Innovation in Electronic Health Records for Oncology Care, Research, and Surveillance Proceedings of a Workshop (2023) / Chapter Skim
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Proceedings of a Workshop
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This virtual workshop featured presentations and panel discussions on a range of topics, including • optimizing the functionality and usability of EHRs in oncology care; • standardization of oncology EHR documentation to facilitate care and communication between clinicians and patients; • enhancing EHR structure, data standardization, and interoperability to improve care and enable real-world data collection and sharing for research, surveillance, and quality improvement; 1 This workshop was organized by an independent planning committee whose role was limited to identification of topics and speakers. This Proceedings of a Workshop was prepared by the rapporteurs as a factual summary of the presentations and discussions that took place at the workshop.
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(Box 1 includes observations on the current capabilities and use of EHRs in cancer care, and Box 2 outlines potential strategies for advancing the development, implementation, and use of EHRs in oncology care, research, and surveillance.) Appendix A includes the Statement of Task for the workshop.
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• Critical data needed for clinical decision making can be dif ficult to find in the EHR and need to be more prominently and clearly displayed, unobstructed by less critical data, with an understanding that essential data elements can vary by clinical specialty. (Anders, Carayon, Shulman)
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• Collective will and policy change are needed to drive the adoption of standardized data formats and structured data collection to enable the entry of data into the EHR once for use across multiple purposes (e.g., decision support, quality improvement efforts, research)
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• Use data science principles for interpretation of EHR data. (Hripcsak)
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• Identify and collect the information most needed by the end users of EHR data, including clinicians and patients (e.g., critical data for shared decision making, information on social determinants of health)
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• Build a national health data sharing platform to leverage the full potential of EHR-based, real-world data for patient care and research. Develop a standard data set and interface and incentivize participation.
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• Longitudinal treatment plan management Another important EHR feature for oncology care is longitudinal management of the patient treatment plan. This includes, for example, automated medication dose calculations, complex treatment scheduling and medication sequencing, and integrated safety checks, as well as access to libraries of standard-of care treatment protocols and clinical trial protocols.
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Levy said that HIE occurs when EHR systems facilitate the direct sharing of patient health records, which is "a vital part of decreasing health care costs and improving the quality of care." She noted that there is still much work to be done to enable interoperability across health systems. • Telehealth The uptake of telehealth for patient care that does not require an inpatient visit expanded dramatically during the COVID-19 pandemic, Levy said.
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He suggested that a similar approach is needed for how EHRs display data if they are to support safe and effective oncology care. He argued that critical patient data be "unencumbered by unneeded information, .
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suggested that increasing the efficiency of oncology care by improving the functionality and efficiency of EHRs "may be the only solution that will allow clinicians to care for more patients without extending work hours" (Shulman et al., 2020; see also NASEM 2019)
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. Many workshop speakers discussed reimagining clinical documentation, given that patients are now a primary user of the EHR.
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For example, a radiologist who reviews and interprets a CT scan or X-ray might never meet the patient or know the context of their overall care plan, unlike their oncologist. Neal Meropol, vice president of research oncology at Flatiron Health, recalled that when patient portals were first launched, there were some concerns about patients seeing their clinical results before the physician could discuss the clinical significance of the results.
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For example, using a NLP tool, researchers were able extract from the clinical notes in EHRs information on social isolation and loneliness in patients with prostate cancer (Zhu et al., 2019) , but HughesHalbert noted that some of the language that clinicians used to document social isolation could be considered stigmatizing or could be potentially offensive to a patient reading their chart.
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Cancer care QI initiatives that are or could be enabled by EHRs include measurement of concordance with clinical practice guidelines and quality metrics, benchmarking, treatment decision support, risk prediction modeling, and prompts or nudges for clinicians (e.g., to order a diagnostic test or document particular information)
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He suggested that more structured data be collected within EHRs in order to improve the functionality of EHR data for downstream users (e.g., clinical care, research, QI)
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focused on the use of EHRs to improve the conduct of clinical trials.9 To achieve the goal of having an integrated EHR-based evidence generation platform and QI system, Meropol stressed that the clinical and research communities will need to "incentivize high-quality data entry, legislate interoperability, promote adoption of data standards, and normalize data sharing with appropriate privacy protections." IMPROVING THE PATIENT-FACING ASPECTS OF EHRs As previously discussed, patients are a key user of the EHR. Many workshop speakers discussed opportunities to improve patient-facing aspects of the EHR to enable patient–clinician communication with the goal of improving cancer care and patient outcomes.
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In a survey of patients undergoing radiation therapy, most (greater than 90 percent) felt that having access to their clinical notes gave them a better understanding of their diagnosis and the risks and side effects of their treatments and provided information they had missed during the in-person visit.
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could enhance understanding without burdening physicians or compromising the quality of records," said Patel. She also called for oncology clinician education and training to include guidance on using more supportive, inclusive language in their clinical notes.
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The PRO data in the EHR can be used by clinicians for individual patient management, by patient care coordinators for risk stratification to identify FIGURE 3 Integrating patient self-reporting of symptoms into the EHR workflow. SOURCE: Basch presentation, February 28, 2022.
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Several workshop speakers discussed opportunities for improving ePRO implementation in cancer care. Basch called for CPT codes to be modified to accommodate the use of ePROs in oncology care.
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mCODE will support a standard health record for patients with cancer that will enable information exchange among key participants in cancer care and cancer research, including patients, clinicians, payers, researchers, EHR vendors, and regulators, Osterman said. He added that there is broad community engagement to support the development and implementation of mCODE.14 Osterman reviewed some of the key challenges that will need to be addressed to improve data sharing across EHR systems.
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Using the EHR to Nudge Evidence-Based Cancer Care "Whether intentional or not, the design of the EHR and its patient-facing applications already affect clinician and patient behavior," Takvorian said. He said there is an opportunity to leverage the EHR as a tool to nudge -- or change the way choices are presented that alters behavior predictably but without restricting choice -- to improve patient outcomes.15 In health and health care, for example, a nudge can raise a patient's or clinician's awareness of a choice before them and of the health-related benefits of each choice (e.g., taking the stairs versus the escalator, prescribing a generic versus brand therapy)
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. He said there are ongoing efforts to address this, including the 25x5 Initiative of the American Medical Informatics Association (AMIA)
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. Key Considerations for the Next Generation of EHRs Many workshop speakers discussed opportunities for next-generation EHRs to improve patient care.
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He said that EHRs have a potential role in promoting health equity in cancer care by, for example, countering implicit biases through more objective assessments and clinical decision-support recommendations. However, disparities could also be exacerbated by differences in patient ability to access or interact with their EHR or ancillary applications.
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Many workshop speakers discussed opportunities to improve the functionality of EHRs in supporting care management, patient safety, and critical decision making; how an iterative human-centered design approach can be used to build EHR systems that better integrate into the clinical workflow and better meet the needs of patients across the cancer care continuum; and the importance of interoperability of systems. Critical Decision Support Many workshop speakers discussed the design and role of decision support tools that integrate clinical pathways within EHR systems to facilitate the delivery of evidence-based, safe, efficient, and high-value patient care.
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She defined clinical pathways as a set of clinical decision support rules that integrate evidence regarding clinical effectiveness, potential risks for toxicity, and the cost of treatment in order to create optimal standard-of-care treatment recommendations for patients and reduce unnecessary variation in care. Zon said the vision for integrating clinical pathways within an EHR system is • to help ensure the patient has comprehensive, high-quality, cost-effective, patient-centered care across the entire continuum of cancer care; • to serve as a platform for knowledge management and patient and clinician education about interventions; and • to promote value-based care through the collection and analysis of pathway utilization data.
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, and the national physician lead for the KP HealthConnect Oncology Beacon module, described the internal development and implementation of KP National Oncology Drug Treatment Pathways, an evidence-based EHR-integrated decision support tool that Ichiuji said enables the equitable delivery of cancer care to Kaiser Permanente members. Kaiser Permanente serves 12.5 million members in eight regions of the United States, and its 305 oncologists order more than 60,000 treatment plans per year, said Ichiuji.
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An initial clinical pathway draft was developed by regional subspecialty groups, and after a national subspecialty consensus process and approval by the governance group of interregional oncology chiefs, the clinical pathways were integrated into the KP clinical library and linked to the EHR through Beacon. Ichiuji said KP determined that the clinical pathways needed to be viewable from the EHR or the intranet, orderable from the patient chart, and utilize a minimal number of clicks to move from the chart to the clinical library and through the ordering process.
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Kaiser Permanente is now working to build a comprehensive cancer pathway to support patients across the continuum of cancer care, which Ichiuji said will include decision support and population health tools for risk stratification, screening and automated outreach, diagnosis, molecular genomics, treatment, symptom management, self-care and psychosocial support, survivorship surveillance, and healthy-lifestyle engagement. She added that patient voices are incorporated into this process.
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Human-centered design provides "opportunities to more closely align the fit of the EHR to the cancer care system," by asking questions about how clinicians and patients use the EHR and what their needs are. For example, what is the best way to get new information to clinicians?
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Finally, Mynatt suggested that oncology clinical pathways and the patient's experiences across the cancer care continuum could 19 Mynatt stated that her presentation was drawn largely from the dissertation work of her former student, Maia Jacobs, while at the Georgia Institute of Technology.
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Although information from clinical pathways is used to support the patient's care, she proposed that information from the patient experience be better integrated and leveraged to refine the decision support tools within clinical pathways. Systems Engineering for EHR Design in Oncology Care Pascale Carayon, professor emerita in the department of industrial and systems engineering at the University of Wisconsin–Madison and founding director of the Wisconsin Institute for Healthcare Systems Engineering, described the Systems Engineering Initiative for Patient Safety (SEIPS)
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These included redesigning the placement of products in the medication drawer of a code cart to improve the safety and efficiency of drug administration (Rousek and Hallbeck, 2011) , and redesigning the EHR interface used by clinicians in the intensive care unit for more efficient and clear presentation of critical data to support decision making (Pickering et al., 2010)
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Carayon called for EHR technologies to be designed to support patients across the entire cancer care continuum, taking into consideration evolving work systems and fluid care teams -- who are situated across time, space, and organizations -- and incorporating interfaces that support care coordination (Lichtner and Baysari, 2021; Lichtner et al., 2020)
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Mynatt said some information, such as certain PROs, can help to guide clinical decision making, but this type of information also has value outside the EHR. For example, cancer care navigators can use this information to identify community needs.
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She observed that some clinicians do not routinely access clinical decision support tools and resources, such as treatment guidelines or clinical pathways. However, she stressed that the volume and complexity of the data potentially available to guide decision making is ever increasing, so individual clinicians cannot possibly keep up to date on the advances in oncology care.
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She concurred with others that aggregated EHR data are often incomplete because many clinicians are still recording critical data elements in an unstructured, text-based format in the clinical note. "The mantra of efficient data use is collect it once, use it many times," Bertagnolli said.
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Opportunities to Improve the Usability of EHRs for Research Purposes Jeremy Warner, adjunct associate professor of medicine at Vanderbilt University, discussed challenges and opportunities associated with using EHRs for research purposes. The structured data elements in the EHR include the International Classification of Disease (ICD)
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Warner referred participants to the Informatics Technology for Cancer Research program at the NCI for more information about ongoing research to address informatics needs across the cancer continuum.23 Opportunities to Improve EHR Data Collection to Support High-Quality Care and Value Payers need actionable and comprehensive data to achieve their goal of enhancing value in the delivery of health care, said Reed Tuckson, cofounder of 23 See https://itcr.cancer.gov (accessed May 18, 2022)
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Warner suggested that health professional education and training programs prioritize best practices for clinical documentation and emphasize the importance of entering structured data where possible. To receive buy-in from clinical practices, Haddad suggested focusing less on the technologies themselves and more on how using them could help solve some of the challenges clinicians and oncology practices are facing (e.g., reducing administrative and cognitive burdens, keeping up to date with the rapid advancement of medical knowledge, facilitating clinical trial enrollment, addressing disparities in health care)
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, and CMS discussed the role of federal partners in helping to advance the functionality and usability of EHRs for cancer care, surveillance, and research. OSTP: The Role of Science and Technology Policy in Advancing EHRs The federal government is a producer and a consumer of innovation, and also a benefactor and a beneficiary of the products of innovation, said Bich-Thuy (Twee)
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The NCI: Using EHR Data for Cancer Surveillance Lynne Penberthy, associate director for the Surveillance Research Program in the Division of Cancer Control and Population Sciences at the NCI, explained that under state public health recording laws, central cancer registries are legally authorized to access health records. Because much of the relevant data for cancer surveillance are in unstructured text formats in EHRs, surveillance currently requires manual review, annotation, and extraction of data, which Penberthy said is estimated to require more than 60,000 person-hours per year.
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The NCI is testing and implementing several solutions to address the gaps and reduce the biases that this could introduce into the data. In the second use case, the NCI is creating linkages with selected genomic pathology laboratories that can provide comprehensive data for all patients receiving a particular genetic test (e.g., Oncotype DX 21 gene assay for breast cancer, Oncotype and Decipher multigene panels for prostate cancer, DecisionDX multigene panel for melanoma)
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that provides data sharing and processing services. She noted that 90 percent of State Central Cancer Registries are now able to receive pathology reports from APHL's AIMS cloud platform.
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, which exacerbates health inequities. To promote equitable access to evidence-based cervical cancer screening, the CDC is working with MITRE Health to develop a clinical decision support tool that converts cervical cancer screening guidelines into a computable format.
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Real-world evidence is "the clinical evidence about the usage and potential benefits or risks of a medical product derived from real-world data." Real-world data are "data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources." EHRs are one source of real-world data. Although real-world data sources have been used primarily for nonrandomized, retrospective, observational studies, Kluetz said that EHR data can be leveraged for prospective randomized controlled trials, decentralized trials, and pragmatic trials as well.
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For example, Shanbhag said ONC is collaborating with the CDC to develop standards for the development of EHR-integrated clinical decision support technology. CMS: Enabling EHRs to Better Support Health Care Data Exchange Lara Strawbridge, director of the Division of Ambulatory Payment Models at the CMS Center for Medicare and Medicaid Innovation (CMMI)
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She added that CMS is planning to undertake rulemaking to address some of the specific operational challenges pertaining to payer-to-payer data exchange. Other CMS activities to promote interoperability include aligning with ONC's USCDI initiative (the standardized vocabulary for core data elements, previously discussed by Shanbhag)
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Richardson said that SDOH data are not consistently captured in EHRs. She referred participants to a prior National Cancer Policy Forum workshop that examined SDOH in the context of cancer and discussed opportunities to capture SDOH data for patients with cancer.46 Sim said that OSTP has recently formed an SDOH interagency policy committee to engage collaborators to understand end-user data needs.
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Coordinating EHR-Related Efforts across Federal Agencies and with Partners Multiple federal agencies have interests in improving the functionality and usability of EHRs for cancer care, surveillance, and research, said Nicole Dowling, associate director for science in the CDC Division of Cancer Prevention and Control. She noted that many speakers highlighted the need to prioritize and improve coordination of efforts across agencies and with nonfederal partners.
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• Clinical decision support Locally configured oncology clinical decision support tools are being implemented in EHRs, and there were examples of how they can be updated rapidly when needed (e.g., to address a medication shortage)
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2022. Quantitating and assessing interoperability between electronic health records.
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community oncologists in the era of electronic health records. JCO Oncology Practice 16(4)
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2020. Oncology health-care professionals' perceived effects of patient accessible electronic health records 6 years after launch: A survey study at a major university hospital in Sweden.
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2020. The future of cancer care in the United States -- overcoming workforce capacity limitations.
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BMC Medical Informatics Decision Making 19(1)
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