When we talk about patient care, especially care for patients who are older, more medically complex, or less health literate, a unifying necessity is care coordination.
In an ideal scenario, care coordination could include such diverse tasks as making appointments with all the patient’s doctors, ensuring all the doctors have access to the patient’s records (and each other’s care plans); keeping the patient’s insurer on the same page; sharing back any acute events, like an unexpected trip to the emergency room (information that is often siloed unless the patient verbally shares it at their next appointment); organizing any home health visits and/or delivery of durable medical equipment; and coordinating with a pharmacist to make sure all prescriptions can be taken in tandem.
(I’m leaving out all of the additional parts that are just as high-touch but aren’t as straightforwardly “coordination,” including getting the patient to appointments, organizing prescriptions and finding a way to remind the patient to keep taking the medications, encouraging diet/exercise/therapy as appropriate, and more.)
In the real world, though, patient care coordination isn’t nearly as straightforward and personalized. Part of the problem is that, except in certain closed systems, there is often no one person or entity that has been deemed responsible for coordinating.
Closed systems
There might be a better phrase out there than “closed” vs. “open,” but this is what I’m trying to get at: Modern health systems are built to be self-contained healthcare entities. They include the emergency room for acute care, onsite specialists for outpatient chronic care, and suites for both inpatient and outpatient procedures. Health systems often also have onsite lab services, imaging services, infusion services—in other words, all of the pieces brought together as one.
Taking it a step further, health systems like UPMC have their own health insurance offering. While there are notable downsides to this highly concentrated, vertically integrated model (not least higher prices), the idea is that patients never have to leave the system, all the records are in one place, and the care can be more easily coordinated.
Again, reality is more complicated, and while concentrated health systems tout their efficiencies, research evidence suggests that said efficiencies haven’t really materialized, at least not yet. And, in lieu of said efficiencies, health systems often don’t do care coordination well. Part of the reason is that there’s limited incentive (except with health system-wide value-based reimbursement models) to invest in coordination, part of the reason is that closed systems aren’t entirely closed (and even in the case of a large health system, multiple entities in the network might be using different EHRs and workflows), and part of the reason is that systems often rely on PCPs to do much of the coordinating ad hoc, trusting these overworked staff members to manage the pieces.
The pandemic also made coordination more challenging: Healthcare workers, spending time together at the hospital, used to have more opportunities to informally coordinate care across patients.
All of this being said, in a perfect closed system, care coordination seems to be about processes more than partnerships. In other words: Has the system invested in the manpower and/or technology needed to accomplish coordination?
Open systems
Given the health system example, what I’m thinking of as open systems is obvious—it’s everything else. Outside of a unified, vertically integrated health system, care coordination is far more complicated. Individual providers, LabCorp/Quest, infusion centers, and smaller hospitals might all have different electronic health record providers, different communications systems, and different interpretations of HIPAA.
(The last point isn’t a joke. In case you’re unfamiliar, HIPAA is complicated, and many providers err on the side of way-too-conservative. One time I needed my vaccine record from my old pediatrician, who refused to give it to me unless I picked it up in person. Which was a problem, considering I no longer lived in the same state.)
To share patient information and even begin to coordinate care, all of these entities have to be on the same page, which they’re not. For open systems, care coordination depends far more on partnerships up front, before healthcare leaders can even begin to start working on processes.
A relatively new entrant to the space is making things even more complicated: Digital health companies, particularly those that provide direct patient care. These entities also have their own providers, methods, and, sometimes, their own EHRs.
(So what will happen when people using point solutions for one condition need more coordinated care as they age and develop comorbidities? I suspect companies will have to grow alongside them. More mature digital health companies like Omada and Livongo have developed models that coordinate around often-comorbid conditions like diabetes and heart disease, which suggests to me that newer companies may follow the same route as they mature and increasingly partner with employers and insurers. Without dedication to care coordination, though, digital health runs the risk of fragmenting everything further.)
Conclusion
The most striking part of care coordination is that no one is in charge. Moreover, there’s no clear responsibility for any one entity to take charge of coordination.
As risk-based reimbursement models become more common, more people are working on the problem of care coordination, so this is changing. In addition, there are several companies taking on these questions, including PatientPing (now Bamboo Health), Upfront Healthcare, and Pager.
To really see change in fragmentation, though, either value-based care will have to become a lot more widespread, and/or interoperability will have to become an actual thing, and/or we’ll have to come up with a better way to support PCPs (or another dedicated group of individuals) as care coordinators.
Finally, I’m not an expert on care coordination, and there aren’t many great resources out there, so I could very well be missing something. If you think so, comment below or reply to this email and let me know what I missed; I’ll share it in a future post.
This information shouldn’t be taken as investment advice (obviously), and the opinions expressed are entirely my own, not representative of my employer or anyone else.
The family is in charge of care coordination. Before starting Primary Record, I tried to start a nurse-led care coordination company to define a community-based role in healthcare. The purpose I served was mere aggregation and interpretation of the health records of 80+ year olds to families. Families are the most incentivized to coordinate better care for aging adults, and their role is completely downplayed in "patient-centered" care. Family caregivers were inspiring to work alongside. By helping share a more complete record in meaningful ways to community organizations and various points in healthcare, I found a value families were paying $85-$125/hour. Now, I am building tech to scale for more families to coordinate their families care because they will always be the ones most invested in the health and outcomes that matter to them.
Hospitalists speak to elderly people, but not their caregivers. The patient forgets what she was told, and the caregiver never finds out.
Then there are the medically complex patients who receive zero care coordination and whose families have vast paperwork burdens. Medicaid spenddown, I'm looking at you.