So, why aren’t we sharing more?
There are lots of good reasons that data sharing that would benefit the patient/client/payer/provider isn’t being shared effectively across a range of providers.
Early research on this topic in 2012 suggested that even when the data are available for sharing, there are confounding factors such as lack of ownership of the shared care plan, lack of consistent communications between providers, and lack of clarity in workforce roles and responsibilities. A few years later, the situation had not improved much — workforce roles and responsibilities were still a sticking point, and differences in nomenclature and formats of care plans formed a substantial barrier to progress.
But the health systems have made much progress since those early days. Payers have realized that coordinated care translates into cheaper costs of care and better outcomes for patients/clients. The benefits of sharing data across health-care providers are now so obvious that Health Information Exchanges (HIEs) have transcended the “Trough of Disillusionment” on the Gartner Group Hype Cycle, and are now onto the “Slope of Enlightenment,” chugging along toward the “Plateau of Productivity.”
Some states and larger counties have had varying degrees of success with sharing data for more efficient and effective case management. Reports of those similar to the early research on sharing data in the health sector are common — workforce roles and responsibilities are not well defined, and in spite of all the work that has been done to demystify the privacy and confidentiality rules for sharing data, there are still pockets of “we can’t share that.”
HIES and a maturing menu
HIE trust policies are sufficient to exchange data, and they're mature and widely adopted. The trust policies increase confidence in exchange when partners are recognized as part of a trusted community. And then there is the data. Members can share other members’ data subject to statutory limitations, and the HIE acts as the broker. This model is functional and scalable, cost effective and efficient.
A range of services are offered to HIE members. Within the guidelines that members agree to, data can be exchanged with other members in different ways:
— Directed Exchange: Sending and receiving protected information between different health-care providers for patient support
— Query-based Exchange: The ability to allow health-care providers to search and request information regarding a patient from different health-care providers.
— Consumer Mediated Exchange: Allowing patients to collect and maintain control of their personal health information under policies that all members must agree to — for example, data cannot be used for health plan contracting.
Over the last 15 or so years, HIEs have built up the infrastructure to ensure members’ data is safe and secure and have codified the rules under which the data can be used. A package of services is available to members that include:
• Data security — encrypted in transit and at rest
• Identification and authentication services of users
• Consent management and patient opt-out tools
• Roles and limits of use enforcement — for example, health plans can only access data for their members.
These features contribute to important benefits that the HIE members receive. Because these services are already built, packaged and managed by the HIE, individual members no longer need to maintain expensive point-to-point agreements among trading partners and the contractual operations requirements of these agreements. Member also don’t have the “one-off” testing costs that comes with managing point-to-point interfaces. These costs alone should be lucrative to prospective members.
Trusted sharing of data helps everyone. Being able to share data between programs helps everyone see the bigger picture that moves us away from treating symptoms of problems our clients encounter and moves us toward solving those problems. Understanding how HIEs operate can help Human Services programs make use of this technology faster. There are still some issues that HIEs are working through, but the progress is undeniable. HIEs have done the hard work, and are now poised to invite Human Services organizations to come in.
As the largest payer for health-care services in the country, the Centers for Medicare and Medicaid Services (CMS) has doubled down on data sharing. Waivers for counties to build “community health information exchanges” are aimed at demonstrating effective use of data from human services organizations to better coordinate care; community service organizations are invited to share data on their clients (at a “food closet,” for example) in exchange for receiving data on the client (a discharge date, perhaps). Of course, a lot depends on the client’s consent to share those data, but the consent service is part of the HIE package of services and is actually fairly automated.
Having these data available for case management in human services can be a game changer for clients. Automated alerts (directed exchange) of encounters can help case managers understand the ebb and flow of touch points and how the picture may be dynamically changing for the client. The ability to consult with providers of services (query-based exchange) can provide a sharper focus of these touch points and do it faster, before a client falls through a crack in the system.
The fine print
It is important to note that HIEs are generally nonprofit organizations. The cost of setting up and operating the services that members are afforded is spread among all the members, on a cost-allocated basis. Members pay for their share of the infrastructure services based on their size and the number of individuals covered by their organizations, and the cost to exchange data is more or less pay-as-you-go. This model makes it possible to start small and then scale up.
Working with shared data is new to most health and human services organizations. We know from history that the workforce roles and responsibilities will need some concerted attention, and the health sector appears intent on getting there. But human services organizations don’t have to wait to start thinking about how effective collaboration will be achieved within their workforce. Many states are looking at how their human services business practices and relationships need to change to make better use of technology and shared data. Coordinated-care teams may need to sharpen their collaboration and coaching skills. New definitions of governance between coordinated care team members may be needed to get them out of their silos of operation.
Sharing whole data sets isn’t necessary for coordinated care. A few key data points can, in many cases, provide the critical information needed to effectively coordinate care for a specific population. Your local HIE is the hub where this can happen. Thinking about those data points that would be the most useful to your organization can be a good start. If those data points are “owned” by another Human Services organization, you can exchange them via the HIE hub if both organizations are members. A financial mapping of funding sources to get you there could get you started sooner and also help clarify the financial impacts to the organization of scaling up later.
Sounds like a great way to test-drive the concept and begin to understand in greater detail what it means for your human services organization without a capital expense.
