At a healthcare panel last week in Austin, TX, attendees heard from the former E-MDs CEO, an ACO CEO and a legislative HIT coordinator here in Texas. While the 110M medicaid fraud FBI investigation has stolen the spotlight in town, most of the dialogue circled around data sharing, privacy and patient engagement.
All of the panelists held, to some degree, two core opinions: 1) Patients don’t own the data in our current healthcare model and 2) Organizations continue to lack incentives to drive data sharing.
Let’s examine the first – for many of you who have tried to collect your medical history, there is no ‘download’ button as we have with our financial history. We’ve got to make phone calls, sometimes faxes, and often multiple requests to the same organization but to different departments. We’ve no idea how the material will return to us – sometimes by CD, paper copies, or if lucky, an emailed PDF. Don’t forget, there is usually a charge associated with the data collection and disbursement, in addition to signed waivers or paperwork.
But isn’t this the patient’s information? Do we own it? Should we have exclusive access and a right to determine to whom and where it is shared? This debate is far from mature. We can take a lesson from social media – our ‘likes’, personal profiles, behavior, purchasing decisions and much more are all on the open market – for a nice price. We sign those permissions away in crafted fine print for fun tools of daily life.
The stakes may be higher with health data interoperability. Lives can be saved if a medication history is readily available thousands of miles away from a patient’s home in a medical emergency. The pharma and insurance industries also have much to gain – by learning your outcomes, behavior and medical history, their business model will evolve, too (pharmacogenetics and personalized insurance plans…) – to become more efficient, though also more profitable.
This leads us to the second – if data sharing is ultimately good for the patient and industry, why are we still waiting for a responsible, comprehensive solution? The panelists called out several rationales:
- Open data means stiffer competition. If the neighbor can analyze our weaknesses, we could be incentivized to improve, but we can also fail. CMS demonstrations are forcing transparency, though not without exemptions.
- Information exchange requires billions of ‘information transactions’ – this is costly. Should providers be paying? Organizations? The patient? Everyone could benefit, including the payers – but no single entity wants to bare the cost today. We’re seeing more Care Collaboration organizations being created to pool resources.
- Vendors want to help their own, first. Some vendors have aligned to create a corporate entity to pay for sharing, while other Vendors are large enough to build a network among their own.
Carl Dvorak (President of Epic), in 2014 government testimony shared the following impediments to faster adoption of interoperability:
- point of care authorizations
- Phone book containing all exchange ready participants
- Single trust authority
- Governance where patient data is ONLY used for treatment
- Stronger ONC support for eHealth Exchange which supports unplanned transitions of care
CMS required a 10% transition of care exchange rate to comply with MU Stage 2. This may become 50% for care transitions to include a summary or care record with 10% electronically in Stage 3. Even the ONC has a 10 year plan, with the patient at the center – able to orchestrate where and when personal information is shared.
The panelists agreed, it is unlikely to see significant legislation driving any renewed independent HIE effort. Instead, the interim may find continued pressure on organizations to adopt more forms of sharing at their own expense – too great a risk not to keep the reimbursement coming in.
Interoperable health information is on the way, though we’ll need to find more competent data experts, a louder community voice and market incentives that share the benefits and costs across all.