How Sharing Health Data Helps Patients

Dr. Jan Lee currently serves as the CEO of the Delaware Health Information Network (DHIN), the nation’s first statewide clinical health information exchange. She works with key leaders in the statewide health care community to aggregate clinical data from hospitals, laboratories, radiology centers, ambulatory practices and health plans into a longitudinal health record. Additionally, Dr. Lee is a board certified Family Practice physician with a Master of Medical Management degree and a wealth of leadership experience.

CIO Insight: Describe the Delaware Health Information Network.

Jan Lee: The metaphors we use to describe our core services are “the post office” and “the public library.” We deliver clinical results and reports to providers on behalf of the hospitals, labs, and imaging centers who contract with us to provide that service (our “post office” function). In the process, we archive a copy of that data for future query and retrieval through our provider portal (our “public library” function) by other health care professionals with a need to know. Participation in these core services, either as a “data sender” or an end user or both is nearly universal across the health care community of Delaware.

CIO Insight: As the oldest and longest running statewide health information network, how have you fostered relationships among entities who might otherwise view themselves as competitors?

Lee: Visionary leaders of Delaware’s largest health systems agreed from the beginning that the welfare of patients is best served if all the relevant clinical data is available at every stage in the continuum of care. Time and experience revealed that they each continued to thrive in the environment of data sharing, and we have now reached the point where the few stragglers are coming to us saying they are losing business to competitors who HAVE chosen to share their data through DHIN.

CIO Insight: In 2005, the eHealth initiative developed a framework for assessing and tracking health information exchange development. Seven stages of development were defined. Could you describe those?

Lee: My abbreviated description of the seven stages is as follows:

Stage 1 – Starting (need recognition)

Stage 2 – Organizing (defining goals, funding sources, governance, policies)

Stage 3 – Planning (tactics, business plan, securing funding)

Stage 4 – Piloting

Stage 5 – Operating (fully operational, data actually being used by HIE participants)

Stage 6 – Sustaining (fully operational with a sustainable business model)

Stage 7 – Innovating (expansion of value-added services)

We are happy to report that we are solidly in stage 7.

CIO Insight: How do you impact patient outcomes?

Lee: We save the practices time (and time is money) in searching for missing information. They are less likely to give up the search if it is easy and quick to get all the information they need in one spot. We have seen a 21% reduction over four years in the rate of ordering a specific set of high cost imaging studies and a 64% reduction in the rate of ordering high cost lab studies. This means reduced radiation exposure and out-of-pocket costs for the patient. We have heard many stories of how DHIN has been important to the patient experience and patient outcomes. One is early detection of drug seeking behavior which enabled helpful clinical intervention. Another is an elderly patient who presented to her PCP after a hospitalization and expected to be asked many questions about the hospitalization she couldn’t answer. She was quite pleased to discover that the PCP already had all the relevant information at his fingertips.

CIO insight: Given the panoply of constituents who are involved in clinical records from doctors, nurses, hospitals, insurance companies and patients, how do you think developing an ecosystem that is efficient where the right information is accessible at the right time?

Lee: I’ve actually begun to stress that “HIE” should really stand for “Health Information Ecosystem.” An ecosystem is in balance when all participants both draw from and contribute to the whole. No health care entity has all the information about the patients under their care or for whom they are responsible at any given time. The HIE provides the opportunity to pool information and share it in ways that add increasing value to all participants.

CIO Insight: What innovations do you have planned for the year ahead?

Lee: We are currently working on a provider scorecard. The major payers in Delaware have agreed that some portion of their value-based contracts will be based on performance against a common set of clinical, financial and practice transformation metrics. DHIN is working on the technical tools to aggregate these data into a dashboard that can be accessed (with appropriate restrictions) by both the practices and the payers. We expect to have a v1.0 beta product ready by end of Q1, 2015.

We are on the threshold of a consumer engagement initiative focused on making all data held by DHIN for any given patient directly available to that patient. We expect to begin work on some fraud-detection initiatives in the very near future, and are exploring the potential for using the data held in stewardship by DHIN in support of clinical research. This will require new data use and reciprocal sharing agreements with our data senders.

CIO Insight: How has the Affordable Care Act impacted what your team does?

Lee: The ACA has created more demand for data sharing and advanced analytics capabilities. This has helped us to grow in some ways, and threatens us in others, as some organizations are pursuing some of these initiatives on their own instead of working with DHIN to develop a shared set of tools and capabilities. We have such a track record of success that we are already beginning to see trends of converging on DHIN to provide the needed technology tools to support ACA initiatives in our state.

CIO Insight: What trends particularly excite you?

Lee: I am very excited by the trend toward empowerment of consumers with the clinical and financial information they need in order to be wise and thoughtful partners in their own health and health care. We have a long way to go, but the winds of change are blowing.

Peter High is President of Metis Strategy, a business and IT advisory firm. His latest book, Implementing World Class IT Strategy, has just been released by Wiley Press/Jossey-Bass. He is also the author of World Class IT: Why Businesses Succeed When IT Triumphs. Peter moderates the Forum on World Class IT podcast series. Follow him on Twitter @WorldClassIT.

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