Delivery of Care

The art of coordinated health care when it comes to children

An interview with Dr. Patricia Flanagan, co-director of PCMH-Kids, about the challenges of coordinating health care for children and families, and why it requires a different approach than with adults, focused on longer-term savings

Photo by Richard Asinof

Dr. Patricia Flanagan, the co director of PCMH Kids.

By Richard Asinof
Posted 10/8/18
In the last three years, PCMH-Kids has built a new initiative to better coordinate care for children, now serving roughly half the kids in Rhode Island. But its model is built on a different approach than adult care, requiring longer-term investments that do not yield short-term cost savings. An interview with co-director Dr. Patricia Flanagan explores the challenges in building a sustainable model that treats the child as a whole person, focused on investing resources in care coordination that supports families and children.
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PROVIDENCE – In the last three years, since the launch of PCMH Kids, an all payer initiative to support better coordination of care for children and families in Rhode Island, based in part on the work that has been done by the Care Transformation Collaborative around primary care, the difficulty has been to keep the focus on understanding the differences between adults and children in health care delivery, according to Dr. Patricia Flanagan, a pediatrician who is co-director of PCMH-Kids.

There was a lot to be excited about, according to Flanagan, in terms of what the PCMH-Kids has achieved in its first three years.

In a recent interview with ConvergenceRI, Flanagan spoke first about what she called the amazing success of PCMH-Kids: “It is an exciting time; our first cohort of nine practices are in the third year of their contract; they finish on Dec. 31. We started a second cohort in July of last year. And, we have an expansion application out now to recruit another set of [pediatric] practices to join us. We now have almost half the kids in the state enrolled in PCMH-practices.”

In addition, the PCMH-Kids practices are doing care coordination with nurse care managers for kids with complex cases, working with social workers and parent consultants. PCMH-Kids has also submitted a grant proposal through the R.I. Department of Health with the federal Health Resources and Services Administration to connect the family home visitation programs with the PCMH-Kids practices.

“If we get the grant, we will have a structured way to help practices connect with the home visitors,” Flanagan said. “These are people who go into homes, develop relationships and collect information and can share in the coordination of care.”

In addition, Flanagan believes that the PCMH-Kids practices could be very helpful in resolving the chronic absenteeism enigma in early years of schooling.

But, unlike with the all-payer Care Transformation Collaborative for adults, where costs savings are realized in the short term by focusing on better coordination of care for chronic diseases and reducing the so-called “hot spots” in utilization as a way to reduce the high costs associated with emergency room visits, the savings with PCMH-Kids are more long-term in nature, and the investments in care coordination do not result in immediate savings that fit well within health insurers’ projections of risk and return on investment, according to Flanagan.

First of all, she explained, “Kids are 8 percent of the entire health care budget in this country. We’re talking about a relatively small amount of dollars to start with. And, when you look at children who are the high utilizers of health care, those who were high utilizers this year are not necessarily the high utilizers next year. It’s different than adult medicine.”

Investments may not pay for themselves in the short term
Leading up to the launch of PCMH-Kids three years ago were a series of weekly meetings involving as many as 35 stakeholders at the table, that continued for 18 months, the kind of process-oriented work that Flanagan admitted she had some resistance to, initially. “I’m not a process person,” she said, candidly.

But, at the end of those 18 months, Flanagan continued, there was a basic understanding reached about the importance of looking at the coordination of care for children in a different light than with adults.

“When we looked at doing care transformation for kids, understandably, the insurers, at that time, who were at the table, didn’t quite see what was in it for them to make the investment in kids,” Flanagan said. “They were not spending a lot on kids; they were not going to save a lot on kids; and they were certainly not going to save what it takes to do good care coordination for kids by investing in this.”

Part of the value of the 18-month run-up in the process to PCMH-Kids, Flanagan explained, was that it was important to get buy-in and agreement in concept. “I will say that it has occasionally broken down, when it comes to investment of dollars in the care coordination and high quality [delivery] of children’s health care that we would be performing, [and the understanding] that it would be population-based, [meaning] that we were accountable for all of our kids, that it would be data-driven and team-base cared, but it wouldn’t necessarily be chronic disease management.”

And, Flanagan added, “It wouldn’t necessarily fund itself in the short term.”

The problem with investing in child health, she explained, is that the benefits are several years down the road, certainly outside the political cycle.

Flanagan put her finger on the larger issue of investment strategy in children’s health: “If you invest in high-quality care for kids that includes screening for social and emotional challenges in toddlers and early learning problems in three- and four-year-olds, and you can get them into services and you can present their needs for special education, or you can intervene with families early on around parental support and challenging behaviors, and you can keep DCYF out of that family, you are saving a lot of dollars – but not from the health care system,” Flanagan said.

In other words, she continued, “Not only are we distant in time with return on investments in our health care savings, but we are in other people’s pockets. Keeping the whole [enterprise] funded is tough.”

In contrast, Flanagan said, “The adult model of care transformation approach to the Triple Aim is about fueling change with dollars that you save in the short run.”

Translated, Flanagan continued, “If we take care of diabetes, right now, if we do a better job of diabetes education, [monitoring] A1C and blood pressure in our diabetics, and teaching foot care, than we will save enough dollars in emergency room visits and hospitalizations to fund the resources it takes to do that good care coordination.”

In essence, Flanagan said, “You have a self-fueling kind of engine. You save initially, but at some point, you can’t save anymore, even if you are doing a really good job.”

The strategy is to use the short-term savings from high-end care to support the necessary supports for better care coordination. The larger question is: what happens when the short-term savings get used up and the medical costs of care continue to increase?

Here is the ConvergenceRI interview with Dr. Patricia Flanagan, co-director of PCMH-Kids, talking about care integration and coordination for children’s health in Rhode Island, from an inclusive perspective of population health.

ConvergenceRI: When we talked at the 2018 Health Equity Summit, you mentioned that you were considering a proposal involving storytelling in health care, but had difficulty in securing funding for it. What was that about?
A few years back, we did a small study in our clinic, interested in finding out more about a sense of place and health. We asked people to define their neighborhood. We put a map together of mostly Providence, and we asked our patients to highlight their homes and then asked them to draw a circle around their neighborhood.

There were people who just drew a circle around their home as their neighborhood. We had very few people who actually fit into the boundaries as what are typically designated as neighborhoods – the West End, or Olneyville.

We then asked: within the place that you drew as your neighborhood, where is your childcare, where do you go see the doctor, where is your hospital, and where is your church, if you go to church.

I don’t think that anything came of the study, other than a better understanding for us of how diverse the notion of neighborhood is. And, as people interested in health and the context of health, we are used to talking about neighborhood resources, neighborhood events and neighbor community-building.

That is a concept that means very different things to very different people. That, to me, was the interesting result of that exercise: what are we talking about when we talk about neighborhoods?

ConvergenceRI: Does that mean that we need to develop a new vernacular for what is a neighborhood? Or, where we belong?
Perhaps. But I don’t know if we ever had it right with neighborhoods. I think we sort of have this 1950s American view of neighborhood. But I don’t know if that was ever real.

Maybe it was. Maybe when people went to neighborhood schools, that was real. But certainly, in my lifetime, I don’t think it was real.

It’s been a while since the notion of “Leave It To Beaver” neighborhoods was a thing.

ConvergenceRI: In this week’s issue of ConvergenceRI, I wrote a story about a new study by Barry Lester about the role of breastfeeding and his findings how that was related to epigenetic changes in the brain related to how an infant responds to stress.
I don’t know the study. But it would make sense to me that there are truly hormonal things that happen both to the mother and the baby with nursing that would be helpful and healthful.

It could be one more reason to support breastfeeding mothers.

On the other, I think it may be a little bit simplistic to think that you can fix the toxic stress environments of our families simply by encouraging mothers to breastfeed. I think that may underestimate how stressed out our families are.

ConvergenceRI: Also at the 2018 Health Equity Summit, in a discussion around maternal health, there was a question raised about the alleged discharging of young mothers and their infants into the parking lots at the hospitals, which sparked a heated conversation. The larger question is: what happens to young mothers and children who are discharged back into stressful, unhealthy environments after giving birth?
For me, this has long been a really important issue, dating back into the mid-1990s, when I had some funding from the March of Dimes to put together a program to support teen parents with babies in the NICU [neonatal intensive care unit].

We do not bat an eye about investing hundreds of thousands of dollars, or millions of dollars, to save a 23-week-old baby. I think that’s great. I think that is wonderful that we have these medical advances, and I don’t mean to do them a disservice at all.

But, I think we have a much harder time investing in families and young children once they are out of the NICU, or before, so that they don’t have to go the NICU.

I think we’ve come a long way since the 1990s when it used to be a lot worse. Dr. Betty Vohr has a great program that bridges babies to the home, which certainly recognizes the mental health needs of mothers, addressing the concrete resource needs of young mothers.

However, I think that we have taken an approach to medicine in this country that is much more willing to fund personalized, expensive, cutting-edge kinds of medicalized [interventions] and not the things that we already know make a big difference, but are less sexy, in the traditional realm of medicine.

We do not support high-quality early care and education the way we should. We don’t support child health care the way we should. We don’t support maternal health the way we should. Pregnancy is a really important time.

There are some really important studies out of Canada that show that by giving unconditional dollars to a pregnant lady, not a lot of dollars, it was maybe $100 a month, they were able to drop their premature birth rate drastically.

We know that so much of our health [outcomes] is impacted by the stress that many of our families live in. Half of the children in this country are poor or near poor.

We know that so much of health is impacted by the stress that many of our families live in; half of the children in this country are poor or near poor.

When you look at Providence, where 40 percent of our kids are under the federal poverty guidelines; families are living in substandard housing, in poor neighborhoods, on unsafe streets, they’ve got food insecurity, they’ve got housing insecurity.

You’re asking young parents to be emotionally available to meet the needs that an infant or a toddler has. How do you do that?

ConvergenceRI: Switching gears a bit, storytelling, I believe, is one of our most valuable possessions we have as humans.
I think you’re right. I think it’s a really important part of how we communicate with each other.

ConvergenceRI: How is storytelling an important part of the relationship between caregivers and patients, creating a sense of shared trust?
I first explored the notion of storytelling as part of medicine in a conversation with Daniel Kertzner at The Rhode Island Foundation, some years back.

I was grappling with an ongoing scholarly conversation with some Brown medical students about advocacy and physician activism, trying to give skills to people who were in the thick of medical school.

I had known for a long time that there is a balance in advocacy. You certainly need to have your facts straight, and have the right kinds of data. But tying it to story is always what makes it real.

One of the privileges we have as physicians is hearing people’s stories. Part of being a good advocate is recognizing, sorting them, and collecting them, recognizing that what you are hearing is a really powerful example, as a way to illustrate the point you want to make.

In that context, Dan and I sat down and were thinking about the importance of how we could help people in medicine become good storytellers.

In order to become a good storyteller, you had to become a good listener. That was how we were starting to work together; we put together a couple of proposals, but we never got funding to do them.

I still have this idea, that at the core of good health care, and at being a good pediatrician, physician or nurse care practitioner or health care provider, is being a good listener of stories.

That [process] is all about establishing a good relationship with your patient as a whole person, and not the disease that they bring and sit in front of you with.

Storytelling and story listening are really important skills to develop [for a health care professional].

ConvergenceRI: I often recall that moment, some six years ago, when Dr. Doug Eby from Alaska was presenting at the Warren Alpert Medical School about patient-centered medical homes, and the instructions that he gave his providers: they needed to learn to listen in 10 different ways.

The second important moment at that event, was your revelation, as they were talking about patient-centered medical homes for adults, and you, sitting behind me, said out loud: “Why can’t we do this for kids?” And that became the genesis of PCMH-Kids.

The third “revelation,” for me, was that the fact that no one in the room seemed to get what Eby was saying. They all seemed stuck in their own silos, and in their own projections of themselves, that they were the doctors, and they defined the practice of medicine. It became one of the factors why I launched ConvergenceRI.

The way that doctors often talked about medicine, it brought to mind the poem by W.H. Auden, “Law, Like Love,” the way that judges talked about the law:

Law, says the judge as he looks down his nose,
Speaking clearly and most severely,
Law is as I've told you before,
Law is as you know I suppose,
Law is but let me explain it once more,
Law is The Law.

FLANAGAN: That’s right. [laughing]

ConvergenceRI: Three years ago, there was an effort underway in Rhode Island to develop a screening mechanism for pediatricians to identify toxic stress in parents and children, but that effort apparently fell off the cliff, in part because it was said that there were no interventions that were appropriate. Why do you think that happened?
I think that for the whole toxic stress movement, if you will, kind of got lost in understanding that the original work was done on adults asking about their childhood experiences.

When we talk about screening for toxic stress in children, we’re talking about a very different thing. I would argue that we don’t need a screening tool to identify toxic stress.

I work in a place where the kids are poor, the families are stressed; I don’t need a screening tool to say that this is unhealthy and it is building a bad foundation.

What I need are the resources to intervene with families and support them.

ConvergenceRI: What would those interventions be?
I think housing in this state is a huge issue. I think housing for pregnant and parenting people is a huge issue.

ConvergenceRI: And, after mothers give birth?
Absolutely, after they give birth.

ConvergenceRI: Could hospitals invest in housing?
I think that would be awesome. It’s certainly happening around the country. But I don’t think we are close to that here right now.

I think housing and health are so closely tied. You look at [the correlation between premature births] and homeless women and it’s huge. I think that homelessness in Rhode Island is pervasive; think of the number of families that are doubled up, living on couches, moving here for a month, there for a month with their children, because they can’t afford the rent.

Food insecurity, it’s a big issue, especially in the summer [when kids are not in school]. Every week I see families who had their SNAP benefits cut in half for no reason, or disappear, even though I think [the administration of] UHIP has improved.

There isn’t a sense of urgency that these are hungry families, these are hungry kids.

These are basic human needs that are not being met.

Children are dependent; they are dependent on caregivers, their mom and their dad. Keeping that unit healthy is important, especially in mental health for new parents.It’s a big, big issue.

Kids are also dependent on community, on agencies, and government agencies, not the least of which is schools.

To have a healthy child, you need all of these systems working together.

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