How to Rethink Population Health Management for Rare Disease Care

December 22, 2020 - About four and a half years ago, Chris Carlson, senior vice president of customer experience and complex health solutions at UnitedHealth Group, had a significant conversation with his colleague about a patient with a rare disease. That conversation would help to redefine the way UnitedHealth Group approached rare disease care.

Tom Kelly, vice president of marketing and innovation at UnitedHealth Group, had a son with a rare, genetic condition. In his conversation with Carlson, Kelly expressed genuine frustration with the healthcare system that was supposed to help his child.

Kelly’s experience was not an isolated one.

There are more than 6,800 rare diseases in the world, according to the National Human Genome Research Institute. Between 25 million and 30 million Americans suffer from a rare condition.

"When you start to look at those numbers, juxtaposed against the fact that the healthcare system really is condition-oriented, the whole person gets left behind and, more importantly for those families, the entire family is suffering as a result,” Carlson explained to HealthPayerIntelligence.

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Starting in the 1960s, the American healthcare system has developed based on fee-for-service healthcare which relies upon codes assigned to each condition. These codes can be used to stratify patients for population health management.

Rare, undiagnosed, and complex diseases, however, often do not fit easily into this coding system.

Families with a child who has a rare condition will bounce from provider to provider—often starting with academic centers—looking for solutions.

“For the families, it's often an overwhelming feeling of complexity and overwhelming administrative barriers,” Carlson explained.

“There's no interoperability between specialists or systems, so if you go to doctor A in a different system, you download everything, you bring all your records, you bring all your papers, your files—and then they can't help you. Maybe after a couple of weeks of going there, you look up and find that doctor B or healthcare system B is better. Then you start from scratch. It's exhausting.”

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As a result, families of children with a rare condition often forego their own behavioral care, mental healthcare, and primary care needs as they focus on finding a cure for their children.

On top of their healthcare demands, families also shoulder mounting healthcare bills, driving them toward bankruptcy.

Half of all Americans who have ever been uninsured or underinsured report that they have had medical debt or struggled to pay medical bills. In the face of that trend, almost six in ten caregivers for patients with a rare or complex disease (59 percent) say that they have exhausted their personal savings.

As vice presidents at one of the nation’s major health payers, Carlson and Kelly knew that payers have a role to play in preventing this spiral. They developed the Family Engagement Center with the aim of filling the gap into which rare disease patients and their families often fall.

As their team untangled population health management for families with a child who has a rare disease, Carlson noted three strategies that aided the team’s efforts.

Rethink rare disease member identification

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First, the team redesigned its identification strategy for this patient population.

Due to the challenges of tracking individuals whose diseases often do not fit into coding categories, the Family Engagement Center had to use another solution—both technologically and algorithmically—to identify families with a child who has a rare disease.

Some payers use high healthcare spending to find patients with complex conditions, but Carlson said that this only fills in one part of the picture for patients with rare and complex diseases.

“The reality is that you need to look at both ends of that identification capability to identify, not just people who are spending money, but people who are spending money in a frenetic model,” Carlson explained.

Looking at primary care services utilization alone, patients with rare diseases were 52 percent more likely to be referred to another provider than a patient without a rare condition, a BMJ study found.

When the Family Engagement Center identifies a patient with high spending who is bouncing around the system, they take this as an indicator that the patient may have a rare disease.

After filtering through claims for these characteristics, the team takes a look at the patient’s clinical information and may contact the family to see if they need the Family Engagement Center’s support.

“We have a population of folks that hit our triggers and when they hit a trigger and call, we automatically engage them,” Carlson stated.

Redefine member engagement for rare disease patients, families

Second, the team had to rethink engagement with families whose child has a rare disease.

The industry’s dialogue regarding member engagement often centers around how to get members more involved in their own health.

But for those with family members who have a rare disease, the problem is not that they are disengaged from the healthcare system.

In fact, nearly nine in ten caregivers for patients with rare diseases (89 percent) reported that they have to educate healthcare professionals about their patient’s condition. These caregivers invest a lot of time meeting with providers and researching healthcare topics to find solutions for their family members.

“The reality is: for those who are in a state of mind or in a condition that's complex or rare, they don't have an engagement problem. The health system is incorrectly engaging them,” Carlson clarified.

To reform member engagement with families with children who have rare diseases, the UnitedHealth Group team had to reorganize themselves internally and change the way they connected to and spoke with members externally.

The result was what Carlson calls an “adaptive engagement model.”

“An adaptive engagement platform ultimately organizes what we do in an interdisciplinary fashion,” he explained.

The model integrates research, clinical capabilities, and benefits. Additionally, it involves partnerships with national and regional experts and community providers.

Once a qualifying family is identified, whether by reaching out to UnitedHealth Group or by going through the Family Engagement Center’s identification process, they are assigned a family advisor that is dedicated not only to the patient but also to the family’s wellbeing.

The family advisor and the patient’s family discuss the patient’s condition.

Thereafter, whenever the family contacts UnitedHealth Group, they are directed to their family advisor or that team, which is familiar with the family’s story.

“That set of capabilities—an adaptive engagement model, interdisciplinary teams that connect and partner with providers, and a long-term commitment to not just the individual member, but the family—we think is the distinctive approach,” Carlson shared.

Payers have used similar care coordination strategies to improve quality of care for other populations as well.

For example, Cigna assigns a care manager to members who have been diagnosed with serious conditions. The care manager serves the patient’s physical, mental, and behavioral healthcare needs through partnerships within Cigna and with external vendors.

Recruit committed team members

The third element that drove this strategy forward was the organic development of Carlson’s team.

The team did not immediately have a sense of the product that they would be constructing. Instead, they started with the population in need and the problems that this population faced. From there, the Family Engagement Center's operational functions, products, and strategies evolved naturally.

To some extent, the team itself also developed organically. As employees across UnitedHealth Group learned about the Family Engagement Center, some volunteered to be a part of the Family Engagement Center due to personal experience with rare and complex diseases.

As a result of their efforts, UnitedHealth Group reported that the average child in the Family Engagement Center saw healthcare savings between $2,000 and $5,000 per year. Overall, families saved more than $11 million in out-of-pocket healthcare spending.

Patient outcomes also improved. The hospital admission rate for children with rare diseases in the Family Engagement Center declined by eight percent. Additionally, the program has seen a 23 percent reduction in claims reworks and appeals.

Looking to the future, Carlson pointed to evolving cell gene therapies as another crucial element of support for this population in 2021.

“Right now a whole genome sequence next year will be 700 bucks,” said Carlson. “And the ability to create a drug or a therapy tailored to a unique individual is going to rapidly accelerate. Even in 2021, we'll see transformational changes. This population would be directly affected and payers are going to be in this interesting space.”