If the United States is going to improve cancer-related outcomes, it must overcome serious policy and technical barriers preventing the country from achieving a nationwide, interoperable health IT system.
That’s among the findings of the President’s Cancer Panel, which issued its latest report to the Obama White House on Tuesday.
“Although technologies have been widely adopted in healthcare settings as well as among the general population, health information often remains trapped in silos,” according to the President’s Cancer Panel. “Patients, caregivers, care teams, researchers and health agencies often lack the tools they need to access and optimally use these data.”
However, the panel concludes that connected health—defined as the use of technology to facilitate the efficient and effective collection, flow and use of health information—can be the “catalyst for making cancer prevention, care and research advances that benefit every person in this country and beyond, helping to achieve the Cancer Moonshot goal of doubling the rate of progress against the disease over the next five years.”
To accomplish this, health IT systems and software applications must be able to communicate with one another, exchange data and use the information that has been exchanged. This kind of interoperability is critical for oncology because the “delivery of care across the cancer continuum depends on access to accurate and complete information, as well as extensive coordination among patients, caregivers and diverse teams of providers.”
Among the panel’s recommendations:
- Health IT stakeholder groups should continue to collaborate to overcome policy and technical barriers to a nationwide, interoperable HIT system.
- Technical standards for information related to cancer care across the continuum should be developed, tested, disseminated and adopted.
- Standard, open application programming interface (API) platforms should be developed and used to facilitate the development of cancer-related apps.
The report pointed out that electronic health record systems at different organizations—even those created by the same vendor—often are not interoperable.
“Unprecedented amounts of data about people at risk of cancer and cancer patients are being collected in medical records, as part of research studies and by individuals themselves,” according to the panel. “In the past, health data remained wherever they were collected and generally were used in limited ways to serve the specific needs of whoever collected them. These silos represent a significant missed opportunity.
“Connected health technologies have an important role to play by facilitating linkages of systems and data sets and creating tools that enable researchers, clinicians and patients to use data in meaningful ways.”
While the panel emphasized the positive role that EHRs can potentially play, it also noted that EHRs have contributed to providers’ frustration and professional burnout and that poor EHR usability is a major barrier to advancing connected health for cancer.
“The transition to EHRs will not be reversed, and few physicians wish to return to paper-based medical records. However, the significant challenges that have arisen during the initial rollout of EHRs should be addressed, and more work is needed to ensure interfaces are intuitive and aligned with care teams’ workflows,” stated the report.
According to the panel, EHR vendors and healthcare organizations should employ human-centered design principles to ensure that EHR interfaces are intuitive and aligned with providers’ workflows. In addition, it concluded that “efforts are needed to ensure that federal programs and health IT tools support the oncology workforce as it strives to deliver the best possible care,” including apps.
Enhancing linkages between EHRs and cancer registries is another area requiring serious improvement. The panel would like to see automatic reporting of data from EHR systems to central cancer registries.
“The ONC 2015 Health IT Certification Criteria require EHRs to be capable of compiling cancer case information for transmission to central cancer registries and identify the CDC guidance as the standard for this transmission. However, implementation of processes that enable automatic transmission of cancer data from EHRs to central registries has been slow,” according to the report.
The panel said that impediments to more widespread EHR-Cancer registry implementation include:
- Lack of cancer-reporting functionality in many EHRs
- EHR workflows that are not conducive to entering data elements needed by cancer registries
- Limited resources within central cancer registries for receiving, validating and processing EHR data
- Issues with quality and completeness of data transmitted from EHRs
In putting together its report, the panel conducted a series of workshops nationwide in 2014 and 2015 to explore the role and potential of connected health in cancer, with the goal of identifying ways to optimize the development and use of technologies to promote cancer prevention, enhance the experience of cancer care for patients and providers and accelerate progress in cancer research.
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