“HIE is the hottest ticket in town right now.” That was an opening statement at this week’s inaugural Data Exchange Framework Stakeholder Advisory Group, a new initiative by the California Health and Human Services Agency (CHHS) authorized under Assembly Bill 133. More than 10 years after the Health Information Technology for Clinical Health (HITECH) Act was passed and the federal government began pumping upwards of $100 million dollars into the state’s health IT infrastructure, we are still grappling with how to break down data silos and enable ubiquitous data exchange. This renewed interest from the top of our state policy-making pyramid is certainly welcome.
In an effort to advance health equity and respond to problems exacerbated by the COVID-19 pandemic, the Governor set a bold vision of building a state-led policy framework that enables widespread data exchange among health, behavioral health, and social service providers, payers, and public health to support person-centered care. The Data Exchange Framework consists of a single data sharing agreement and a common set of policies and procedures that will govern the exchange of health information beginning January 2024. But this is not our first rodeo – California has a long history of attempting, and ultimately failing, to implement a governance framework for widespread HIE in the state. While there is a sense of urgency coming from policymakers, those of us in the field can’t help but wonder what makes this different? And how can we build on all the tremendous work that came before us and finally move beyond talking about the value of data sharing to seeing real and coordinated progress?
We all know that California’s health care system – particularly the public health system – is fragmented and broken. California has long been seen as lagging behind other states when it comes to modernizing and improving care delivery. As noted in a 2018 blog post by Health Affairs editor in chief Alan Weil, “everyone at the top level talks about integration, but when you look at how the dollars flow, systems are not really integrated.”1
While parts of California’s health care system rely on coordinated, interoperable electronic systems, other parts rely on decentralized, manual, and siloed systems of clinical and administrative data exchange that is voluntary in many situations. This voluntary patchwork imposes burdens on providers and patients, limits the health care ecosystem from making material advances in equity and quality, and functionally inhibits patient access to personalized, longitudinal health records.
Unlike early efforts where the state lacked legislative direction and statutory authority, AB 133 provides CHHS with the authority to establish a framework that will “improve how health information is shared across the health and social services systems – protecting public health, improving care delivery, and guiding policies aimed at caring for the whole person, while maintaining patient privacy, data security, and promoting equity.”2 At Intrepid Ascent, we wholeheartedly support this vision and work with communities across the state toward these goals. However, it’s a pretty tall order particularly given the aggressive timeline CHHS must meet – the framework must be finalized by July 1, 2022, with the data sharing agreement executed by a large swath of stakeholders including hospitals, physician organizations and medical groups, skilled nursing facilities, health plans, and ancillary providers, just six months after that. For context, most of the existing regional health information organizations spent close to a year adopting and executing their participation agreements, which only focus on clinical exchange among health care providers and not the expansive cross-sector data sharing envisioned by the Data Exchange Framework. While these efforts can be built upon, likely enabling some shortcuts to “get to yes,” the Stakeholder Advisory Group will not want to get too far ahead of the federal Trusted Exchange Framework and Common Agreement (TEFCA), which is unfolding during this same time period. The Stakeholder Advisory Group’s goal is that by 2024 the initial group of “participating entities will exchange health information or provide access to health information to and from every other entity in real time for treatment, payment, or health care operations.”
That is the broad charge the Stakeholder Advisory Group is working towards, while addressing the extensive list of concerns raised by stakeholders, building public trust, and tackling challenges that have long plagued our health care delivery system. As noted in a previous blog post, “the factors driving shared interest…do not imply shared understanding of HIE today, or a common vision for the future.” This dynamic was on display during Tuesday’s meeting, in which stakeholders voiced concerns and raised good questions:
- The current vision and perspective is too health-centric and should be broadened to include more social and/or community-based services
- There is a lack of representation from key sectors such as EMS, corrections, behavioral health, as well as better representation of the LGBTQ community
- Leverage and build on all the work done to date, as well as adopting national standards and policies
- Support other services providers that have not benefited from health IT investments previously through funding and technical assistance
- Provide clear, concrete guidance on privacy laws to reduce tension that occurs with varying legal interpretations
- What will the governance and enforcement of the exchange mandate look like?
- It is not enough to just move data, it also has to be usable
As one Advisory Group Member stated, this is a critical and important opportunity, but with that comes a great deal of responsibility, not least of which will be the ability of the Stakeholder Advisory Group to tackle difficult conversations given the rocky history and setting aside organizational priorities to focus on building trust and creating a system that serves all Californians. Our Principal, Mark Elson, astutely stated in his recent post that while there will be competing interests and fierce debate, we trust that the professional community will operate in good faith, as we have seen over and over again during the long and winding HIE path.
They say the definition of insanity is doing the same thing over and over again expecting a different result. As the Advisory Group closed out their first meeting, there were indications that we are not just repeating past mistakes, with the healthy emphasis on defining priorities, setting guiding principles, focusing first on the what before the how, and being very explicit that we need to achieve these goals for all Californians. It remains to be seen whether this “big-tent approach” will work given the challenges, but we are encouraged and look forward to working with stakeholders and partners to achieve real and long-lasting success with electronic exchange of health and social data.
[1] https://www.chcf.org/blog/california-leading-way/#related-links-and-downloads
[2] https://www.chhs.ca.gov/blog/2021/08/20/data-exchange-framework/