eSyM: An Electronic Health Record-Integrated Patient-Reported Outcomes-Based Cancer Symptom Management Program Used by Six Diverse Health Systems

Abstract

Purpose: Collecting patient-reported outcomes (PROs) can improve symptom control and quality of life, enhance doctor-patient communication, and reduce acute care needs for patients with cancer. Digital solutions facilitate PRO collection, but without robust electronic health record (EHR) integration, effective deployment can be hampered by low patient and clinician engagement and high development and deployment costs. The important components of digital PRO platforms have been defined, but procedures for implementing integrated solutions are not readily available.

Methods: As part of the NCI's IMPACT consortium, six health care systems partnered with Epic to develop an EHR-integrated, PRO-based electronic symptom management program (eSyM) to optimize postoperative recovery and well-being during chemotherapy. The agile development process incorporated user-centered design principles that required engagement from patients, clinicians, and health care systems. Whenever possible, the system used validated content from the public domain and took advantage of existing EHR capabilities to automate processes.

Results: eSyM includes symptom surveys on the basis of the PRO-Common Terminology Criteria for Adverse Events (PRO-CTCAE) plus two global wellness questions; reminders and symptom self-management tip sheets for patients; alerts and symptom reports for clinicians; and population management dashboards. EHR dependencies include a secure Health Insurance Portability and Accountability Act-compliant patient portal; diagnosis, procedure and chemotherapy treatment plan data; registries that identify and track target populations; and the ability to create reminders, alerts, reports, dashboards, and charting shortcuts.

Conclusion: eSyM incorporates validated content and leverages existing EHR capabilities. Build challenges include the innate technical limitations of the EHR, the constrained availability of site technical resources, and sites' heterogenous EHR configurations and policies. Integration of PRO-based symptom management programs into the EHR could help overcome adoption barriers, consolidate clinical workflows, and foster scalability and sustainability. We intend to make eSyM available to all Epic users.

Conflict of interest statement

Michael J. HassettResearch Funding: IBM Jason WedgeEmployment: EpicStock and Other Ownership Interests: Epic Don S. DizonConsulting or Advisory Role: i-Mab, Clovis Oncology, AstraZeneca, Regeneron, Tesaro, Pfizer, Oasmia Pharmaceutical ABResearch Funding: Bristol Myers Squibb (Inst), Kazia Therapeutics (Inst), Pfizer (Inst)Open Payments Link: https://openpaymentsdata.cms.gov/physician/744193/summary Raymond U. OsarogiagbonStock and Other Ownership Interests: Lilly, Pfizer, Gilead SciencesHonoraria: Biodes, MedscapeConsulting or Advisory Role: Association of Community Cancer Centers (ACCC), AstraZeneca, American Cancer Society, Triptych Health Partners, Genentech/Roche, National Cancer InstitutePatents, Royalties, Other Intellectual Property: Two US patents and one China patent for lymph node specimen collection kit and method of pathologic evaluationOther Relationship: Oncobox Ethan BaschConsulting or Advisory Role: SIVAN Innovation, Carevive Systems, Navigating Cancer, AstraZenecaOther Relationship: Centers for Medicare and Medicaid Services, National Cancer Institute, American Society of Clinical Oncology, JAMA-Journal of the American Medical Association, Patient-Centered OUtcomes Research Institute (PCORI)Open Payments Link: https://openpaymentsdata.cms.gov/physician/427875/summary Toby AustinEmployment: Epic SystemsStock and Other Ownership Interests: Epic Systems Nadine McClearyResearch Funding: Bristol Myers Squibb Foundation Deborah SchragStock and Other Ownership Interests: Merck (I)Honoraria: PfizerConsulting or Advisory Role: JAMA-Journal of the American Medical AssociationResearch Funding: AACR (Inst), GRAIL (Inst)Patents, Royalties, Other Intellectual Property: PRISSMM model is trademarked, and curation tools are available to academic medical centers and government under creative commons licenseOther Relationship: JAMA-Journal of the American Medical AssociationNo other potential conflicts of interest were reported.

Figures

FIG 1.

Overview of eSyM. ED, emergency department; EHR, electronic health record; eSyM, electronic symptom management; PRO, patient-reported outcome; SIMPRO, Symptom Management Implementation of Patient-Reported Outcomes in Oncology.

FIG 2.

eSyM questionnaire items. eSyM questionnaires includes 12 required symptom items, two required general context items, and up to 20 optional symptom questions. Symptom questions are based on the PRO-CTCAE, which asks one-three questions per symptom and aggregates responses into a four-point scale (0 = no symptoms, to 3 = severe symptoms). The complete PRO-CTCAE questionnaire system and terms of use can be accessed at the National Cancer Institute. eSyM, electronic symptom management; PRO-CTCAE, Patient-Reported Outcome-Common Terminology Criteria for Adverse Events.

FIG 3.

Patient-facing eSyM tools. Four views of the smartphone version of MyChart, Epic's patient-facing mobile application (from left to right). (A) The MyChart mobile home screen with a link to the eSyM program. (B) The eSyM Welcome Page, where the user can answer questionnaires, view past responses, and access tip sheets. (C) The eSyM questionnaire for pain, where the patient reports the severity, frequency, and interference of selected symptoms. (D) The eSyM Patient Alert Screen, which is presented to patients who have reported severe symptoms. eSyM, electronic symptom management.

FIG 4.

Key clinician-facing eSyM tools. (A) The eSyM dashboard shows key performance indicators and can be used to access reporting workbench reports that facilitate population management. It can be customized by each user to focus on a clinician, department, or service area. (B) The Symptom Management Report shows all submitted questionnaires from the past week. It is color-coded to highlight patients reporting severe symptoms and includes tool-tips that show symptom trends. It can be filtered and sorted on the basis of multiple features including symptom severity. Additional symptom scores and trends are displayed by hovering over the severe symptom indicator column. eSyM, electronic symptom management.

FIG 5.

Process flow for eSyM. Automated (Epic-based) functionality occupies the center swim lane, with adjacent swim lanes indicating tasks accomplished by the patients, the program nurses who provide supportive care, the MD, NP, and PA staff who oversee care, and the programmatic staff who support the eSyM program. Medical oncology patients are considered active on eSyM until their chemotherapy treatment plan is discontinued or 180 days later, whichever comes first. Surgery patients are considered active on eSyM for 60 days. eSyM assignments can be manually removed at any time by study staff. Red dashed lines indicate processes that may be site specified (ie, may only be used on some sites). DAR, department appointment report; eSyM, electronic symptom management; MD, medical doctor; NP, nurse practitioner; PA, physician assistant; RN, registered nurse; RWB, reporting workbench.

FIG 6.

Examples of eSyM challenges and solutions. EHR, electronic health record; ePRO, electronic patient reported outcome; eSyM, electronic symptom management; PRO-CTCAE, Patient Reported Outcome-Common Terminology Criteria for Adverse Events.