In a 2018 piece on why American medicine still runs on fax machines, Vox explained why the last decade of US government efforts to automate health data exchange had shown limited results. Earlier this month, new rules from ONC and CMS went into effect focused on making it easier for patients to access their health information and to exchange data across electronic health record systems and payers. Here, we explain why the fax machine continues to be such a formidable opponent.
Getting access to your health information isn’t easy
To understand the great staying power of the fax machine, consider the experience of a patient Jane Doe, who decides that she would like to access her health data. Like most of us, Jane changes jobs every few years, and as a result she’s been on a number of different health plans, each of which stores her records in their own systems independently. She has also moved around a few times for school, then work, and then to be closer to family. In each of those locations, she had a primary care provider, but also had a couple hospital visits and had to see a number of different specialists, from her gynecologist to her ENT.
Jane’s first option is to pull the records herself. To the best of her recollection, she compiles a list of all the encounters she has had with the healthcare system over the years. She then decides to see what’s available online and is pleased to find that her current primary care provider is affiliated with a health system that offers an online patient portal. However, several of the specialists she is seeing aren’t in the same portal, and she can’t find a way to log in to similar portals for providers she’s seen in the past. She knows that she’s on a Blue Shield plan now and used to be on United, but she can’t remember before that.
Jane decides to start working the phones. She calls her gynecologist’s office, who tells her that they can export a PDF and send it over to her in a few days. She has a few similar calls, with some people offering to send her PDF exports, others offering to scan in documents, and others asking her for a fax number. Others are non-responsive or have a formal request process, which might require Jane to send a written request letter or, in extreme cases, to go to the provider site to make the request. Months later, what Jane is left with is not a unified set of her medical records, but an incomplete mix of login credentials for different portals and PDFs in her email that she will have to organize and categorize herself.
And of course, every individual interaction with the healthcare system touches lots of different data repositories, few of which are integrated:
And making information requests easier is a big operation
In practice, this process is laborious enough that patients and their representatives (lawyers, insurers, etc.) work with specialized companies to go pull medical records, and providers work with other companies to ensure they are fulfilling the requests promptly and in a compliant way. A number of companies exist to solve for different parts of the process:
Who is trying to fix the problem
There are four major classes of companies working to solve the problem of pulling patient medical information in a timely and compliant way:
Why the fax machine will outlive the new interoperability rules
There are a number of new interoperability rules currently being proposed and implemented, but the rules that went into effect on April 5th have two specific requirements:
The new rules will make retrieval of some patient data more automated, and will make it much easier to develop new patient-facing applications that require access to patient’s data. However, the data that must be made available under the standards (the United States Core Data for Interoperability standards, or USCDI) is limited. The standards include structured data points like patient vitals, prescriptions, tests performed and lab results, but don’t include other valuable information, including much of the unstructured data that exists in a patient record.
Many valuable uses of patient data require access to the full record. Below is a brief summary of how many necessary elements the data standards cover for different use cases:
To take one example, risk adjustment (the process of determining what payment should be made to a Medicare Advantage plan for taking care of high-risk or high-cost patients) requires access to scans and test results, which won’t be available through an API.
The new interoperability rules will undoubtedly have positive impacts across the industry, and it is a good start. The change will improve patient access to health information, and allow patients to play a more direct role in their care. But because so much critical health information exists outside the data standard, we will continue to use scanners, call centers, and – in extreme cases – have people knocking on the door of a provider in order to obtain their records. And we will continue to fax.
What the future looks like
Today, the fragmentation of health data is the single biggest bottleneck to realizing the power of health data and technology to improve patient outcomes. Ten years from now, each of the following things should be easy and fast to do:
The new rules are helping to point the way and resolve some coordination problems across entities, but it is up to the broader healthcare community to relentlessly pull this future forward.
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Many thanks to Niall Brennan and Quinn Johns for their thoughts & feedback on this write-up.
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Both payers and providers are increasingly utilizing SDOH data to enhance care delivery and improve health equity. By incorporating SDOH data into their strategies, both groups aim to deliver more personalized care, address disparities, and better understand the social factors affecting patient outcomes.
Payers increasingly leverage SDOH data to meet health equity requirements and enhance care delivery:
Payers’ consideration of SDOH underscores their commitment to improving health equity, delivering targeted care, and addressing disparities for vulnerable populations.
Capital District Physicians’ Health Plan (CDPHP) incorporated SDOH, partnering with Papa, to combat loneliness and isolation in older adults, families, and other vulnerable populations. CDPHP aimed to address:
By integrating SDOH data, CDPHP enhanced their services to deliver comprehensive care for its Medicare Advantage members.
Value-based care organizations face challenges in fully understanding their patient panels. SDOH data significantly assists providers to address these challenges and improve patient care. Here are some examples of how:
By leveraging SDOH data, providers gain a more comprehensive understanding of their patient population, leading to more targeted and personalized care interventions.
While accessing SDOH data offers significant advantages, challenges can arise from:
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Explore how Datavant can be your health data logistics partner.
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