SUBSCRIBE TO OUR BLOG
Stay up to date with the latest from Datavant.
By Shannon Sartin West & Bob Borek
At Datavant we are on a mission to connect the world’s health data. We connect this data on behalf of patients, providers, researchers, life sciences organizations, health insurers, government agencies, and hundreds of health data and technology companies.
Today, we power the nation’s largest real-world data ecosystem, enabling our customers and partners to bring together disparate patient-level datasets while preserving patient privacy. We are privileged to be the trusted partner for 40% of US hospitals and clinics who must offer patients, other providers, government agencies, and insurers compliant access to medical records.
In 2022 we announced the Datavant Switchboard, our core connectivity platform. Today, we are excited to announce that the Datavant Switchboard includes the ability to support patient-mediated record retrieval to power clinical research.
Leveraging our network of more than 2,200 hospitals, 19,000 clinics, and hundreds of digital connections to electronic health record systems, health information exchanges, national health information networks and the nation’s largest health systems, customers and partners can improve research and streamline their medical record operations by securely and compliantly accessing richer, more meaningful clinical data.
Many factors are driving the demand for patient data in clinical research, from an increase in patient desire to participate in research driven by the global COVID-19 pandemic to the life science industry’s push for more data to inform drug development and delivery. Moreover, there is an interest in partners who want to access patient records to proactively address health equity and diversity in research. Collecting patient data from diverse populations requires the ability to retrieve clinical data no matter where patients receive care, from a large academic medical center to the smallest rural health clinic.
The need and opportunity is clear, but the challenge of quickly and compliantly locating and accessing a patient’s medical record is preventing more rapid innovation, discovery, and high-quality care across the U.S. healthcare system.
Whether you are a medical society building a patient disease registry; a study sponsor seeking to confirm trial eligibility; or a public health entity looking to inform policy, the burden of retrieving relevant portions of the patient’s record can delay these noble pursuits or block them before they even get started.
Recent regulations have prohibited information blocking, incentivized interoperability, and mandated patient data access, but the process remains cumbersome and confusing. It is not uncommon for health systems to require their specific medical record release forms be filled out before they release patient information. Some may even require requests to be submitted via snail mail. Demand for access to patient data and the desire from patients to share their data increases exponentially year over year, but the industry is not moving quickly enough to meet that demand.
Through Ciox, Datavant has been at the center of the movement of medical records for decades. In 2022, we retrieved more than 60 million charts for health systems and insurers across the country. We support continuity of care, quality reporting, risk adjustment, and dozens of other use cases. In the process, we have built direct APIs to more than 120 health systems across the country as well as connections to electronic health record systems and health information exchanges.
The result of this foundational work is reducing the turnaround time and friction associated with traditional requests for patient information through calls (and faxes and walk-ins!) to health information management departments across the country.
Our vision is for the Datavant Switchboard to enable secure and compliant access to complete patient records using the best available technology and connections.
To put that vision in context, below we walk through a specific example: accessing medical records to build a registry of cancer patients, without – then with – the Datavant Switchboard.
Accessing medical records for an oncology registry using traditional approaches
If you are building a registry of cancer patients to understand the natural history of the disease, you need access to data on cancer patients. There are many different ways to get it:
- use de-identified data gathered in the ordinary course of care
- access a limited data set through a research partnership
- gather patient-reported data
- obtain patient-consent to access identified medical records.
To achieve the right level of clinical depth and fidelity, most registries seek access to identified medical records.
Today, if you want to retrieve portions of a patient’s medical record to build a registry, there are at least four approaches, each with its own challenges.
1. Ask the patient
One way to get clinical information is to ask the patient to request their medical records and upload those documents to a registry platform. The burden is on the patient, and participation rates may suffer.
To mitigate this, some registries will hire staff to join Zoom calls with registry participants to show them how to log into their patient portals to download parts of their medical records. Patient burden aside, this approach often results in incomplete data given the limitations of what can be accessed through a patient portal.
2. Set up FHIR API connections to a health system’s electronic health record (EHR) vendor
Fast Healthcare Interoperability Resources (FHIR) is the current standard that aims to improve access to patient data. The movement to standardize connectivity to EMRs through FHIR APIs has created huge progress for data access across healthcare.
Alongside this progress has come new challenges. Data inside a health system is more fragmented than it may seem. A single API connection into an EMR will not provide access to all available clinical data. Furthermore, integrations are difficult and bespoke, each requiring its own implementation–a significant cost in staffing and fees. For anyone looking to do record retrieval at scale, this means thousands of time-consuming integrations.
For an oncology registry, the time and technical investment will far surpass what is feasible for a single project.
3. Reach out to every health system one by one
Patients participating in disease registries often have complex conditions, and the patients have received care at many different institutions. For each patient, there are on average 3 different health systems that have relevant information. Hiring full-time staff to retrieve records is a large administrative undertaking, which can take months or years. We highlight a few of the necessary steps here:
- Obtain written authorization from each patient in a format that will be accepted by each of the health systems
- Determine which healthcare institutions contain the medical record–typically by asking the patient to list out their physicians
- Find the right department and contact information for each health system
- Submit (often by fax) the medical record request
- Submit the correct authorization form because the wrong one was probably used the first time (and it is only flagged after someone responds to the first request)
- Provide payment for the record (not uncommon!), which means navigating Health Information Management department’s methods for accepting payment
- Track which institutions have provided records back and follow-up with those that haven’t yet been supplied – multiple follow-ups are often required
- Receive faxed records that can be hard to parse
- When follow-ups are required, re-submit requests manually and start again
4. Get the data from an HIE/HIN
Health Information Exchanges (HIE) and Health Information Networks (HIN) collect and coordinate the sharing of patient health information. These networks were created to facilitate the transmission of patient health data at the point of care for care decisions. However, they are often off-limits for the purpose of accessing patient information necessary for projects such as building an oncology registry, general clinical research, and even clinical trials. Despite national connectivity, data availability in the health information networks is limited and inconsistent.
For example, to build an oncology registry, you need to understand cancer staging through pathology reports with specific tumor histology and treatment decisions made via detailed clinician notes. That information is not commonly found in the data transmitted via an HIN or HIE.
Datavant Switchboard: One seamless solution for medical record retrieval for clinical research
Here is the process of rapid record retrieval with Datavant Switchboard:
- Send a patient-authorized request to Datavant or use Datavant’s HIPAA-compliant medical record release tool in which oncology patients can provide their authorization directly
- Based on project requirements, Datavant selects the right channels to retrieve the medical record – this includes our hundreds of digital connections as well as leveraging our distributed services team
- Receive searchable medical records back from Datavant, with completed request submission, payment, and optical character recognition (OCR) for all documents
- Set up a recurring medical record request at any interval at the start of a project
In summary, the Datavant Switchboard creates a single request starting point and routes that request to the right channel – whether that be the health system, EHR vendor, or data aggregator – maximizing yield and minimizing turnaround time.
This multi-modal approach also maximizes the chance of obtaining all required information and allows for “last mile retrievals” often required to obtain the hard-to-get charts. This can help ensure that no bias or health equity issues are introduced by leaving out charts from patients in rural or community health settings. It can also ensure that patients with the most complex conditions (corresponding to more sites of care) aren’t neglected.
This is only the beginning. In the years ahead, we will be investing massively to digitize the process of record retrieval across tens of thousands of provider organizations, building a utility that can be leveraged by the entire industry for rapid and compliant access to patient information. As a result, our customers and partners will be able to re-focus their energy on deriving novel clinical insights, enrolling patients in clinical trials, building registries to inform public health, and improving patient care.