementia prior to the age of 65. And I think it’s really interesting to think about what we can learn from those patients without all of the complications of aging that we see in a more traditional onset of the disease, as well as the fact that families affected by early onset disease are experiencing this challenge at a different time in their lives, when they’re supposed to be still putting their kids through college or working actively.

And so it’s an especially devastating form of the disease and we’ve been very excited at the greater Indiana chapter to get involved with that study and support some of the genetic analysis that was not going to be funded by the NIH.

Phil Lofton:
We’ll learn more later this season about that study.

The Alzheimer’s association has also had political impact over the last several decades. I spoke with Jason Barrett, the policy director of the Greater Indiana chapter, to learn more. 

Jason Barrett:
So part of my role with the association is to work at the federal and the state level to help promote the adoption of policies that are providing caregiver support and increasing the care and support for those living with the disease — increasing research funding. So, just quickly, federally we’ve had a lot of very large successes advocating at the federal level. About a decade ago, we were instrumental in helping to pass the bill that created the first ever national plan to address Alzheimer’s disease. Goal one of that plan was to have a medical intervention in place by the year 2025. And we’ve used that goal as well as a few other things to help us with advocating for additional research funding for Alzheimer’s disease.

We’ve been hugely successful on this front. We’ve been able to quintuple — that’s five times — the amount of NIH funding over the past six years. So about six years ago, we were at $450 million a year. We’re currently at 2.3 billion a year and that number is likely — hopefully, fingers crossed — to increase further with the budget being passed later this year, the fiscal budget. Now we’re working with Congress and we have some pretty good first indicators that that money is going to be increased even more. So federally speaking, we have a lot of successes. And one bill that we passed last year was our priority bill that plays very well into what we’re trying to do at the state level as well.  

That bill, it was called the Building Our Largest Dementia, or BOLD, Infrastructure for Alzheimer’s Act. And it will, or once it’s funded properly, it will create Alzheimer’s centers of excellence across the country where these places can be designated as an Alzheimer’s center of excellence. And they’ll receive funding from CDC to promote awareness of the disease, provide caregiver support, help with that early detection and diagnosis, which is key for caregiver support and making sure that medical plans are in place and also collecting data that can help to promote further policies. So these are some of the things that we’ve been very successful at at the federal level.

Phil Lofton:
If you’re in need in Central Indiana, there are plenty of resources offered by the Alzheimer’s Association, both for patients and caregivers.

Natalie Sutton:
The greater Indiana chapter runs 65 support groups throughout the state. We really want people to know that they’re not alone, right? This is a big issue, but it’s also affecting a lot of families and there’s power in coming together, especially for those caregivers to talk about what they’re experiencing. And to provide that mutual support for each other.

We have a 24/7 helpline at the Alzheimer’s Association, an incredible resource, because it’s available 24/7. The issues and challenges of this disease don’t neatly present themselves during business hours. So giving caregivers, what really some of them have called a lifeline, being able to call, you know, at two in the morning or over the holidays when you’re a caregiver, experiencing a challenge and have that compassionate ear as well as gain information and sometimes some tools or strategies that may help you through a challenging situation. So those are just a couple of examples of the care and support services that we are really happy to provide for Hoosiers.

Phil Lofton:
Join us next week for our regular episode, where we’ll learn about a clinical model that can improve quality of life and health for both caregivers and patients by putting team-based care at the forefront, all while reducing costs for the healthcare system.

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Fungus Amongus  

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at regenstrief.org/theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

Bonus Materials

Learn more about the Alzheimer’s Association, as well as the resources they offer caregivers and patients, and discover more facts about Alzheimer’s at https://alz.org/

Learn more about Alzheimer’s advocacy and public policy at https://alzimpact.org/

 

Episode 12: The Opioid Crisis

Take a look back at our first season as we recap what we’ve learned about the opioid crisis. It’s the first season finale of The Problem!

Transcript

Phil Lofton

It starts with a plant.

The opium poppy, which goes by the name of the breadseed poppy more often these days, is a greyish greenish plant, about a yard tall.

This plant has been with us for as long as we’ve been going as a species, and over the millennia, we’ve made the fruit of the poppy stronger and stronger, bringing opiates and opioids into the world.

From heroin to fentanyl, our medicines grew into more powerful weapons in the battle on pain.

Around thirty years ago, that battle became an outright war, as doctors declared pain a fifth vital sign – something to be eliminated and conquered outright in the course of clinical practice.

We’ll never know if that declaration to destroy pain, in a vacuum, would have led to the opioid crisis.

How could we? In a society, nothing – big or small – occurs in a vacuum.

The fifth vital sign movement was joined by a letter to the editors of the New England Journal of Medicine by a physician named Hershel Jick, whose study on the effects of opioids in inpatient settings was misinterpreted and used to justify the proliferation of opioids.

It was joined by the collapse of manufacturing jobs. It was joined by direct marketing, and it was joined by the great recession.

It wasn’t one cause that led to the thousands of deaths we’ve seen in the opioid crisis.

A catastrophic failure of multiple industries and policies piled up within the span of a few decades, and an awful convergence of commerce, culture and prescriptions led to something that would take the efforts of professionals from a wide variety of fields to even begin to untangle.

Welcome to our first season finale.

I’m your host, Phil Lofton.

Over the season, we’ve looked at so many different disciplines and institutions’ perspectives on the opioid crisis – how they talk about it, how they fight it, and how they think about it.

 

We could focus on discussing the diversity of approaches presented by our experts, but I think the previous episodes did a bang-up job of that already.

Instead, I want to focus on the commonalities – those little threads that leap out from individual episodes and show how these disciplines come together to fight the crisis.

This episode, we’ll talk about the history of the crisis, how we’ve learned to improve care, reduce harm, and why fighting the stigma associated with substance use disorder may be one of the most important steps we can take.

One of the biggest things that we’ve learned this season is how the crisis began.

Here’s a clip from our talk with Kurt Kroenke, the legendary symptoms researcher, from back in episode 2.

Kurt Kroenke

I’d say there’s been a couple waves. So when I first started out, pain was always felt to be an indicator of something else. Something specific. As I mentioned earlier, there’s this disease model. We think everything crosses back to a disease, but there’s a lot of pain that’s mainly a symptom somewhere in the body and we are testing doesn’t help us, you know, MRIs, blood tests and so forth. So then a little over 25 years ago, the early two thousands, there was a movement to represent, to recognize pain as an entity onto itself and a more humane approach to pain. So there was a big push to recognize pain, better treat pain, look at pain as any other disease because it causes a lot of suffering. So there was a big push to screen for pain, treat pain. And along with that came the issue of using more opiates.

 Phil Lofton

Andy Chambers, the Addiction Psychiatrist that you heard from in our fifth episode, also had some thoughts about the origins of the crisis – especially how it related to mental and behavioral health.

Andy Chambers

It kind of began with deinstitutionalization in the sixties and seventies closing a state hospitals and um, at the same time you have the war on drugs, which was really of a political and cultural movement in the United States to decide we’re going to address the drug problem through criminalization. So think of those two things happening at the same time, right? The, the, the slow motion, sort of degradation of behavioral health care while criminalizing drug addiction. And no one knew that mental illness and drug addiction are biologically interconnected diseases of the brain.

So what you end up doing now is beginning to criminalize mental illness itself.

Phil Lofton

A lot of our guests have had some ideas about how we can use the lessons from this crisis to provide better care to folks experiencing addiction. Chris Harle, one of our informatics experts from episode 6, talked about changing patients’ electronic medical records to provide the most relevant information to doctors all in one place.

Chris Harle

What are all the things we’ve tried to treat them with, but having to work. What are the things we’ve tried that did work, what are they currently on and what are the risk factors and what are the doses of their medications? Are these moderate risk or high risk doses of opioids that we need to cut back on? We need all of that current and historical information in a single place and organized in a way that’s a cognitively pleasing. The way that they sort of fits with the way their brain works and it’s not how information is typically presented in the EHR. It’s all over the place and it makes it hard

Phil Lofton

During our conversation with Jim McClelland, Indiana’s Drug Czar, he applauded local efforts by Indianapolis’ safety net health system, Eskenazi Health, to integrate mental health with addiction care, to better care for the whole person.

Jim McClelland

The surgeon general issued a report earlier this year that indicated that about 45% of people with a mental illness diagnosis also have a substance use disorder. Although only about 51% are getting treatment for either, and only a small minority are getting treatment for both and they’re connected with each other. Eskenazi has done some really interesting work that was published not too long ago where they, at their federally qualified health centers, they have integrated primary care and behavioral health, including a treatment for addiction and mental illnesses and augmented those services with nonmedical services, that help deal with some of the social and behavioral problems that individuals are facing. And they found that that combination significantly reduced future hospitalizations and visits to emergency departments. So it’s a way to save money and also improve outcomes.

 Phil Lofton

Earlier in our season, we interviewed two people at the forefront of this new care model, Author of the 2 by 4 model, Andy Chambers and Eskenazi Midtown CEO Ashley Overley.

Andy Chambers

There’s no reason we can’t move to this integration within behavioral health where patients with basically any major addiction in any major mental illness can get, can walk into a building and get all that treated in whatever combination that got it without going somewhere else, without needing to do that. And if you do that, the care is going to be better and have more effective, better outcomes.

The addiction psychiatry group is fairly important. Keystone to this. But you know, you want all the professionals on the team in this kind of clinic to be comfortable and competent and in fact expert at both mental illness and addiction. So you have this professional group. It’s a team. What happens is any combination, the patient presents with PTSD and nicotine addiction, alcohol, bipolar disorder, Nicotine, OCD, schizoaffective disorder, any of these combinations, they come in the door and that same team can do it all.

Ashley Overley

There continues to be just a real stigma within the community about not just mental health but particularly addiction in general. And so I think it’s important for people to realize that the treatments that we have to offer both medication and psychotherapy really do go hand in hand in, do help people reach long-term goals of recovery and healthy functioning in society.

There’s no, there’s no need to be afraid of those kind of interventions and there’s no need to marginalize them. We really should be embracing both the medication assisted treatment and even harm reduction strategies like needle exchanges because these are tools that help move people toward a healthier lifestyle and a healthy recovery.

Phil Lofton

Over the season, we had a few guests mention something called harm reduction. What that means is reducing the impact or harms that drug use may inflict on a given person. Needle exchange programs, which are often called syringe services now, are a harm reduction tool because they reduce the likelihood of contracting hepatitis C or HIV from sharing dirty needles.

 

Joan Duwve talked to us about syringe services back in episode 9, and how they can not just reduce harm for patients, but ready them for recovery.

 Joan Duwve

So syringe services programs. Really it’s how we like to describe them because they do so much more than give people needles and I think when we call them needle exchange programs, we really start focusing on the needle and on the one to one, so we do have laws that, that sort of prevent that one to one exchange. But if we focus on the syringe services program, all the services that are provided by these harm reduction programs, I think we start to see the benefits in terms of humanizing individuals, providing them access to care, meeting them where they are, and walking with them through their journey until they’re ready to get into recovery.

Keeping them alive, keeping them well, not only is beneficial to the individual, but it’s beneficial to the society as a whole. And that happens in so many ways, right? So even the simple fact of giving, giving people clean needles, we all understand that that prevents ongoing transmission of HIV and Hepatitis C. It also prevents infectious diseases, abscesses or endocarditis or heart valve infections. And what that does is it keeps levels of those infections, lower in communities. And it’s going to protect other people in the community, but there’s also a huge economic benefit to a community to keep people healthy every time you have somebody with HIV in a community that means that there’s a lifetime of treatment costs that go along with that. And the same thing with Hepatitis C, it’s an expensive disease to treat. Hospitalization for heart valve infections is really costly.

So we provide social benefit to the community. We provide benefit to the individual and we provide this huge economic benefit as well. But certain services programs do much more than that. So we’re already at a, at a positive, um, balanced socially and economically and in certain services programs. Actually the immunized individuals. So for example, we have a hepatitis a outbreak now in Indiana, in that hepatitis a outbreak has particularly impacted individuals who use drugs and individuals who are homeless. In communities with syringe services programs, the majority of individuals who meet those definitions are already immunized against hepatitis A. So in communities surrounding Scott County, for example, that don’t have harm reduction programs, there are hundreds of individuals who’ve been infected with hepatitis a and that can spread really, really quickly throughout a community. In Scott County, there have been five. That’s because the syringe services program meets people where they are, provides them with services in a safe space for those individuals, individuals don’t feel judged, so they’re ready to walk through the door, they’re ready to accept help.

Phil Lofton

To drill down on something that Dr. Duwve said there, we heard over and over again this season that we desperately need to reduce the stigma associated with addiction. Here’s a little more from Jim McClelland on how that can happen.

 

Jim McClelland

FSSSA last year launched what they refer to as a humanizing campaign, which is basically an anti stigma effort, called Know the O facts, to try to educate people that, number one, an opioid use disorder is a chronic disease. It has affected the structure of the brain. It has affected your ability to make what the rest of us would consider a rational decisions. And the longer you’re on it, the more difficult it can become to get off.

But the good news is it is treatable and recovery is possible. So this is the basic message that FSSA launched, last year. there’s a link to it on the next level recovery website, in.gov/recovery. It’s also on FSSA’s website. And we know that several thousands of people have access to that. We know there is some improvement in the way people are viewing this as a chronic disease rather than simply a moral failure.

Phil Lofton

Remember Shane Hardwick, our EMT from episode 7? Here’s how building relationships with his neighborhood has impacted his work.

 

Shane Hardwick

At the end of the day, we’re building a relationship with these folks, and we’re kind of showing them that someone does actually care about their wellbeing.

 

Phil Lofton:

What sort of an impact do you think that makes? Do you think that that’s a thing that people get all the time?

 

Shane Hardwick:

No, I don’t. I don’t think that’s something that people get all the time, and one of the things that I think we’ve become keenly aware of on the job that we have is that loneliness is part of that epidemic. It’s not just the addiction, but you know, what’s the root cause… and to have people that are otherwise strangers that are pouring into these folks’ lives, I think it does have a profound impact. And to know that there’s someone out there that truly cares about you and your wellbeing is, um, that’s a pretty darn empowering thing.

Phil Lofton

Reducing the stigma associated with addiction is built on empathy and trust. That trust can be a powerful tool to help patients avoid potentially addictive drugs. Here’s a segment from our conversation with Marianne Matthias from episode 2. In it, she talks about tapering patients off of opioids onto safer alternatives.

 

Marianne Matthias

if patients could be given some input into even like the rate of tapering, how fast their doses go down, patients and providers felt better about it because it gave them some control and some sense of ownership of their own health in their own treatment. Another thing we learned from that study is that patients really needed to know that they weren’t going to be abandoned by their providers. So they needed to know that their providers weren’t just going to cut their opioids and then leave. And we observed a lot of cases both in the clinic visits and in the interviews of providers, especially reassuring their patients, you know, I’m, I’m not leaving, I’m not going anywhere. It’s not going to happen. I’m going to be here with you through the whole time.

So those types of things we found were just, they helped facilitate, I think, smoother tapering because the patients really felt supported and they felt like they were, you know, in it with their provider and that they were, they were working as a team

But reducing that stigma is so important – remember, Robbie, our guest from episode 8, knew he could recover when he was in a place where he felt safe and respected. I want to close out the season with a reminder of the conversation we had with him. After all, at the heart of all of our efforts, it all comes down to people overcoming addiction and living well again.

 

Robbie

This guy took me out in the hallway. I’m bawling. Crying is, I know what to do, man. I, and he told me, he said, man, just stay here today. Stay here tonight, just cool down. If you want to leave tomorrow, then leave tomorrow, so just don’t leave tonight.

My life ain’t pain anymore. You know, I don’t wake up hating life anymore. I don’t need to escape anything anymore. You know, I want to wake up in the morning, I want to live my life, y’know?

 

Phil Lofton

It starts with a plant, but how does it end?
There’s no silver bullet to the crisis. The misuse of opioids is deeply entrenched in our society, wrapped up in so many distinct factors.

What’s more, while the opioid crisis is, of course, an issue of pharmaceuticals, to call it simply a medical crisis is missing the point. So is, for that matter, calling it a mental health issue, or a policy issue. It’s not just a problem in any of those areas, it’s a problem in all of them.

 

And that’s not a handwave or a dismissal. Because if we acknowledge the complexity of the issue, then something interesting happens. When we acknowledge that the problem isn’t just confined to one discipline, or even one industry, then we have to confront the possibility that it might be a responsibility that all of us share.

 

It starts with a plant, but it ends with research. It ends with conversations about healing. More than anything, it ends with efforts from people across disciplines and industries, fighting together to stop The Problem.

 

That’s it for the first season of The Problem. We really hope you’ve enjoyed it.

 

We’ll be taking a break for a little while to plot out the next season, which will feature an all-new, all-different complex issue centered in healthcare. If you’re not already following Regenstrief on Twitter or Facebook, make sure you do to stay up to date for an announcement coming soon.

 

Music this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Some Guy.

 

The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem

 

The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to the Regenstrief Foundation, and Sam and Myrtie Regenstrief for their vision of a better future with better care and better health for all.

Episode 11: The State

Learn what policies are changing the course of the opioid crisis in Indiana, featuring interviews from Jim McClelland and Pam Pontones.

Transcript

(00:00) Phil Lofton:
From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you?ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it?s being addressed, how it?s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we?ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don?t need a PhD to be affected by them, so you shouldn?t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

(01:11) Jim McClelland:
A Friend of mine a few months ago had shoulder surgery and he knows a lot about this issue. So I said, okay, so, um, what did they give you? And he said, well, the surgeon wrote out a prescription for 55 pills. I gave it to my wife, he said, and I told her to have the pharmacist give me 10 pills. And the pharmacist did that. And he said, I took two of them. I didn’t need anymore. So then we have the problem. When you have situations like that, of all these excess pills. The DEA, the Federal Drug Enforcement Agency does have a take back day. So a couple of times a year. And during the most recent, which was a two day event in October, the state police, the pharmacy board through the Indiana professional licensing agency collected over 10 tons of pills. And since January, 2017, those efforts on those drug take back days have produced over 27 tons of pills. I have a hard time even imagining what 10 much less 27 tons of pills look like.

(02:32) Phil Lofton:
The opioid crisis as we’ve seen is something that’s personal. It’s stories of individual struggles and recoveries that play across the landscapes of homes and clinics. It’s systemic too, consisting of systems learning to push back against the waves of overprescription, but it’s also larger than that. It’s an epidemic that affects large swaths of the population across city, county and state lines. To fight the epidemic on this largest scale, the population scale, we depend elected and appointed officials in our governments to build coalitions and develop policies that will lead to prevention of addiction where possible and fast effective recovery for those already addicted to opioids. Today we’re going to be talking to several people leading efforts within Indiana state government. This episode is going to be split at the midpoint, so be sure not to miss the second part. First we’ll feature a conversation between Regenstrief President and CEO, Peter Emb? and the executive director for drug prevention treatment and enforcement, Jim McClelland, as well as some excerpts from a conversation between Dr. Emb? and Deputy State Health Commissioner Pam Pontones.

(03:35) Phil Lofton:
We’ll also talk to Josie Fasoldt and Darshan Shah from the State’s Management Performance Hub and organization within the state government that aims to connect and empower groups through data accessibility. What’s more, they use data visualizations to directly impact the day to day efforts of first responders. Welcome to the problem. I’m your host, Phil. Lofton.

(03:55) Phil Lofton:
Jim McClelland has a history of tackling big problems. Before he was appointed executive director for drug prevention treatment and enforcement position — oftentimes referred to as Indiana’s drugs czar — McClelland was the CEO for Goodwill Industries where he oversaw efforts to try and fight intergenerational poverty. In that effort, his team found that trying to address poverty meant trying to address a host of interconnected issues. A few months ago he sat down for a conversation with our president and CEO, Peter Emb?, to talk about the opioid crisis and the lessons he’s learned along the way.

(04:28) Peter Emb?:
First question really is from your perspective, what does the opioid crisis costs Indiana?

(04:35) Jim McClelland:
Well, in monetary terms. So, IU’s Kelly School of Business has done some work that calculated the annual cost in the state at about $4.3 billion. Now that’s direct and indirect costs. The, the direct costs of that are probably around $1.3 billion. That’s health care and treatment costs, criminal justice costs, deaths, disability, foster care, cost to employers. Who also by the way are having in many cases, a very hard time filling all their vacancies because they’re having so many people who can’t pass an initial drug screen. So using the four point $3 billion figure, that comes out to be about $11 million a day, and that of course said pales in comparison to the toll on human lives, the devastation to families, just the overall damage to communities.

(05:38) Peter Emb?:
Sure, sure. That’s the, that’s really the cost. In your interview with No Limits, you talked about the crisis as something that had to be attacked on multiple fronts at the same time. Could you say a bit more about that?

(05:49) Jim McClelland:
Well, first and foremost, we want everybody to understand that, that this, this is really a public health crisis, but every public health crisis is both a medical issue and a social issue. Now we took a look at this. So when we, when we first started working on it early in 2017 and we thought, my, gosh, you know, we, we better have a strategic approach to this so we don’t just end up playing whack a mole. And so we developed that and we have two overarching goals that have been the same since we began our work.

(06:20) Jim McClelland:
First of course, is to help as many people as possible who have a substance use disorder achieve and maintain recovery so they can become or return to being productive, contributing members of their community. And at the same time, we want to take steps to help substantially reduce the likelihood that we will ever again be affected by a crisis of this magnitude arising from the use of any addictive substance. So, so we developed the strategic approach and understanding that, that people who have an addiction to opioids have a chronic disease, they have an opioid use disorder that requires treatment. Now, we set particularly high priorities, broad priorities. One is to do everything that we can to help keep people alive. A second is to greatly expand access to treatment, particularly medication assisted treatment, which is the gold standard for treatment of an opioid use disorder.

(07:18) Jim McClelland:
Third, to do as much as we could to help prevent other people from developing an opioid use disorder and fourth, to do a lot more to educate and inform people and reduce the stigma that is so often a huge barrier to effective harm reduction and treatment efforts.

(07:38) Peter Emb?:
What impact has your work had on that?

(07:40) Jim McClelland:
FSSSA last year launched what they refer to as a humanizing campaign, which is basically an anti stigma effort, called Know the O facts, to try to educate people that, number one, an opioid use disorder is a chronic disease. It has affected the structure of the brain. It has affected your ability to make what the rest of us would consider a rational decisions. And the longer you’re on it, the more difficult it can become to get off.

(08:17) Jim McClelland:
But the good news is it is treatable and recovery is possible. So this is the basic message that FSSA launched, last year. there’s a link to it on the next level recovery website, in.gov/recovery. It’s also on FSSA’s website. And we know that several thousands of people have access to that. We know there is some improvement in the way people are viewing this as a chronic disease rather than simply a moral failure. And trying to educate people that it’s almost impossible for someone to just stop. A lot of people think, well, why can’t you just say no? Well, it just, it’s affected your brain, right? And it’s the strength off opioids, the effect that they have on the brain is so powerful, but it’s almost impossible to it to just stop without treatment.

(09:23) Jim McClelland:
And, you know, abstinence only treatment, it can work, but the success rate is single digits, right? Some studies have shown 5-6% success rate. You have a much better chance with a medication assisted treatment, which is the use of one of three drugs approved by the FDA for treatment of an opioid use disorder, combined with counseling and behavioral therapy. So we’re making some headway, but we still have a long way to go to eliminate the stigma surrounding this disease.

(09:58) Peter Emb?:
Yeah. So important and it is a disease and that’s exactly right.

(08:28) Jim McClelland:
The other thing that I think is particularly important here is to understand that the younger a person starts using any addictive substance, the greater the risk of a serious addiction problem at adulthood simply because?the impact that these substances have on the developing brain of an adolescent is much more potent.

(10:26) Phil Lofton:
From previous episodes. We know that the stigma, that sense of shame and dehumanization that sometimes hoisted onto people dealing with substance use disorder can be a barrier to recovery. And as you might remember from Robbie’s episode?– that’s episode 8 — overcoming that stigma can be a key moment in journeys back to health. Here’s an excerpt from a talk that Peter and I had with Pam. Pontones, deputy health commissioner with some more thoughts on overcoming stigma at the local level.

(10:52) Pam Pontones:
It’s really getting folks to understand that addiction is a disease. Treatment is available and recovery is possible. And we do see that we see in folks who have traveled this journey, who have suffered from substance use disorder becoming peer recovery coaches, helping others find resources in the, in their community because they know that journey. Really engaging folks that it is a disease. It is not a moral failing. It is not a weakness. It’s not a lack of willpower.

(11:26) Phil Lofton:
And when you’re getting there, that’s, that’s really laudable and we completely agree of course. And that’s a, that’s a great message to be sending. As you’re, as you’re communicating that message through various means, how do you see that being communicated most effectively? And when you think about partners and others to help get that message across, what have you found to be most effective in that regard? Really it’s opening that conversation. So wherever

(11:54) Pam Pontones:
we are meeting with partners, whenever we are invited to give presentations, wherever we have a way to interact with the public, this is a message that we promote, whether it’s in person, whether it’s through billboards, whether it’s through websites or other presentations, training programs. Really taking that message wherever we go in whatever community, even if it’s at a booth, at an exhibit, there are a variety of means that we can do this as social media is another one. So we use every available tool that we have, wherever we are, and when we, we work with partners, we present that and in, in helping to spread that message. So really we’re starting from that same point.

(12:40) Phil Lofton:
Indiana is a pretty diverse state. Your situation in Scott County is different than your situation in Marion County, but at the same time, the factors that drive a person to substance use disorder are similar in different settings. They’ve got different upstreams factors. But I guess to get to a point, um, how does the approach look different in addressing those upstream factors in a place like Scott County as opposed to a place like Lake county or Marion county or Monroe County, where does, how do those efforts become distinct at those different regional levels?

(13:18) Pam Pontones:
That’s where a local communities and partnerships with those local communities become so important because, there may be common factors that lead to substance use disorder and the disorder itself has some commonalities, but it’s not a one size fits all approach to solutions because communities have different needs. They have different folks living in those communities. So it’s extremely important for us as a state agency to partner very closely with local health departments, with faith based organizations, with community groups and coalitions that are working very hard to combat substance use disorder in their communities.

(14:05) Phil Lofton:
And do you feel comfortable talking about any partnerships on that level that you feel like have worked particularly well?

(14:12) Pam Pontones:
Any good examples of that one certainly would be with the local health departments and rural first responders where, Indiana State Department of Health has granted resources for a naloxone procurement or actually distributed in the Blackstone kits so that we can get those to those areas that may need them and may not, it may not be as readily available.

(14:37) Pam Pontones:
We’re actively working with faith based organizations that have outreach in their communities. Um, across many different areas. That has been a strong partnership that we’ve been working to develop. We’ve continued to develop relationships with coroners so that we can get better data on fatal drug overdoses. Working with hospitals to be partners in their communities on substance use disorder education, working with other community groups, regarding stigma and how we can move folks toward treatment and recovery. And then encouraging and engaging folks who have traveled that journey of substance use disorder into becoming peer recovery coaches. How they can help others since they’ve had that experience is extremely powerful. But it’s really getting to know the local community, knowing what the community needs and then finding a way to connect communities to resources, um, to evidence based practices to toolkits that they can then use to, um, see what really works best for them.

(15:51) Pam Pontones:
One example again that we have of this is in our syndromic surveillance data. So people who present to the emergency department, with a suspect substance use disorder, those data are tabulated and collected. We look at the numbers of chief complaints and hospitals, and if those chief complaints of suspect drug overdoses exceed certain levels, the system generates a warning or an alert that is then transmitted to the local health department in that county where the hospital is located. We have a program now where individual counties in looking at this, formed a pilot to develop their community best practice solutions. You get this warning or an alert, what do you do with it? And they’ve literally developed toolkits and practices that are really ingrained in their community to see what works best for them. Because what works in Indianapolis may not be the same in Scott County and may not be the same in Monroe or, or another community.

(17:02) Pam Pontones:
So it’s really determining what works for them. And this has continued to grow. I believe we’re up to 13 counties now that are developing these toolkits and protocols for their own counties in responding because sometimes developing a blanket protocol may not work as effectively for everyone. But we can leverage a unique resources and talents within communities. And we can share best practices, um, when we come together and, and that’s what we’re all learning and everyone has stories and successes that they can share and we can all learn from one another.

(17:40) Phil Lofton:
Just as important though, is understanding what causes people to become addicted to opioids in the first place. Peter and I talked more about some of the complicated interconnected causes behind the crisis and how to address them with Jim McClelland.

(17:53) New Speaker:
It’s kind of interesting. There was a study done at Syracuse University that was published earlier this year, where they studied 500,000 overdose related deaths between 2005 and 2016 and they compared those county by county with various economic and social factors. And they found that the average mortality rates were significantly higher in areas with greater economic and family distress. Interestingly, they also found that average mortality rates were significantly lower in counties that had a greater number of religious organizations. Now their conclusion from that was that those organizations provide a community, a sense of community. And connectedness with people. And there’s so much of what we read these days that indicates there are a lot of people who really have become disconnected.

(18:59) Jim McClelland:
There was a lot of loneliness particularly in areas where perhaps there used to be one factory that provided the economic base for a community and it’s gone and it’s not coming back. And you’ve got a lot of people who have unfortunately lost hope. So, there were a couple of researchers who have done quite a lot of work on this, they call this and alcoholism and suicide diseases of despair. It’s something that I think it’s a whole society. We have a responsibility to see how can we reduce this? How can we replace despair with hope?I think we have our work cut out for us in a, a number of areas.

(19:50) Peter Emb?:
That’s so important. You bring that up and it is such a complex issue for that reason. We often refer to it occasionally if not as a crisis as an epidemic. And yet it’s not an infectious disease. It’s in some ways more complex than that because of exactly what you say. These social factors make it much more complex than just a medical condition, even though it isn’t a medical condition.

(20:12) Jim McClelland:
And it is, it’s incredibly complex. There’s a lot of data showing how many of our social problems are interrelated. Sure. Poverty, low education levels, crime rates. So births to young, unwed mothers in low income households, a host of health issues, they are frequently interrelated. They frequently reinforcing compound each other. Our tendency as a society has been to try to treat each one of these in isolation from the others.

(20:41) Jim McClelland:
And we’ve not done very well. We have a lot of good pieces out there. We have a lot of good pieces in the, in the public sector in the, not for profit sector but, but typically each effort is focused on one piece of a much larger, more complex set of issues. And frankly, as a society, we haven’t done a very good job of connecting the pieces. And I think that perhaps is one of our biggest challenges where we can connect these pieces and some focused ways, and with existing resources at collective resources, really be able to see a lot more effective use of those resources. And it’s similar to, and just within the healthcare sector. For example, there’s strong comorbidity between mental illness and substance use disorders.

(21:36) Jim McClelland:
The surgeon general issued a report earlier this year that indicated that about 45% of people with a mental illness diagnosis also have a substance use disorder. Although only about 51% are getting treatment for either, and only a small minority are getting treatment for both and they’re connected with each other. Eskenazi has done some really interesting work that was published not too long ago where they, at their federally qualified health centers, they have integrated primary care and behavioral health, including a treatment for addiction and mental illnesses and augmented those services with nonmedical services, that help deal with some of the social and behavioral problems that individuals are facing. And they found that that combination significantly reduced future hospitalizations and visits to emergency departments. (NOTE: See Episode 5, featuring Andy Chambers.) So it’s a way to save money and also improve outcomes.

(22:39) Jim McClelland:
So we have a, I think this is one of our biggest challenges. We need to find ways to reduce the fragmentation, integrate services, deal with people holistically, often with the whole family. And we’ll find that we can get much better results with the same total resources that, that we’re applying to this, to a lot of these issues individually. Right now, given the, that need for a holistic view, how do you, begin to tackle this at a policy level? That’s, that’s a whole other level of complexity. So, well, I can tell you what we’re going to be doing in 2019, and the governor recently announced his 2019 agenda. There are several items there that apply to this issue, and by the way, this remains one of the governor’s top priorities, going into the third year of his administration.

(23:29) Jim McClelland:
But one of the parts of that agenda includes, reducing, taking additional steps to reduce a perinatal substance use disorder and neonatal abstinence syndrome. we, we’ve taken some steps, and supported some programs, several programs, along those lines. We’ve got to be doing more, this coming a year. We are going to also significantly expand, our support for additional recovery housing and Indiana. We need a lot more sober housing opportunities for individuals, some for men and for women, some for families with children, where, where people can support each other. They can be in an environment without the, the triggers that so often lead back to a more substance use disorder, substance abuse. And we’re going to be doing that. We also are going to fund some pilot programs using medication assisted treatment and some of our jails, this is, there’s a huge need for this.

(24:37) Jim McClelland:
Unfortunately, our jails in many cases have become defacto detox centers without treatment. Now there are a few jails that were where they are providing some treatment, but we need a lot more. What happens is if an individual, with an opioid use disorder is in jail, for a few months, let’s say, that individual is losing the tolerance, but the craving is still going to be there. And then when they’re released and they go back to using, they don’t have the tolerance for the same amount that they were using before and their risk of overdosing and dying during the first two weeks of release from incarceration, is extraordinarily high. And we’ve got, we just have to change that. Yeah. I have a young man, I have a friend who’s a, who’s 25 years old right now.

(25:37) Jim McClelland:
I was talking to him, not too long ago and by the way, his problems began when he was 15 and had an appendectomy and the surgeon prescribed an opioid. And as he said, that first pill that he took, he said, I fell in love. And that was the beginning. And so I asked him, he said, any history of alcoholism in your family? Oh yeah, it’s all over the place. He said, there’s also a history of depression in my family. You take those two, there was a genetic predisposition to this. At any rate, he’s doing really well now. But he said that, about a year ago he was arrested and he knew he was going to have to go to jail. And so he hid some stuff in his parents’ bedroom. they didn’t know anything about it.

(26:28) Jim McClelland:
And, he said, that was in jail for about three months. And when I got out, I went back and, and that night I went home that night, I used what, what I hid and he said I overdosed. Wow. And his mother found him now, he wasn’t breathing when she found him, but she, she knew CPR and they also had Narcan, the reversal agent for an opioid use disorder in the house. But because of his history, and they brought him back and he’s, he’s doing well now. He’s, so he’s on medication assisted treatment. They’ve got a good job. He’s doing well. But the point here is that this can happen and it happens way too frequently. There was one study that indicated that, a person, with opioid use disorder released from incarceration without treatment, has a 129 times greater risk of overdosing during the next two weeks than the general population.

(27:31) Jim McClelland:
I couldn’t. it’s just staggering. At any rate, we’re going to be increasing our support for, for, pilot programs in some of our jails. We’re also going to, provide some, support, to help, implement more a family recovery courts in the state. We only have seven of those. They’re there for families, involved in Chins proceedings involving substance use disorders, to improve treatment completion, a family reunification, and also reduce a, not a place out of home placement costs. The chief justice and and DCS are working together on some of these initiatives. we’re going to be providing some support, and they would like to see the number increased, to about 26 around the state.

(28:24) Jim McClelland:
We’re not going to be able to do that in the next year or two, but, but we can certainly, probably, substantially increase the, number that we do have.

(28:33) Peter Emb?:
Yes. So, you know, you’re very well aware, I think he said, and in 2017, interview with Indianapolis monthly that you believe we still hadn’t seen the worst of the addictions crisis. Do you think the worst is behind us now or are we still seeing it worsen?

(28:47) New Speaker:
Well in, in 2017 there’s no question the numbers were worse. In fact, a lot of what we, we’ve been, we’ve been working on this, at the state level, out of the governor’s Office for two years now. And, and a lot of the things that we started in 2017 didn’t start having an effect until toward the end of 2017 or into 2018. but so the numbers in 2017 were really bad. This year we are seeing some encouraging signs, and the CDC posts on their website some provisional data. Now it’s very preliminary numbers and we’re not drawing any conclusions from it yet. but, there’s some preliminary, numbers on overdose deaths that indicate during the early part of this year, there actually may have been a decline in deaths. it’s way too soon to celebrate. I try to remind people that it took this epidemic, 20 years to develop. And there are no quick or easy solutions to it. we can end it in a lot less time than it took to create it, but still it’s not overnight. And even if we could eliminate all overdose deaths, we still have in this state, literally tens of thousands of people who need treatment. They have an opioid use disorder, they need treatment in order to be able to recover.

(30:08) Jim McClelland:
So, this is going to go on for a while. And then in addition to that, we have an awful lot of kids who have been affected by parental substance use disorder. And that’s a, that’s a whole nother topic.

(30:19) New Speaker:
Yeah. Yeah. I wonder if I could follow up on that. I, I appreciate what you’re saying very much and one hopes that those numbers that are just an early indication hold and we do start to see some improvement. Um, are we also seeing some differences? Do you have any sense of whether the nature of who’s being affected is changing? Um, what’s happening on that front?

(31:12) Peter Emb?:
As much as you’re doing, what is it that keeps you up at night? What are the things you really worry about with regard to the crisis?

(31:18) New Speaker:
There is nothing about this epidemic that troubles me more than the impact on children. we have learned a lot over the last 20 years about the longterm effects of what are termed adverse childhood experiences. Things like, physical, emotional or sexual abuse of a kid, a death of a parent, divorce, substance abuse by a parent, mental illness of a parent, incarceration of a parent. These are cumulative. There’s a lot of research on this. it really started back in 1995, in a project of some research done by the CDC and Kaiser Permanente and the impact is cumulative. So the more of these you have, the greater the likelihood, in other words, the higher your ace score.

(32:13) Jim McClelland:
That’s how they’re termed adverse childhood experiences. Aces, the higher your ace score, the greater the likelihood of a number of negative economic and social outcomes. A host of chronic diseases, including alcoholism and substance abuse, and early death. So high ace scores don’t have to be destiny. But if as a society, we don’t do enough to help mitigate that impact, we and those kids are going to pay a heavy price just a few years down the road. We’ve got to stay aware of this and we’ve got to do something about it. And this is a responsibility of our whole society. We cannot just let this happen to these kids and to our society as a whole.

(33:07) Peter Emb?:
Well, Jim, thank you so much for sharing those thoughts and more importantly, for everything you’re doing on behalf of, of, all of us, to, help, address this crisis. I really appreciate it.

(33:20) Jim McClelland:
Thank you, Peter.

(33:20) Peter Emb?:
Thank you.

(33:22) Phil Lofton:
Join us in Part 2 of the episode, available now, when we hear from Josie Fasoldt and Darshan Shah about Indiana?s Management Performance Hub, and how Data Visualizations are empowering first responders to save lives. Music this episode was from Everlone and aBroke for Free. Our theme and additional musical cues in this episode were written and performed, as always, by Luger and the Senators. The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to Peter Emb?, who slid behind the interviewer?s mic for this episode.Jim

Bonus Material

Episode 11 pt. 2: The State

How can better access to data change a state’s level of health? Learn about the unique work of Indiana’s Management Performance Hub, featuring discussions with Darshan Shah and Josie Fasoldt, and learn what you can do to help solve the opioid problem, with more from Jim McClelland.

Transcript

Phil Lofton:                  00:00               From the Regenstrief Institute, this is The Problem. The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated big, hairy issues that impact healthcare on the societal level. Every season you’ll hear about a different big, massive problem and each episode within that season will feature a different discipline or industries take on that problem, how it’s being addressed, how it’s being talked about, and the trials and triumphs of those involved clinically and personally. This season is all about opioids. Over the next few episodes, the problem, we’ll talk about how we local communities, Indiana and the United States got into this crisis, how people suffering from addiction are treated and how the needle can be moved on addiction. This is a podcast for anyone who might be interested in how these problems have developed and are approached. You don’t need a PhD to be affected by them, so you shouldn’t need a PhD to learn more about them. Regenstrief institute is a global leader dedicated to improving health and healthcare through innovations and research and Biomedical Informatics, Health Services, and Aging. Welcome to The Problem.

Phil Lofton:                  01:11               Hey everybody. Welcome back. In the first half of this episode, we spoke with executive director for drug prevention treatment and enforcement, Jim McClelland, as well as deputy state health commissioner of health, Pam Pontones about Indiana’s efforts to curb the opioid epidemic. In our conversation, they stress collaboration and teamwork for achieving policy goals. In this half of the episode we’ll learn about the work of the Indiana management performance hub, a unique organization that’s connecting databases across organizations and empowering them, especially first responders to take new interesting approaches. Welcome to the problem. I’m your host, Phil Lofton.

Josie Fasoldt:                01:46               I’m Josie Fasoldt. I’m a director of engagement and analytics for the management performance hub, at the state of Indiana and I help support health and human services agencies and organizations for data driven solutions in state government.

Darshan Shah:              02:00               And My name is Darshan Shah. I get the privilege of serving as the state’s chief data officer and lead the team at the management performance hub. Last year through the vision of our governor, Governor Holcomb and our legislature, we were formally codified into law. I mean it passed the house and the Senate back in Q1 of last year. , and then in July, first of last year, we formally were codified into law, which allows the management performance hub to have sustainability, you know, going forward to be this data analytics center for the state. You know, our role very much is to, drive and improve the lives of Hoosiers through data innovation and collaboration. And we really focus a lot on that c on the collaboration piece because fundamentally we don’t create any value unless we create value through the agencies and the entities that we, that we serve.

Darshan Shah:              02:57               I heard this in a different slide somewhere and somebody called it the BLT slide, , which I consider the mph here as when you think about those three letters we’re the l and the t the, we have the ability to be able to help kind of reduce roadblocks from a legal perspective and from a technology perspective. But we still rely on the entities that we serve to for the business use cases to ensure that improved operations at services, improve policy, you know, that type of thing. I always describe what we do from an MPH standpoint. A lot of people like to take the word data and analytics and squish it together as data analytics, we are very much first and foremost a data shop. We do the analytics when the data is sensitive and it can’t be unlocked and shared with the external community nearly as easily.

Darshan Shah:              03:41               But ideally in partnerships and being able to partner with these agencies and entities externally get them the data and allow them to run the analysis to be able to drive improved operations services. Programming is obviously ideal. We work with a number of agencies on the opioid epidemic and Josie will likely be diving into that a little bit further and deeper. And we work with our Family and Social Services Agency on medicaid challenges. We have worked with the auditor’s office, you know, when it comes to financial transparency, we’ve worked with the Department of Education Commissioner for Higher Education and Workforce Development on Education and Workforce Related Challenges, Department of Correction on recidivism. And the list goes on and on. , those are all internal externally though we get a chance to work with you and your friends here at Regenstrief but also working with IBRI in Brookings and CACP and Goodwill and the list goes on. But fundamentally we want to be that transmitter that the organization that makes data available from the state and gets in the hands of key partners who can do great things with it.

Phil Lofton:                  04:40               How has the MPH’s work been used to combat the opioid crisis?

Josie Fasoldt:                04:46               Sure. So the mph has been used primarily by a drug data working group that’s connected to the Indiana Commission to combat drug abuse. And I’ll talk a little bit about that commission because it’s the stake holders there that have just really made the state of Indiana successful with using data to combat the crisis. So in 2017 governor Eric Holcomb, he established a position for the director of treatment prevention and enforcement because he really saw a need to bring both public health and public safety subject matter experts, program directors, ADA people together so that we can really think about this crisis more effectively and be more proactive instead of reactive. And Jim McClelland is that director for the state of Indiana with the governor’s office and his team corrals, all of us together for this work and the commission has a mission statement that they want to have a data driven system so that we can as a state look at substance use disorder more holistically and help individuals and communities get to a place where they can improve, recover and build their communities and just a more positive way and the mph with this drug working group, when we were thinking about the state of driven system, we heard from our state agency partners kind of two different things.

Josie Fasoldt:                06:11               One was that they needed to visualize one another’s data and see one another’s data in more real time before data was siloed in their specific agency and area. But they really wanted to share and understand what was happening with one another’s information. But then there was also this need to be able to see outcomes for people more holistically. So for example, the Department of corrections wanted to know how many of those that leave a state prison go on to die of an opioid overdose or have a Naloxone event. The Department of corrections doesn’t know that because their systems were not linked with other state systems, but that’s very important for them in order to understand if they’re being effective with their substance use treatment programs inside state prisons, that those are really hard and really good questions. It takes a lot of data work. So the mph over the last two years, that’s what we’ve been doing and helping this drug data working group with, we’ve visualized different pieces of information so that state agencies can look at each other’s stuff and more real time to see what’s going on. And we’ve connected data systems from both the public health and public safety sectors so we can start asking harder questions.

Darshan Shah:              07:25               So in agency’ gonna come with their one Dataset, we’re able to enrich you with the linkage with these seven or eight other datasets and we’re able to give them right back to them and then they were able to be able to take that information, this enriched data set to be able to drive improved decisions.

Josie Fasoldt:                07:40               I want to talk about, one of the ways that this data gets used for, for just a little bit is data visualization and the way that you guys visualize data is so interesting and, and, and so, , widespread just across different disciplines. What is the power in data visualization? Where do you guys see that data visualization really being able to drive change?

Josie Fasoldt:                08:04               I’ll maybe give the example of the naloxone heat map and that he maps available on the next level recovery website. And it shows where Naloxone is being administered here in the state of Indiana. So anytime an EMS provider goes out for an ambulance run and they provide Naloxone to an individual. We are putting that in a map so that EMS providers can patrol areas and a more efficient way. And so that communities can see what’s happening around them. They can use that map to say, this validates my experience. I need resources in my community and I can use this to show other people why I need resources to come in for treatment in my area. But I think, too, the power is just, it gives humanity behind the data. The power of data visualization is that it gives humanity and human experience behind the data.

Josie Fasoldt:                09:01               I think even within MPH, so many of us who work on this drug work, we have personal experiences of people who are struggling with substance use disorders. It affects us as people in this work. And when you look at a graph for you look at a heat map, it’s not just a pretty picture. It validates what people are feeling. Right? Right. And that’s really important for change and it just gives more ammunition to people who might feel voiceless. Yeah. And that their experiences are not being shared. Yeah, and I think it’s just the way MPH is just here to support that voice for people in the state, including our own people that work in our agency.

Phil Lofton:                  09:43               I love that you put it that way because when I was, when I was on the site this morning with my friends, we were, you know, zooming around on the map and one of the things that you do instinctually is you start talking about it in terms of neighborhoods, right? It’s not this event that happens at an intersection. It’s, it’s, oh my goodness. I was just there last week at this restaurant and there was an overdose that happened there. You start to really, really put it into real world context. I think that that is such a beautiful way it humanizes the data, right?

Josie Fasoldt:                10:15               The first thing you do is you put in your address.

Phil Lofton:                  10:18               Yes, yes, that’s so true.

Josie Fasoldt:                10:21               We want to know what’s happening with your neighbors, right? And your community. It’s a data set that I think not a lot of people in the general community would think, oh, this could make a really big impact in my neighborhood. If, if I had a naloxone heat map, right, but we are able to work together and see there’s this unique data set out there and a unique, , medication being given called Naloxone. And if we actually made that more public than it could empower EMS providers as they patrol and give communities the ammunition they need to know what’s happening in their areas. That’s an interesting one and it’s not one that people would generally think of. And so that also helps us to just not put data in a box too. You know, like yeah, there could be a very interesting use case for a specific dataset and we shouldn’t just limit a dataset and thinking like, oh, that’s not going to be useful. , because really anything can be useful with the right use case behind it.

Darshan Shah:              11:24               One of the things, Josie, I know you described to me before that I thought may be helpful for some of our listeners is, by making the data available through the Naloxone heat map, , it’s allowed us to actually improve the data acquisition and color that in further, can you touch on that?

Josie Fasoldt:                11:42               Yeah. So when we released the Naloxone heat map, what can happen, it can validate people’s experiences but can also not validate their experiences, which is another important thing. So some communities and counties were saying, I don’t see our naloxone data here. I know that there’s more naloxone deployments happening in my community. Yeah. And it helped us as state agencies, MPH and the Department of Homeland Security to dig deeper and see well is there a disconnect in the systems? Is there like a technology problem where data isn’t coming in like it should? And so we’ve been able to uncover some of those things so that the data can flow through to the state more. And then those communities stories will be shown on that heat map. So putting data out just makes data better.

Darshan Shah:              12:32               If you get the information out, people can consume it, people can drive better decisions with it. And then once they see the information they can actually improve the data quality, you know, upstream, which only creates this virtuous circle to continue to allow this to improve.

Phil Lofton:                  12:46               And thank you for talking about things in term of upstream and downstream. Cause that’s a perfect segue to our next question. And we’ve touched on this a little bit already but, but I’m interested to hear more about this. What are some of the downstream implications that you two have seen in terms of starting to visualize this stuff, starting to make data more available to agencies?

Josie Fasoldt:                13:06               So another downstream effect that we’re seeing at the state is really just around this collaboration with data sharing. The stakeholders involved in this drug data working group are doing so much robust sharing. Other states cannot believe what we’re doing. A call us all the time and want to talk to us and ask how did you get this started? How are you able to share this kind of data together with each other in a way that’s secure? And , also empowers the state agency as the subject matter expert.

Josie Fasoldt:                13:40               Right. But we’ve been able to do that together as a group and it’s very surprising for other people. But the downstream effect is that you just have more informed decision making and you know, the right people to talk to about certain information in another state agency. And, , you’re just able to actually connect even deeper into how we can help solve the opioid crisis in our communities and not just work within your silo. Right. How are you guys able to do it? What’s the secret? , it’s just people, I’m serious. It’s just, , having people who want to build something and do something good and new and necessary and it’s sometimes hard and scary because no one is doing it. Yeah. But I think that there are just a lot of people and just a lot of good leadership at our state that does want to get this kind of stuff done, you know?

Darshan Shah:              14:44               That was a great answer. And I could not agree more than with everything that Josie just mentioned. We talk about how the MPH has, was codified formally in just this past July. That takes an incredible vision from our governor. It takes an incredible vision from our legislature. A requires incredible amount of support from the various agencies who actually own the data to make it available to this overall kind of combination too. To be able to realize that one plus one doesn’t equal two one plus one equals five one plus one plus one equals 15 and it just this exponential kind of growth associated with it. But I think that’s actually in many ways. It was probably one of the biggest surprises I think I had, you know, coming into this role because I kept hearing, you know, coming in that Oh, you’re going to get so much push back.

Darshan Shah:              15:34               There’s going to be so many folks are going to be, there are not going to want to share this data. They’re going to want to live in their data silos. And it’s so not true when you go out and you speak to different agencies, when you speak to different external entities, everyone wants to share. They’re just looking for the channels to be able to figure out how to do it legally and technically in order to be able to make sure that this stuff is done appropriately to be able to drive the right outcomes. , so I think that’s probably been the biggest surprise. I think for both of us. It’s just around around the willingness and the excitement and the energy around, you know, from our governor to our legislature, to all the agencies and the extra groups that we work with, to be able to come together to be able to kind of drive these broader outcomes.

Phil Lofton:                  16:15               The energy doesn’t end at state organizations and nonprofits. Though many people in Indiana and elsewhere in the country are itching to do something. To close out the talk that Peter Embi and I had with Jim McClelland, the bulk of which was featured in the first part of this episode, we asked him what the average person could do to make a difference.

Peter Embi:                  16:32               Just thinking as you’re talking here, imagining the average person listening to this podcast, what, I imagine you’ve thought about this with all your discussions with folks, what can the average person do about this to help it from your point of view? The average citizen who just recognizes it’s a concern. Maybe they happen to be one of the lucky ones that don’t have somebody in their family, but they just want to do something about this. What would you recommend?

Jim McClelland:            16:56               Well, I think, certainly they can learn as much as they can about it and help educate others, help reduce the stigma. ,They also might to want to volunteer to be part of a support group for people in recovery and help them stay on track. There are a number of volunteer recovery support groups around the state. Some of them are church related, some of them aren’t, but individuals who just care and they, and they want to help and so they, they wrap themselves around people and help them stay on track.

Jim McClelland:            17:34               And if, if and when they do relapse, why, help them get back on track. So that’s something they can do. They also might consider, take a look and see if there is a local coalition where they be able to make some contribution. I would also say that efforts to help prevent substance abuse among young people are particularly important mentoring programs for a young people who don’t have… Well let’s put it this way. They need a positive long term relationship, with a responsible adult, and there are a lot of kids like that. Supporting afterschool programs for kids. Supporting early childhood development programs for kids can also be helpful. But, there is so much you can do with kids. I’m just really concerned about doing more to give kids alternatives to drug use.

Phil Lofton:                  18:47               Maybe you listening to this might feel energized to try and make a difference in your nine to five. Maybe you’re a scientist looking for a way to make your research, have more of an impact. Darshan Shah has some thoughts about how you can help

Darshan Shah:              18:59               When you think about the MPH, you know, we very much want to be an employer of choice, a partner of choice. And in this discussion, you know, , we’re obviously always seeking different, and , very, very difficult to find folks to kind of join our team. So that includes folks in the data management of the data architecture type of world specifically. Right now we’re seeking that. But in addition to that, you know, we have various programs in place. We have employee interchange agreements, you know, where researchers are coming in house with the MPH and working side by side with our team to be able to drive the analysis necessary to be able to improve, you know, state policy decisions.

Darshan Shah:              19:41               But at the same time being able to help, you know, get access to some of this information for the researchers to be able to thereby publish. So there’s these employee interchange agreements that could be possible. There are donated professional programs where we are seeking, you know, some of the middle large employers around the state who are potentially looking at supporting their corporate social responsibility needs, but also create really interesting and exciting development opportunities for their employees to do a bit of a sabbatical, you know, with the MPH to be able to improve the state’s interest but also be able to create better connectivity, you know, with these organizations. , so this was just a few things that I would love to, just kind of mention to your listeners if, if there are researchers are interested in employee interchange agreements, if there’s larger employers listening who want to participate or donate your professional program, if there’s a data architect out there who is really interested in making a huge impact, you know, with the state, we would love to hear from all of you. And then of course, you know, if there are specific data sets that we can provide at the state, that can further your interest. Please let us know.

Phil Lofton:                  20:47               This season, we’ve looked at the Opioid crisis from so many different angles, we haven’t covered everything, of course, but I hope this podcast has given you a better appreciation for the depth of the issue. After all, as much digging as we’ve done in the past several episodes, we’ve barely scratched the surface.

                                                            Join us next time as we rewind and take a look back at the stories we’ve covered this season. It’s our first season finale, on The Problem.

Phil Lofton:                  21:14               Music this episode was from Broke for Free. Our theme and additional musical cues in this episode were written and performed, as always, by the Organization of Cartographers for Social Equality.

The Problem is produced at studio 132 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org/theproblem

                                                            The Problem is written, hosted, edited and produced by me, Phil Lofton with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and Social Media Marketing is done by Jen Walker. Special thanks to Peter Embi, who slid behind the interviewer’s mic for this episode.

 

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