An excellent investigation by C-HIT published Tuesday found that the Connecticut Office of Health Strategy has squandered $20 million in federal funds and delayed for years a key health improvement system that could be protecting our health today. The C-HIT investigation took the better part of a year, encountered serious roadblocks from OHS, and only scratches the surface of the mess.
The system, a Health Information Exchange (HIE), allows healthcare providers caring for a patient to coordinate care, avoid delays, and prevent errors across our state’s broken healthcare maze. HIEs ensure that everyone caring for you knows your medical history, your allergies, what has and hasn’t worked for you in the past, and your preferences for care. An HIE eliminates the experience of getting to a medical visit and hearing that the provider can’t find your lab results, so they do it again “just to be safe.” HIEs reduce paperwork burdens and costs for patients, providers, and payers. HIEs are also a key tool for researchers and policymakers to identify population health trends such as obesity or overdoses and target scarce resources where they are needed. An HIE can find gaps in care, pinpoint areas of over and under capacity, spot best practices as well as low performers, to improve the quality of care, and control costs.
HIEs are a win-win. So why doesn’t Connecticut have one?
There are 89 functional HIEs in the US, protecting patients, improving health in their states, and saving money. Connecticut has been trying to implement an HIE for 16 years and it’s been painful to watch. The C-HIT investigation describes the latest spectacular failure to bring an HIE to Connecticut.
Starting in 2017, Connecticut spent $20 million and recruited a star team of developers to create an in-state HIE, drawing on talent that had created functioning systems in other states. Housed at the University of Connecticut, the system would’ve belonged to our state, rather than to high-priced, out-of-state consultants who we’d have to pay whatever they ask, each year, to keep it running.
I was lucky enough to see the UConn team’s impressive presentation* at a MAPOC meeting in December 2017. The UConn system was built not only to set up an HIE but also to answer real questions Connecticut policymakers are asking about the state’s health, not to spit out generic canned reports. It could identify which providers’ patients were getting better and which weren’t, so we could learn how to improve care for everyone. It could dive into the weeds to find specific answers to specific problems that we never get with OHS’s usual aggregated analyses. UConn’s system would’ve allowed us to differentiate between babies and bathwater, to fix what’s broken without disturbing what’s working.
But last year, for unknown reasons, OHS shut UConn’s project down and “threw away” everything the star team built, deciding to start over with an out-of-state system. It’s unclear if OHS’s new HIE, Connie, is functioning despite a state law requiring hospitals and practices to submit all medical records into the system.
Even more troubling, Connie intends to sell access to Connecticut residents’ confidential medical records to fund their operations. Currently, Connie has only discussed selling “subscriptions” to insurers and large healthcare organizations, but they have not ruled out other groups. Consumer advocates have raised serious concerns about this plan. Large companies have been called before Congress for selling our browsing and purchasing history, far less sensitive than medical records, without our consent or knowledge. Americans want their providers to have access to our medical records but are concerned about unauthorized people accessing their confidential medical information. Getting privacy wrong could result in discrimination, embarrassment, and people avoiding care for sensitive conditions. State government shouldn’t engage in any sales our medical data.
Under pressure from advocates, Connie did agree to allow people to opt-out of the HIE. But patients shouldn’t have to choose between coordinated, quality healthcare and risking their privacy. OHS has done nothing to alert people to this right and the risks of the system if they stay in.
Advocates are hopeful that investigative reports like C-HIT’s latest and new leadership at OHS, will cause a course change to fix Connie and other OHS programs to improve Connecticut healthcare.