Twenty percent of children have specialty health needs, but 39 million children in the U.S. live more than 80 miles from a pediatric subspecialist.
This gap in care can lead to delayed diagnosis of rare or complex conditions in children, sometimes taking up to five years to diagnose with an average of three misdiagnoses and eight different doctors, according to experts at Boston Children's Hospital.
The premier children’s hospital in the country teamed up with virtual specialist platform Summus Global earlier this year to expand virtual care for populations with complex healthcare needs.
The two organizations announced their partnership in May of this year to scale the hospital’s pediatric virtual care options. Since the announcement, Summus has leveraged its digital power to expand the hospital's second opinion program connecting specialists in Boston with patients around the globe, according to Jennifer Doorly Magaziner, vice president of digital health at Boston Children’s, and Mary Mulcare, M.D., chief medical officer at Summus.
Magaziner and Mulcare spoke at the annual AHIP Consumer Experience & Digital Health Forum this week about the future of digital health and emphasized the unique capabilities of virtual subspecialty care.
“People see a lot of physicians who may be trying their hardest but just haven't seen a diagnosis as often,” Mulcare said. “There’s a lot of time that's wasted, a lot of costs associated with that, a lot of worse clinical outcomes, if you will. But if we can get people the level of knowledge that physicians at a place like Boston Children's have early in the game, we can really make a lot of difference.”
Most virtual care models offer primary or urgent care with a recent expansion in behavioral health. Use of Summus’ specialist platform jumped during the pandemic with an increase of 3.1 times and membership growing 1,000% between January 2020 and January 2021.
“A lot of the really rare, complex diseases that we treat, that our specialists are really highly trained to treat, not many other specialists across the globe are trained or maybe have even seen a kid with the conditions we have,” Magaziner said. “So oftentimes when patients don't have access to us early on in their diagnostic odyssey, we have sad stories of patient families that show up after two and three surgeries. If we had met them earlier in their journey, it could have prevented unnecessary surgeries as we would give them different treatment plans.”
Other virtual specialty providers have seen growth such as Story Health, a virtual cardiology care startup, which received $22.4 million in series A funding in March.
The Biden administration has expressed an interest in expanding specialty care through the Center for Medicare and Medicaid Innovation, outlining savings and upfront investment for primary care physicians wanting to focus on specialty populations.
Community-based physicians are kept in the mix through Boston Children’s second opinion process so that treatment plans can actually become treatment if a patient cannot physically reach Boston Children’s. In many cases, a local medical professional interpreted a minor issue as a major one because it was being viewed through the lens of adult care. Part of personal care, Magaziner said, is not only having the right subspecialist but the right pediatric subspecialist.
“Virtual also allows for the entire family to be a part of it and both partners in the relationship to be involved, whereas sometimes, when it's in-person travel, required only one,” Mulcare said. “You know one parent gets to go. One individual gets to go, right, and then it's a lot of game of telephone and reporting back. 'And did you ask that question?' 'No, I didn't ask that much.' You know it saves a lot. It really improves the overall family communication when everybody can be on the same page the first time around; everybody can be involved in the conversation.”
At the beginning of the pandemic, Mulcare said, providers were forced to become comfortable with virtual platforms quickly. While hurdles like the need for at-home pulse oximeters had to been addressed, providers ultimately saw an advantage to virtual care. Being able to see a child in their home environment created a holistic view that enables Mulcare to look at the full humanity of a patient. “When I get doctors involved in Summus and doing these consults, I get texts from doctors the next day saying, ‘This is why I went to med school,’” Mulcare said.
Mulcare believes that allowing physicians to work to the top of their license will cut down on the substantial burnout throughout the industry. While legislation seems to match physicians' enthusiasm for telehealth with the 416-12 clearing of H.R. 4040, the Advancing Telehealth Beyond COVID-19 Act of 2022 bill in the house, Magaziner is keeping an eye on how payers will act in a post-COVID landscape, especially in regard to specialty pediatric care.
“Now is the time for providers and payers to partner and make sure that we reinforce telehealth as health and that this is a really important modality for equity, for inclusion to help extend our reach, and that now is not the time to roll back reimbursement or roll back some of the waivers that have been placed during COVID,” Magaziner said.
“We're at this really pivotal moment. We work very closely with our payer partners to make sure that we keep moving this transformation forward and that it doesn't roll back. The world will be hearing from children’s families if it does roll back," she said.