The pandemic has turned the spotlight on inaccessible, unusable, patient data. It's time to accept the reality that this is a comorbidity.
Editor's Note: Paul Markovich is president and CEO of Blue Shield of California.
Nearly three years into the pandemic, the Centers for Disease Control and Prevention (CDC) reports more than 1 million lives lost due to COVID-19 in the United States, with the World Health Organization reporting more than 6.6 million deaths globally. Many analysts put the actual number of deaths caused by COVID significantly higher than these numbers and neither estimate captures the potential long-term health effects of COVID.
One of the biggest challenges to preventing and managing illness, including COVID-19 infections, hospitalizations, and deaths, is inaccessible, unusable patient data. Despite Californians reporting increases in care quality this year compared to last, the United States’ lack of comprehensive, timely, usable, and secure digital information is perhaps the greatest barrier to improving health and improving our ability to address a pandemic at the local, state, and national level.
It’s time to accept the reality that a lack of readily available and usable patient data is a comorbidity – and it’s beyond time to fix it.
Poor information sharing as a US comorbidity
Clearly, our country was not ready for a pandemic, and many experts have correctly pointed out how broken our data exchange system was at the outset. One study found that the most common barrier to effective surveillance was the inability of public health agencies to receive electronic data from providers.
More than 40% of hospitals reported being unable to share patient data with public health agencies, which impacted how COVID-19 was tracked, reported, and treated, with patients paying the ultimate price. This shouldn’t be a shocking discovery to anyone. Name another major industry in the 2022 version of the United States that relies substantially on CD-ROM discs and fax machines to capture and share information.
After leading California’s COVID-19 Testing Task Force and serving as the third-party administrator for the state’s vaccine operations, Blue Shield of California saw first-hand the challenges created by a lack of timely access to actionable data. The inability to easily exchange, integrate, store, and use patient electronic health records surely heightened the impact of the pandemic.
These essential records are often maintained in many different proprietary databases designed to support private companies’ business models (that of physicians, hospitals, electronic medical record vendors, health plans, and others) rather than public health interests.
While legislation is underway that aims to improve data sharing at the national level (i.e., implementation of the Office of the National Coordinator for Health IT’s final rule on information blocking), it will not ultimately fix this problem.
Addressing this issue won’t just help us respond far more effectively and quickly to a pandemic but will also help us diagnose, treat, and support those with other illnesses, particularly those with chronic conditions. An estimated 7 million people in California have multiple chronic conditions, and taking care of them accounts for nearly 60% of the state’s healthcare spend, but the state of California, like most of the rest of the country, lacks the digital infrastructure to address it.
The health information exchange must go national to be effective
This issue can be solved if the health care system aligns interests and takes proper action. Specifically, we will need to do two things across all industry stakeholders to produce these records and thereby bring health care fully into the digital world:
- Formally establish required standards for creating, maintaining, and sharing these records.
- Create the infrastructure and capabilities needed to gather, integrate, store, and use the records.
California has taken a big step on the first of these issues by mandating digital information sharing among industry players. As part of this effort, the state convened an advisory group that included stakeholders across the industry – from health systems and health plans to academic leaders and public health agencies – to design and implement an information exchange framework, which the California Health and Human Services published in July 2022.
This is a good start, but the mandate to share data needs to be expanded beyond California, and even in California we must do more to make this data timely, usable, and secure – not just shared. A physician cannot improve their treatment of a patient and the state cannot improve its COVID response by getting a patient data dump in the form of a 70-page PDF file of an electronic medical record – a common occurrence in today’s world.
Making data timely, usable, and secure: We need to want it
Opponents to data sharing routinely cite the millions of data exchanges made daily, which belies their lack of utility and integration with patients’ medical histories. Often this information ‘sharing’ will come in the form of PDFs or reams of faxed admission and discharge records. This is exactly what I experienced recently with my weekend warrior sports injury where I was given a CD-ROM and paper records from my providers.
While digital records may be plentiful, there is a deep lack of usability and integration that makes that data useful to improve the entire health care system and make it more effective.
Technology must be deployed and funded to make data sharing and usability possible for the entire health care delivery system. To do this, we must be able to create a unique patient profile; process and share clinical information in real time; and make available to each patient their own complete health information regardless of where they received care.
Technology is available. What’s required is the will to align on a common vision of our data ecosystem. Together, with collaboration among all participants of the healthcare system – including the public and private sectors – we need to create a patient-centered system that benefits everyone for the care we all need and be better prepared for the next public health crisis.
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