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May 21, 2020 05:17 PM

Pandemic highlights urgent need for data-sharing

Claudia Williams
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    Claudia Williams is CEO of Manifest MedEx, California’s not-for-profit health data network, and a former senior adviser for health innovation and technology at the White House, where she helped launch President Barack Obama’s Precision Medicine Initiative.

    Imagine trying to piece together a complicated puzzle—one of those with 5,000 dime-sized pieces—and as you're putting it together, you start to realize that dozens of pieces are missing. You don't know which piece fits where and you're certainly not going to be able to finish this puzzle in any timely or cohesive fashion.

    This is the challenge so many providers face when patients land in the emergency department. So many questions need to be answered: Why is this patient here? (In some cases, for the second or third time that week.) What's happening at home? What's the bigger picture? Did they already get tested for coronavirus? What was the result? What do we need to know about this patient to see the bigger picture? Despite providers' best efforts, it's incredibly challenging to help patients when you don't know their health history. And often the patient populations frequenting the ED are both the ones most in need of consistent care and at highest risk for poor outcomes during COVID-19.

    In 2018, Charter Healthcare in Southern California was staring at the giant puzzle with so many of the pieces missing and they were trying to put it together anyway. The home care agency—providing hospice, palliative, and transitional care—told us that in their early years they were consistently challenged by not knowing a patient's whole health history or the latest information on their care. It made their jobs difficult and the goals of reducing hospital readmissions and delivering meaningful palliative care very challenging.

    They struggled to get accurate and timely information. Relying on manual processes like faxing and placing phone calls to busy clinical staff they said was "bluntly, a nightmare," we were told. These requests were created manually and faxed to providers, followed by multiple rounds of follow-up calls. Health plans could help somewhat but did not have access to detailed patient notes, especially for patients in the ED. Relying on patients to recount their healthcare history was challenging and Charter was rarely able to piece together the whole picture of a patient's health. The bottom line: The Charter team was spending time faxing and phoning for basic information, instead of providing care and comfort to patients in their homes. A better way was needed.

    Charter joined our not-for-profit health data network, Manifest MedEx (MX) in 2019. MX was created to safely deliver clinical and claims data across California and currently covers 21 million residents. After joining MX, they were able to access real-time clinical information on 95% of their patients and are already seeing gains in efficiency. They now know immediately when one of their patients is admitted to the hospital and can arrange for the help they'll need at home before they're discharged. They'll also know right away when a patient tests positive for COVID-19.

    With this information Charter has been able to help patients avoid unneeded hospitalizations and get better quicker. Their health plan clients report that that Charter helped them save millions of dollars and reduced hospitalizations by 50%. Charter has also been able to improve outcomes for patients with congestive heart failure and chronic obstructive pulmonary disease by being able to more accurately track medication adherence, coordinate treatment with primary care providers, and spot care issues early. With a single, reliable source of data for the dozens of hospitals, health plans, and ambulatory practices in their community, Charter no longer has to hunt down relevant bits of information or bug busy clinical staff.

    We hoped that our friends at Charter could write this article themselves and share their own success stories with our healthcare colleagues. When COVID-19 appeared their team had to drop everything to focus on keeping patients and staff safe.

    As our country prepares for the next phase of care delivery during coronavirus, we hope partnerships like this will be seen as the model for proactive, coordinated care for vulnerable patients. When health data is shared through collaborative nonprofit networks, front-line providers are kept in the loop in real time on patient movement, health changes and diagnoses, and they can respond smartly. Having information that helps you stay ahead of what vulnerable patients need, not waiting and reacting, is a major part of what will save lives during this pandemic today and will set up healthcare organizations for success on quality outcomes and value in the future.

    In this pandemic, data is more urgently needed now than ever. And it needs to happen everywhere. This is the moment when it really matters to get all our labs connected, to equip contact tracers with the latest phone and email address for patients, to be able to track hospital admissions with flu-like illness. The time for data blocking is done.

    The recent decision from CMS to push back the deadline on interoperability rules is a delay in the wrong direction during a pandemic. We need to get data in the hands of the people who are helping patients stay at home and avoid dangerous hospitalizations. We need all the pieces in order to help solve the puzzle of proactive and personalized patient care. This pandemic is the perfect time to make it happen.

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