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In this episode of Minding Memory, Matt & Donovan speak with Dr. Joanne Spetz, the Brenda and Jeffrey L. Kang Presidential Chair in Healthcare Finance and Director of the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco (UCSF). Joanne talks with Matt & Donovan about who makes up the professional workforce of people who provide dementia care and how these individuals play a critical role in the delivery of services. Joanne also discusses how different professional roles interact across setting of care. Lastly, Joanne introduces a new study she is working on with Donovan called the National Dementia Workforce Study (NDWS) that will be surveying a large group of clinicians who provide care for people living with dementia.

More resources

Faculty Bio: https://profiles.ucsf.edu/joanne.spetz   

Article Referenced in Podcast:   

Candon M, Bergman A, Rose A, Song H, David G, Spetz J. The Relationship Between Scope of Practice Laws for Task Delegation and Nurse Turnover in Home Health. J Am Med Dir Assoc. 2023 Nov;24(11):1773-1778.e2. doi: 10.1016/j.jamda.2023.07.023. Epub 2023 Aug 24. PMID: 37634547; PMCID: PMC10735229. 

Previous Minding Memory Episodes on Dementia & Family Caregiving:  

S1Ep9: Caregiving for individuals with Dementia (with Amanda Leggett) 

S1Ep10: What is it like to be a Caregiver for a Person Living with Dementia? (with Peggy Arden) 

CAPRA Website: http://capra.med.umich.edu/ 

Transcript

Donovan Maust:

Our listeners might recall that back during the first season we did a pair of episodes specifically on dementia caregiving, which included an interview with Peggy Arden, who was a caregiver for her husband. Generally, I think when most people hear the phrase dementia care, what they think of are family caregivers like Peggy. But there's another group of individuals who provide a critical part of dementia care. Those are the individuals who, as part of their occupation, provide care in a professional capacity.

So, who exactly is in this professional workforce of people who provide dementia care? The truth is, it's pretty much everyone in healthcare. We've talked previously about the demographics of dementia. So if you work in healthcare, unless you exclusively care for children, you are a dementia care provider. But because of the functional needs of people with dementia, meaning as the illness progresses, people need help with non-medical tasks, like bathing or getting dressed, these individuals need help from professionals providing services other than just medical care. I'm embarrassed to say that it's taken us till season three, but we're finally going to have an episode talking about their professional dementia care workforce and what exactly that looks like.

Matt Davis:

I'm Matt Davis.

Donovan Maust:

I'm Donovan Maust.

Matt Davis:

You're listening to Minding Memory.

Donovan Maust:

Today we're joined by Dr. Joanne Spetz. Dr. Spetz is a health economist and Brenda and Jeffrey L. Kang Presidential Chair in Healthcare Finance at the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco, or UCSF. She's an internationally known expert on the health workforce who leads the UCSF Health Workforce Research Center on long-term care and also the NIA-funded AWARD Network, AWARD as in Advancing Workforce Analysis and Research for Dementia, which is focused on the direct care workforce for persons living with dementia. And as if all that is not enough, she and I are working together on an exciting new project that will discuss towards the end of our conversation. Joanne, welcome to the podcast.

Joanne Spetz:

Thank you for having me.

Matt Davis:

Let's start with a really basic question. When a researcher uses the term workforce, who exactly does it include? I'm assuming that it includes physicians and nurses, but what about other types of healthcare providers and professionals? In other words, what are the boundaries of the healthcare workforce?

Joanne Spetz:

That is a great starting question because you are absolutely right. The public tends to think doctors and nurses. Nursing is the largest licensed profession in the healthcare space. There are about four times as many of them as there are physicians, but the even bigger workforce is what we call direct care workers. That consists generally of nursing assistants, home health aides and assistants, and personal care aides and assistants. So all of those jobs that are sometimes certified, generally not licensed, don't require a lot of formal education, maybe a training program for being a certified nursing or home health assistant. And beyond that, it's pretty free entry and a lot of the training comes on the job.

Some people also would define the health workforce based on settings of care. Such as in a nursing home, you've got dietary staff, you have environmental and facility staff, you have a lot of other people, janitorial staff. You have a lot of people who are really essential to providing care who don't have necessarily healthcare training, per se, but are absolutely essential to meeting the needs of people receiving healthcare services. Sometimes they get counted, sometimes they don't. It depends on who's doing the study and how they are conceptualizing the issues that they're interested in.

Donovan Maust:

I remember, I think in one of our earlier conversations, Joanne, you made a comment, something along the lines of workforce research is like the redheaded stepchild of health services research. Sorry if I misquoted you there. But, can you elaborate on where that was coming from or how you think about how workforce fits in with health services research?

Joanne Spetz:

Sure, sure. That isn't just because I have red hair, right? Health workforce research has been an interesting field to be in because it's kind of where labor economics, to some degree industrial organization, and sociology of the professions, and then health services research all merge together. It's been an area that has been really underfunded and under-attended to over the years.

National Institutes of Health, generally, historically, a lot of their programs have focused on disease treatment or disease pathways, or... It's kind of assumed that the workforce will know what to do with whatever the study comes up with, but there's not a lot of attention to the workforce per se. Similarly, a lot of the studies that AHRQ has funded over the years is comparative effectiveness research, organization of the healthcare system, and financing, and those sorts of issues, but the workforce has rarely been really the centerpiece of the focus.

I think that's been changing for a few reasons. I think one is the greater attention to what we loosely call implementation science, that when you start talking about implementation science as a field and the idea that we should be systematically studying how new processes, how new evidence, how new technologies or pharmacy drugs or whatever it is get into the field, understanding how that gets implemented is really hard to separate from the people who are going to implement it. Inevitably, implementation science starts having to pay attention to the workforce involved.

I think the other factor, and we really see it blow up over the past five years or four years or so, has been the pandemic. We really saw with the pandemic a big batch of issues come up around the workforce and its readiness to handle an emergency situation, and the burnout, and the stress. Now we're looking at what may be pretty big losses of people in the workforce to burnout and stress. It's kind of every time you turn around, it seems like there's a workforce crisis. That has heightened the awareness, especially among the public, but I think from a science standpoint I would probably point to the interest in implementation science as one of the big drivers in making it more interesting.

You're seeing many NIH branches now have notices of special interest around workforce specifically. NIDA has some. NIA has a notice of special interest. We're just seeing more attention being paid to the roles of all the different healthcare professionals across the range of skills and formal training and how they are affecting the care that people receive.

Matt Davis:

Does HRSA ever provide funding?

Joanne Spetz:

HRSA does. HRSA has been in this space, actually, for a long time. They have a program that is the Health Workforce Research Centers. I direct one of them, and there are centers all across the country that's focus on different areas of work. The program originated around 1997 when there were six workforce centers that were focused on regional health workforce issues.

The San Francisco one focused on Region 9 of HRSA, so California, Arizona, and Nevada. There was one up in Seattle that grew out of their rural health center, and they focused on their region. I think they're Region 10. There's one in Texas. There was North Carolina at the Sheps Center, University of Albany, and there was one at University of Illinois, Chicago.

Those were all defunded in 2007. It was all part of Republican efforts to reduce the budget, and this was one of the programs that got targeted. It was resurrected in the Affordable Care Act. The resurrection then was regional. Or not regional anymore. The resurrection was to focus on topic areas. Those of us who lead those different centers, we all know each other. I mean, it's not a big research space. Everybody knows everybody in the space. We collaborate with each other a lot. When we do compete, it tends to be friendly competition.

But, the funding's not that much. I mean, each of these centers is, I think, 450,000 a year, and they want you to do four projects a year. So, these are small projects. You can't do a ton of work on that funding. And that's total costs, so the direct costs are even less.

There are two exceptions. There is one center that is at UNC Chapel Hill on behavioral health that's co-funded by SAMHSA, Substance Abuse Mental Health Services Administration. Then, there's a new one that is at the University of Minnesota that is co-funded by CDC focused on the public health workforce. Those are double-sized centers, which means they have to do double the work. It's really breakneck for them.

Donovan Maust:

Can I ask quickly, since I haven't had a chance to ask before? Coming out of grad school in health economics, how did you end up deciding to focus on workforce research?

Joanne Spetz:

Well, first, historically, this'll reveal my age, health economics wasn't really a field back then in the economics PhD programs. I mean, it really just wasn't a field per se. There were people who focused on health economics, but there were really not any universities that had enough health economists to claim it was a field. There were no comprehensive exams in it or anything. I did labor economics and public finance. I wanted to do policy-oriented, applied economics.

In my second year, I was pretty miserable after a year of nothing but theory. Vivian Ho, who's at Rice University, said, "You should ask Victor Fuchs if he needs a research assistant. I worked with him, and he was a really great mentor. He's very policy-oriented, and you'd probably like him a lot." I said, "Sure. I'll call him." And he hired me. I mean, I didn't really know who he was. He really truly is like the grandfather of the field of health economics.

Then, also Doug Staiger, who's now at Dartmouth, was at Stanford at the time and taught a PhD level health economics class as an elective for all of us. That got me into the health space. Then, merging health and labor economics together meant, in terms of data resources, you could study physicians or you could study nurses. A lot of people had been studying physicians. Not very many people had studied nurses. My mom was a nurse, so I had a lot of affinity for studying nursing. And there you go. That's kind of how I got into health workforce as a focus area.

Vic had advised me. He said, "You're in a niche. You've got expertise in building your career at this early stage of your career. I recommend you really focus on it." He said, "I know you have a lot of ideas and sometimes want to branch out, but I really think you should focus on this. I think there's a lot of opportunity in this space." That was really good guidance.

Matt Davis:

When I think of workforce studies, I imagine these big empirical forecasting, but you mentioned something made me wonder where the line is between studies focused on workforce and occupational issues. Or maybe they're sort of intermeshed a little bit.

Joanne Spetz:

That is a great question. I think a lot of what the casual reader will see are is there a shortage of X, Y, Z profession and have a sense that that is what a lot of the field is about. But that actually isn't what most of us do. Certainly in economics, they don't teach you how to do that kind of forecasting. You kind of make it up as you go along.

I think there are a lot of different topics that you see people focus on. There is a whole body of research around educational trajectories. As an economist, I'd call it human capital formation. How do you develop the skills that you have in doing what you do? Is that education? Is it training? Is it the network of peers that you work with?

You see a lot on policy-related issues. One of the chapters of my dissertation was how did hospitals adjust their nurse staffing in the advent of the Medicare prospective payment system? When Medicare was changing payment to hospitals so hospitals no longer could just send Medicare a bill and get paid for it, how did they adjust and how did that trickle down to what happened to the nursing workforce? The short answer was all the cuts we saw in nursing was basically being driven by sicker and quicker medical care. It wasn't really that nurses were being singled out for cuts, it was that they were being the biggest workforce in the hospital, the collateral damage that came from all of that.

People who are from a sociology background, there's a whole literature on sociology of the professions, theory of regulation and licensure, how scope of practice regulations affect access to care for the population, or patterns of care, or prescribing. There are a lot of different directions that that focus on the workforce can go, which is what makes it fun.

Matt Davis:

It must be complicated when you start getting into professions. I mean, nurses, and physicians, and the professional organizations, there must be a fair amount of, from a policy perspective, some really interesting things to tackle. I don't know. There's time that the professions knock heads every once in a while about scope of practice and those types of things, being at a school of nursing myself, you know?

Joanne Spetz:

I have been on the receiving end of some of those issues just because a lot of my own research, and I've done a number of literature reviews on scope of practice as an example for nurse practitioners. In the studies I've done directly, as well as in the literature reviews that I've done for a variety of reasons, nurse practitioners provide great quality of care, so do nurse midwives and PAs. There's no evidence that having physician oversight and formal agreements and all of that actually benefits the patient or the consumer in any way. Whenever I point that out, there's periodically people who pop up on Twitter, or X, or whatever you call it nowadays, that I have to block because they just get too annoying, or who don't want to believe the evidence for whatever reason.

Matt Davis:

We wanted to briefly touch on your article that was published earlier this year in JAMDA, which is the Journal of the American Medical Directors Association. We'll make sure to include a link to the article. We're not going to do a deep dive here, but I just want to provide the title of the article, The Relationship Between Scope of Practice Laws for Task Delegation and Nurse Turnover in Home Health. It seems to us the title basically covers the greatest hits of workforce research topics. You've got scope of practice, task delegation, and turnover. If we have listeners who haven't thought much about those issues, we're wondering if you could just provide us a very high overview of what those are and maybe some examples.

Joanne Spetz:

Yeah. That paper was a lot of fun to do and was led by Molly Candon at University of Pennsylvania, who's a fantastic collaborator. Scope of practice really refers to who is allowed to do what and in what circumstances. In the context of that study, the scope of practice laws were really focused on what tasks are reserved for licensed nurses, and those could be licensed practical nurses or registered nurses, versus what tasks could be delegated to an unlicensed person, such as a home health aide or a home care aide. AARP has done a really nice job as part of their long-term services and support scorecard of surveying states about under their regulations what things can be delegated to aides.

To use a specific example for that, in some states, including my home state of California, a nurse aide cannot be delegated any medication administration at all whatsoever. If the aide is hired through an agency and a licensed nurse does an assessment of the patient, usually that'll be a registered nurse, sometimes a nurse practitioner, assesses the patient, identifies their care needs, arranges for the care team and the aides to be available for the individual. If part of that care plan is, "If their knee hurts, give them Tylenol," the aide can't give them Tylenol. Not allowed in California.

Now, if I hired that person myself directly from Craigslist and paid them cash, I could have them do whatever they wanted them to do. But if I am going through a formal agency as a private purchaser, there are all these things that cannot be delegated to them. Whereas in Washington state, in Texas, and many other states, in fact, most other states, the aide could do that medication and actually could do even much more complicated or risky medications.

That actually was the key scope of practice thing that we were interested in, is from the AARP scorecard, there are 16 different items in delegation that we then tabulated. And they tend to hang so that states either are more often than not doing 14 or more or they're much lower numbers of tasks that they allow them that, so we divided it at that point.

Donovan Maust:

Can I ask the extent to which those track together? For example, if a state is more conservative, not meaning Republican or Democrat conservative, but conservative in terms of the tasks, say, that an aide can perform, does that also mean that, say, they're more conservative about the tasks that a nurse practitioner can perform relative to a physician? Do they track together like that?

Joanne Spetz:

They track a little bit, but not perfectly. I think there is a little bit of tracking at least on the aide delegation on presence of different unions. In some states the delegation has... Some of the advocacy for broad delegation has actually come from places where there are very strong unions that represent aides.

Like Washington State, really, it's very forward-thinking what they have in their regulations. They have for their Medicaid-funded programs a gradated set of training requirements for home care aides. There are pay bumps that aides get for attaining more advanced competency and skills in their areas. And there's pretty broad delegation authority with the idea of trying to professionalize that workforce and respect the deep skills that they bring to the table.

There are a number of states in contrast where the stronger unions might be the registered nurse union and delegating tasks to the aides become concerning for two reasons. The publicly stated reason is usually around the nurse taking on liability for delegating to somebody who might not really be qualified to do the thing. And then, is that going to come back around to the registered nurse as a risk to their licensure and them taking disciplinary action because the aide messed something up? The argument is very much around the consumer safety and how do you verify really that the aide is qualified to do this, et cetera.

I think also a subtext is that the less aides can do, the more that licensed nurses do. Because if the aide can't administer any medications, the home care agency now has to send an LVN or an RN to do all the medication administration. So, there's a bit of job protection that you often see with the union arguments. Similarly, the aide unions are advocating in a way that gets them more jobs. You tend to see that, which is a little bit distinct then from the history with nurse practitioners and physicians.

Donovan Maust:

Since this is after all the podcast that's related to dementia, I wanted to just get into two specific questions looking at the intersection of workforce and dementia. First, I guess, are there specific and unique ways that you think about workforce issues as they're related to care of patients with dementia? Then, you mentioned workforce shortages a moment ago. Do you think that dementia... Are there special implications of workforce shortages specifically for patients with dementia?

Joanne Spetz:

I mean, for the workforce that is serving people living with dementia, the biggest number will be the direct care workforce. Many of those individuals are working in people's private residences, in their homes. They work in assisted living. They work in nursing homes, and sometimes in home health, which home health tend to be a shorter duration of visits.

For those aides, there are a lot of specific skills related to caring for somebody with dementia around managing their symptoms, responding to different behaviors that the individual might have that are associated with their dementia, reassurance of the individual, which may be a different set of tactics and approaches you would use versus somebody whose cognition was really good. Some people learn a lot of that skill on the job, and some of that really benefits from specific education and training.

I think that probably is also true for registered nurses. In the hospital, as we are seeing more and more older people in our population within the hospital setting, more and more patients are likely to have dementia. You add to that all of the other complications that come from somebody being post-op, and out of it, and delirium risk, and so on, add to that a good layer of dementia and the care in the hospital can become very complicated. That is not part of garden variety nursing education.

I think the same is true for primary care. A lot of primary care providers probably get some exposure to it. But as their population of older people and the oldest old with the greatest risk of dementia is rising, they don't really have that knowledge.

Then, I just saw the latest specialty match rates on some of the specialties, and geriatrics was at the bottom of the matches. In the physician workforce, we absolutely do not have enough people with the geriatrics expertise, which is really where you would get that dementia expertise, along with neurology and psychiatry. But, the front line should be geriatricians, really, and we don't have nearly enough of them.

There are a lot of interesting programs that are trying to tackle what is likely the reality of you will never have enough geriatricians, so how do we need to educate everybody else, especially primary care providers, general internists, and family medicine providers, and general nurse practitioners, to fill the gaps and to have the knowledge that they need to manage this as we see rising numbers in the future. It's a similar discussion across all the different workforce groups about how do we deal with that.

Shortages just exacerbate the problem, especially with home care aides. That's a occupation where there's constantly complaints about a shortage. A lot of the settings in which they work are pretty financially constrained. Nursing homes are very dependent on Medicaid and the ability of families to privately pay. We know from all kinds of analyses that families do not have enough money to pay for very many years of nursing home care or even assisted living care. Medicaid tends to not pay very well for it, so facilities are somewhat limited in their ability to raise their rates and pay their staff more. That's not necessarily a great excuse, but when the wages are low and the work is stressful and difficult, honestly, there are a lot of people who find a better career path and more opportunities for upward mobility working at In-N-Out Burger in California. I think the starting wage at In-N-Out Burger right now is probably higher than most home care aides get.

Matt Davis:

Many of our listeners don't come from a medical background. I'm just curious, for medical physicians, you mentioned shortages of primary care and geriatricians, how is that regulated? I mean, does a professional organization decide how many they're going to produce for the market versus just the decisions of medical students having choose different specialties based on their interests and income potential and all that?

Joanne Spetz:

Ooh. It's really an intersection of those things. The number of spots for residency training are partly determined by money that mostly comes from Medicare for graduate medical education. But, it also is somewhat driven by the fact that a resident services can be billed to insurance because they're providing a service. It should be billable. That tends to shift or increase the slots available in the specialties that have the highest billing rates or billing opportunities.

Interventional cardiology always seems to have a lot of residency slots available, and that's because interventional cardiology procedures reimburse really well. Family medicine, each visit, comparatively, reimburses not so well. Without relatively more federal funding, and federal supports, and state government supports in some cases, you don't see those programs really growing.

OB-GYN's another specialty area where you just don't see a lot of growth in the number of slots available because the funding from the government agencies hasn't been rising, and then there's really not enough money in it to encourage an academic medical center to add more residents.

So, that plays part of it, and that is correlated also with medical students' interests. Medical students are often coming out with a lot of debt. They're also typically coming out of academic medical centers where the culture tends to favor specialties. It's a lot more fun to talk about like, "Ooh, cool, did you see the new science in blah, blah, blah, and this new procedure for this really complicated oncology care that didn't exist before?" That's super cool stuff. And if you're in an academic medical center for four years and are exposed to that all the time, it's no wonder that that piques excitement of people.

There's data that the percentage of people entering medical school that say they want to do primary care at the time they're starting versus the percentage that say that they want to do it at the time they're graduating, there's huge attrition. People get excited about specialties in other fields and get siphoned off into those other fields.

Then, some of the subspecialties, like geriatrics, where you tend to have and need to have longer appointment times, evaluation and management's more complicated, so you don't... You really can't do geriatrics on 10-or-15-minute appointments all day for eight hours a day. That's one of those specialties where for the extra year of training that you do to become board certified as a geriatrician, you actually will probably have a pay cut when you're done with it. During that fellowship year, you don't exactly get paid very much money while you're in that training. So, it really is a big deterrent to people pursuing a lot of those specialties.

Neurology has some of that same problem. Pediatric neurology is apparently one where there's almost always a shortage because you just get paid a ton less after doing all of this specialty fellowship work. There's a lot of advocacy or discussion around the need to reform the graduate medical education system. I would certainly defer to some of my colleagues at... Like Erin Fraher at the Sheps Center at University of North Carolina has a ton of knowledge about that. At some point, I'm like, "Okay, you burnt out my expertise. Go talk to Erin. She knows everything."

Matt Davis:

And it must be a very different story with nurse practitioners compared to physicians in terms of the workforce and [inaudible 00:31:48].

Joanne Spetz:

Yeah. Nurse practitioners are... That's an interesting space because there are some residencies, but it's not required, really, as part of the profession. The programs are generally built out of registered nursing programs. It's a master's degree. Although there are now some doctoral entry programs that are a practice doctorate called a doctor of nursing practice, and those are three years, the... Part of the reason those programs can be fairly accelerated is that you have to be a nurse to enter the program. So, you're already a registered nurse. You often have done practice for some number of years, so you have some feet under you clinically speaking. You've taken basic pharmacology. You've taken a lot of that content already. You're building on from what is already a clinical basis of knowledge, which is a very different mode of educating somebody.

Then, the nurse practitioner programs are also specialized from the beginning. you specialize as a family nurse practitioner, or an adult gero nurse practitioner, or pediatric, or psych mental health, or acute care. You kind of pick your field from the beginning of your NP education, which is really different than medical education where you come out of a generalized bachelor's degree. You had to take pre-med. You had to suffer through organic chemistry, which is not easy. You go to medical school. You're trained as a generalist. You are trained in medical school to pursue any of the specialties. So you'll sit in on surgeries, you'll read path slides, you'll do a rotation through radiology, you'll do all of those things, and then you decide what you're going to specialize in. Whereas for the nurse practitioner, they're like, "I don't need to sit in on surgeries. I'm never going to do a surgery. I'm going to do primary care." It's a much more direct and streamlined education pathway.

And that's where I think the comparison that sometimes the medical groups will have... On physicians did all these many more years of education. It's like, "Yeah, but a lot of that education was nice to know, but not actually directly going to be related to their practice when it comes down to it." Nurse practitioners are more streamlined in that education, and therefore there might be some random things that they don't know. You get the random patient where they have some syndrome that's really rare and the medical person is going to have more likelihood that maybe they've heard of it or seen it. But for probably 90 to 99% of the care you would do in primary care, it doesn't matter. At least that's what the data show very clearly. The argument of one group has more years of education is not the same thing from a human capital perspective of how did they develop their knowledge and skills in order to do what they do.

Matt Davis:

I say we need to lock in the medical students. Anybody that says primary care in their application has to become primary care. We lock them down. That's it.

Donovan Maust:

Good luck with that.

Joanne Spetz:

Yeah. There is a really cool study that Kevin Grumbach, who recently returned to their faculty from being the chair of Family Medicine at UCSF... And he was one of my mentors. He looked at this program that is connected to UCLA that was with the... It was kind of the King Drew medical program. It was a cohort of UCLA med students who were going to do their training, or a lot of their training and rotations, at King Drew Medical Center, which is basically on the border of Watts and Compton and serves a low-income population and it's primary care focused.

Not surprisingly, the people who picked the King Drew program were more likely to say they wanted to be primary care from the get-go. But also, their training was all around general medical school, but focused in their rotations more on primary care and more on an underserved community. When they looked at the data, the traditional students dropped their primary care interest at a much faster rate, and they started lower than the King Drew students. More of them were retained. I think that was just exposure of the way the program was organized.

I think that is something where if a person is really interested in primary care, they should think about picking a program like a medical school where primary care is celebrated and highly valued, and that will be something that's reinforced throughout their education. That really increases the probability that they'll be excited about staying in it. But if they go to a big academic medical center where the emphasis is very much on specialties and the specialties are all the cool people, then they are much more likely to choose a specialty in the end. It's not surprising.

Donovan Maust:

I'll just echo that from personal experience, is that in picking a specialty in medical school is actually really hard because what you're exposed to as a medical student in most places is so hospital based. If you're at a tertiary quaternary academic medical center, you're seeing these super rare, highly complicated things. You have just such a sort of skewed exposure to the actual world of medical practice out there that it's totally not surprising that medical students come in thinking they want to do one thing, and then on the basis of what they get exposed to, in particular the sort of high churches of academic medicine, that they change their mind and they end up going into something else.

Joanne Spetz:

And add to that $200,000 of medical debt, medical school debt, and it's like, "Oh, gee. I could pick primary care and make a third of what I will make as a cardiologist, or dermatologist, or oncologist, or something else." How much more of a pay cut are you going to take if you practice in the public sector? That just kind of adds insult to injury as it were.

Matt Davis:

Often with our guests we talk about different types of data they use for their work. In your article, the one we just talked about a little bit, you used human resource records from a multi-state home health organization. That seems like a really unique data source. We're sort of curious, how did you go about getting access to those data? I guess furthermore, for folks who are interested in exploring workforce research a bit more, are there other data sets that they should look into as well?

Joanne Spetz:

That data set came about, as I understand it, from Guy David who's at the Wharton School at Penn, had a student, or former student, who ended up at this multi-state home health organization. They had a number of workforce-related questions around retention, turnover, recruitment, improving the matching between the staff and the clients and so on. She was like, "I'll bet my former professors at Penn could help us answer these questions and they could also do some cool research at the same time, and we could come up with a data use agreement that made us all happy."

That relationship all came from Guy David, as I understand it. Somewhere along the line, he and I were chatting, I think at a conference. Then, later he approached me and said, "Hey, we've got this idea for this project. What do you think?" The first paper we did was looking at the volatility of staff schedules and found that when staff had greater degrees of schedule volatility, they were more likely to turn over. They were more likely to quit." We.

Did that out of our health workforce research center because we already had the data set. There were already programmers who knew how to use it. We were able to establish a subaward with Penn to have some of their faculty help support the project. Also, I hired part-time a research assistant who'd been working with Guy remotely who actually lived in Oakland. Got to start working with her, which was a lot of fun. That paper that you pointed out was the second paper from that project.

Finding relationships and hunting down good data sources is a lot of luck, but there are a lot of really good public data sources that people work with frequently that people have done a lot of research that leverage Medicare claims data. And you're seeing more and more work with the Medicaid data, especially now with the new T-MSIS data. I couldn't tell you what the acronym stands for. T is transformed. Transformed Medicaid, something something.

Donovan Maust:

State maybe?

Joanne Spetz:

Something, yeah. Information probably. But that data has been an effort to harmonize better the different state Medicaid datasets so that they can be brought together more effectively for research, and we're seeing more and more people begin to use those data. I know Tamara Konetzka at Chicago's been doing work with those data. Then, you can get various linkages with taxonomies of which kinds of providers are doing what in using those claims data.

For more general supply-and-demand-type issues. People typically will look at products from the Census Bureau, like the American Community Survey. Bureau of Labor Statistics does the CPS population survey. Current population survey, that's what the C stands for. Those agencies have a lot of different sources.

Also, National Center for Health Statistics has this national post acute and long-term care study. Two of the modules of that are surveys of assisted living in residential care facilities, and then adult day health services centers. Those have some questions about, as well as the services and the demographics of the client population and so on. We just published a paper using the adult day services module looking at staffing differences between programs that have high populations of participants who have dementia versus low rates of dementia in their population.

There's a number of different datasets that you'll see people use, but I think a lot of people end up being very reliant on doing more exploratory work or doing qualitative research because the data sets don't often have the subtlety that you want to have to understand more about what's happening with the training in the workforce or what levels of burnout do people have. Well, that's not in the American Community Survey. That's not even in the NPALS data that I mentioned. It's a lot harder to get that detailed information about the experiences of workers who are in these fields.

Matt Davis:

There's a big HRSA nursing study, right? There was one kind of old.

Joanne Spetz:

Yep. The National Sample Survey of Registered Nurses. The new version of that should be released any day now from the 2022. They did the first one in 1977, and then they did the next one in 1980, and then every four years through 2008. Then it was discontinued for 10 years and relaunched in 2018.

I did the first chapter of my dissertation with that data a long time ago. That's a great data source. It goes back over time, so you can look at changes in patterns of employment, and stress, and education, and all kinds of things over a long period of time. The new version will come out any day. And it's free. You can access most of the variables in the public use file, but there are some variables to get to them. You have to access them through the Federal Statistical Research Data Centers that are a program of the US Census Bureau. I'm happy to share information about how to get into the FSRDCs and some of the benefits and some of the issues with the National Sample Survey of Registered Nurses. I was really glad when they relaunched it. It was a huge gap for 10 years that we didn't have it.

Matt Davis:

I didn't know a new one was coming out. It's coming out just in time for the holiday season.

Joanne Spetz:

Well, hopefully. The government shutdown was going to put that at risk. But yeah, it should be out maybe in time for holidays. It might be your New Year's gift, but it's coming soon. I know we're planning for our workforce center project to do an analysis, kind of an updated analysis, of the nursing workforce in long-term care and revise and update some work that we did in the past. We're planning to do that in the Statistical Data Center over at Berkeley because a couple of us on our team now have the... We are officially sworn officers of the Census Bureau, which means that-

Donovan Maust:

Fancy.

Matt Davis:

Wow.

Donovan Maust:

... if we release anything that we're not supposed to release in terms of confidentiality, they can fine us hundreds of thousands of dollars and put us in prison, as they should because the privacy of these data are very important, and people don't answer these surveys if they think their identity's at risk. We take that very seriously, being able to access that microdata.

Matt Davis:

We're so trained to protect research participants' data and patient data, I've always found it kind of interesting that when it comes to claims the provider data isn't necessarily protected. I mean, you can see what providers do in public data sets and things like that in terms of what they prescribe and their patient panel, that kind of stuff. I always thought that was kind of strange.

Joanne Spetz:

Yeah, it is interesting. A really interesting counterpoint from a research standpoint is some countries have just these fantastic data systems where you can look at the equivalent of the claims or the encounter data and link it with all the human resources data. I think there was somebody in [inaudible 00:47:27].

Donovan Maust:

It's like Scandinavian countries.

Joanne Spetz:

I was going to say it was Norway or Denmark or something where there was just this fantastic research because it's a national system, so they know exactly who all the nurses are. So if you want to look at what the nurses are doing in the hospitals and what their training is, and then how the patients turn out, they have got the best data sets. I'm so jealous.

Donovan Maust:

There are all these amazing psychotropic studies that come out of Finland because they have this amazing national registry, and the data's amazing, but anyways. Joanne, we're almost to the end of our time together. We were teed up really quickly and can't let you go without mentioning this new project that we're working on, the National Dementia Workforce Study, or NDWS. Since you are our guest today, do you want to just quickly say what it is that we're up to with that project?

Joanne Spetz:

Oh, yeah. This project is really exciting. It's very complicated, but that is part of the fun for it. The National Institute on Aging put out a request for proposals to do a five-year, very big scope study of the dementia care workforce broadly defined. Broadly defined would be everything from the aides through the physicians. What we are doing with this is a partnership with University of Michigan being the lead and you being the PI on record of the person who has to handle more of the paperwork than I do, is that we've got four different surveys that we're putting together as part of this overall study. Each of those surveys is intended to be linked with encounter data, or claims data, or other institutional and organizational data so that people can get this really incredibly rich linked data set to study a gazillion different things about how the workforce is serving people with dementia.

As an example, what I jokingly call the easy survey is going to look at Medicare and Medicaid claims to identify people with dementia who have that in their diagnoses, and then attach them to the people who have taken care of them, build Medicare for their services, and identify from those the primary care providers, so geriatricians, primary care, family medicine, internal medicine, nurse practitioners, PAs, etc. Identify those individuals, select a sample of those clinicians, and survey them about their knowledge of dementia care, their perceptions of maybe different regulations or different new treatments that are coming online and other factors that might influence their practice, challenges they might face around getting specialist referrals, how their team and their practice operates. Do they have care navigators? What's in their practice to help support them? That survey data then can on its own be really interesting, but it also then can be linked back to the claims for the people that those clinicians have seen over whatever time period.

Some section or some subgroup of those clinicians we'll survey again in two years in addition to bringing in a new group of clinicians that are new to the survey in two years. There also will be surveys of people who work in nursing homes. That'll be primarily the licensed nurses and the aides. The nursing aides Will be the biggest number. Assisted living facilities, which we expect to be probably some kind of aide and/or activity staff, those roles are not always super cleanly delineated in the assisted living setting.

Then, the fourth survey is going to be of home care workers. That one I dubbed the problem child of the surveys. It's really difficult to figure out how it is that you're going to find home care aides. I think the reality is that the first cycle or two of the survey is going to be fairly limited to people who are working through agencies because how on earth you find people who are being hired directly by families is almost impossible to figure out how you would do that. It'll be mostly agency-employed people. But I anticipate that when we resurvey people we're going to find a bunch of people who used to work in assisted living, or nursing homes, or agencies for home care who now in the next year are working independently, and also who have left the labor force entirely, or might be caring for family members, or might've gone back to school because their dream is really to become an LPN.

I think it's going to be really interesting to look at the turnover year to year, as well as the knowledge, the skills, the stresses, the factors that keep them in their jobs and make them feel empowered and appreciated, and then how does that all connect back to the care that the people that they're serving receive, and can we identify measurable outcomes that we can trace. Lots of questions.

Donovan Maust:

Lots of questions. Bottom line is we're creating a big, new data source for users who are interested that'll be available for free with potential to do lots of cool things that we hope you do, along with the annual cycle of research funding to fund pilot studies for people to use the data. Please stay tuned and be on the lookout as we have data available for you all to use.

Joanne Spetz:

And there should be data available. Probably not much more than a year from now, there should be some preliminary data out there for the first round of users to start playing with.

Matt Davis:

Is there going to be a call for funding opportunities in half a year or something?

Donovan Maust:

Yeah. Yep. Exactly.

Joanne Spetz:

Yes, there will. Soon there will be a formal website for the project. Right now there is a stub of a website that is primarily to get feedback about ideas for survey question domains. We've received a lot of responses so far, which has been fantastic. But there will be a bigger website and a mailing list and all the other things that one would expect that we will do. There will be a call for proposals probably around, I think, May, April, May, somewhere in there, after the survey questionnaires are finalized so that people know what they could potentially propose to do with the data when it's available.

Matt Davis:

We'll make sure to put the website in once you have it just so it's attached to this podcast episode.

Donovan Maust:

It's ndws.org. It's there live now whenever this episode is released. Either it will still be the temporary page or it will have been replaced by the real one. But it's actually live and up there now, just so we have sort of marked our territory and have the domain name registered to us.

Joanne Spetz:

Yep. That's right. It redirects to the stub of a page that's living elsewhere.

Donovan Maust:

Our temporary home. So, okay. Thank you, Joanne, for that tour de force of workforce research to help our listeners get up to speed a little bit. We really appreciate you joining us.

Joanne Spetz:

Thank you for having me.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website, you'll also find links to our seminar series and data products we've created for dementia research.

Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlenga.com. Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at uofmhealth.org/podcast.

Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon.