Health data standards are critical to digital health transformation. However, inconsistent adoption across the care continuum has hampered efforts to leverage EHR data for secondary purposes, such as research, analytics, and quality reporting.
Organizational capacity and clinician behavior change largely stand in the way of health data standards adoption, according to Harvey Jenner, principal of real-world solutions at IQVIA, a health IT company.
Some healthcare organizations do not have the resources to stay abreast of the ever-changing health data standards landscape. And, even if a health system does have health IT bandwidth to establish standards within EHRs, clinicians are often not mandated to use the standards.
"There's not necessarily one single standard that you should be using for certain disease areas or certain conditions," Harvey told EHRIntelligence in an interview. "Sometimes the hospital or the department mandates certain ones, and sometimes there is a national mandate that requires you to follow them, and sometimes it is just your own decision on what you're utilizing."
When given the choice of whether to adopt new data standards or stick to what they know, clinicians often choose the latter. After all, new data standards could represent a workflow change that isn't palatable—or feasible—for overworked clinicians.
"A lot of physicians are very structured in the way that they do things, so changes in terms of what they need to do is often met with resistance," he pointed out. "Making these behavioral changes is a big issue for getting physicians on board with utilizing data standards that are not mandated."
For example, instead of using data standards, clinicians often choose to document patient data in unstructured free-text narratives, according to Angela Kennedy, senior director of provider and patient associations at IQVIA.
If clinical information is entered as a narrative, extracting information and mapping it to data standards is challenging. Healthcare organizations can leverage natural language processing (NLP) tools to map data elements present in unstructured text to structured fields. However, this is not an option for many resource-strapped hospitals.
Kennedy noted that medical specialty societies can play a large role in improving standards adoption across the care continuum.
"Specifically in the US, medical specialty societies have a lot of clout and reputation for representing the specialty and driving the specialty forward, and their members are often a diverse sampling of the representatives of that specialty," Kennedy said. "They have the gathering power and the collaboration power to be able to get a sampling across those in the field about what standard should be used."
With 15 years of background in medical specialty societies, including the American Society of Radiation Oncology (ASTRO) and the American Society of Clinical Oncology (ASCO), Kennedy saw firsthand how these organizations have made strides in specialty-specific data standards.
For instance, The Minimal Common Oncology Data Elements (mCODE) project led by ASCO is a consensus data standard created to facilitate the transmission of data for patients with cancer. ASCO brought together a workgroup of oncologists, informaticians, experts in terminologies and standards, and researchers to develop the standard.
The specification includes six high-level domains: patient, laboratory/vital, disease, genomics, treatment, and outcome.
"The example of mCODE that ASCO is driving with a couple of other specialty societies is a good example of a specialty society having not only the convening power that they have of their members, but also reaching out across other specialties that are in the same therapeutic area and information systems that would be capturing this data," Kennedy said.
"The more standardized the data, the more useful it is for secondary purposes," she emphasized.
While she was at ASCO, Kennedy worked to ensure that mCODE captured the granularity of the information ASCO needed for its clinical data registry.
Clinical data registries record information about patients' health status and the care they receive over time. Typically, these registries focus on patients who share a common reason for seeking care, which allows physicians to see what treatments are available and how patients with various characteristics respond to certain treatments.
By developing a specification for common oncology data elements, ASCO was also able to help alleviate the administrative burden associated with reporting data to the clinical data registry.
"Physician burden is probably top on the list of the value of medical specialty societies being involved in data standardization," Kennedy said.
While achieving fully standardized datasets may be challenging, partial adoption of data standards can still provide immense benefits, she pointed out.
Partial adoption provides usable data that organizations can leverage for downstream efforts, including clinical data registries. This data, even if not 100 percent standardized, can still be valuable for research, quality improvement, and more.
"Standards are becoming more and more necessary as we keep increasing the value that we're getting from data," said Harvey. "Data is used for a whole range of purposes across the healthcare spectrum from making treatment decisions in clinical practice to financial decisions at the hospital level to research downstream, so making those standards is really important."
"I think that there is the ability now, with technology and with a joint mission, to start to encourage improvement in the implementation of these standards," he noted.
For example, the United States Core Data for Interoperability (USCDI) is a national effort to improve data standards. ONC launched the project to create a standardized set of health data classes and constituent data elements for interoperable health information exchange (HIE).
Kennedy likened the USCDI initiative to a "clearing house" for medical specialty societies to submit their data standardization needs.
"Medical specialty societies can play a role in training physicians in terms of new standards and bringing everyone to the table so that the data standard meets multiple needs," Harvey emphasized. "That could be through adoption of these within the EHR systems, educational efforts, and conferences and other areas like that."
While challenges exist, the collaborative efforts of medical specialty societies, healthcare organizations, and technological advancements are paving the way for a more standardized and data-driven healthcare future.