Our Letter to Secretary Ghaly: the DxF Stakeholder Advisory Group and Our Principles

January 18, 2022

Dr. Mark Ghaly, MD, MPH, Secretary
John Ohanian, Chief Data Officer and Director, Center for Data Insights and Innovation
California Health and Human Services Agency
1660 Ninth Street, Room 460
Sacramento, CA 95814

Dear Secretary Ghaly and Director Ohanian,

Over the last four months, the Data Exchange Framework (DxF) Stakeholder Advisory Group,
as well as the Data Sharing Subcommittee, have made significant strides towards statewide
health data exchange in California. We are heartened by the direction the discussion is headed
in, and very grateful for your leadership, and your insistent focus on improving the lives of every
Californian––the fundamental goal motivating the entire DxF process. As you rightly said to kick
off the second meeting of the group, “We continue to fail our communities and our populations
because of the lack of consolidated information around specific individuals, populations and
communities. We will continue to keep…the communities we serve front and center in these
conversations. We want to build something we can all be proud of.”

Throughout the process, as well as during the 2021 legislative session that paved the way for AB 133, our coalition supported the creation of a statewide health information exchange network, which we believe is the best way to achieve our coalition’s vision, purpose, and policy goals. They are as follows:

Vision: Connected health data is the standard across California: Every Californian and
their providers have the information and insights they need to make healthcare
seamless, high quality and affordable.

Purpose: This multi-stakeholder coalition aims to support policy that builds capacity to
support provider and health plan participation in statewide connected health data
infrastructure.

Principles:

  • Patient, Caregiver and Provider Stories Lead Our Work. We approach our work
    with patients, caregivers and providers at the center, and their diverse voices
    guide our work. We recognize that data collected by the health system should be
    used to improve patient and caregiver experience and outcomes and to the
    benefit of the doctors and nurses that care for them.
  • Health Equity and Care Transformation Are Our Ultimate Goals. We understand
    the role connected health data play in improving the value of care, lowering
    costs, reducing burdens on patients and identifying and eliminating health
    disparities that continue to impact too many Californians.
  • Linkages with Public Health Are Essential to our Success. We recognize that
    data collected by the health system strengthen our public health infrastructure
    and ability to prepare and respond to public health emergencies.
  • Data Privacy and Security Must Be Reinforced. We believe that connected health
    data can and must be developed and shared among systems in secure ways that
    uphold patient privacy.

Looking forward, we would encourage the group to continue to focus on the real and urgent
issues at hand, as they affect real people rather than the theoretical. With the emergence of the
omicron variant, public health data sharing–especially immunization data–among state and
other stakeholders is more pressing and urgent to solve than ever. We think this issue as well as
the state’s bold CalAIM initiative present key use cases that, if solved through this stakeholder
process, can collectively help us solve our wider data sharing needs. Connecting for Better
Health sent a letter to state officials in December emphasizing the connection between the
COVID-19 vaccine rollout and the importance of data sharing, and also put together a fact sheet
on the same topic.

We also hope that state leaders work together in the crucial next five months to solidify funding
for the work to be outlined in the DxF. If the first four meetings are any indication, the
Stakeholder Advisory Group is on track to submit a comprehensive vision for health data to
lawmakers and other leaders. We believe it will be critical to develop a funding plan that
leverages both public and private dollars to finance our state’s health data infrastructure.

As our coalition has learned from conversations with officials in other states, this process––of
creating a statewide data exchange system that advances better health outcomes for every
community––does not have to take years. It can be set up in a matter of months, even in a state
like ours, by devoting the right resources and creating the right incentives to get every
necessary player to participate. The DxF being assembled has the potential to set California on
the right track to creating a better future for statewide data exchange sooner rather than later.

Our coalition is grateful to you and your team for the dedication you have shown to this process,
and remain open and eager to engage with you on the contents of this letter, the DxF process,
or to discuss our coalition’s fundamental goals for statewide health data exchange in California.

Sincerely,
Timi Leslie
Connecting for Better Health
President, BluePath Health

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