Improving the impact of clinical documentation through patient-driven co-design: experiences with cancer pathology reports. Issue 3 (17th December 2020)

• Record Type: Journal Article
• Authors: Austin, Elizabeth J; Lee, Jenney R; Ko, Cynthia W; Kilgore, Mark R; Parker, Elizabeth U; Bergstedt, Brandelyn; Mitchell, Anita I; Javid, Sara H; Gore, John L
• Is Part Of: BMJ health & care informatics. Volume 27:Issue 3(2020)
• Publication Date: 2020-12-17
• Subjects: patient care -- medical informatics -- BMJ health informatics; Medical informatics -- Great Britain -- Periodicals; Information storage and retrieval systems -- Medical care -- Periodicals; Primary care (Medicine) -- Great Britain -- Data processing -- Periodicals; 362.10285
• DOI: 10.1136/bmjhci-2020-100197
• Languages: English
• ISSNs: 2632-1009

Abstract

Abstract : Objective: With the unprecedented rise of patient access to clinical documentation through electronic health records, there is a need for health systems to understand best practices for redesigning clinical documentation to support patient needs. This study used an experience-based co-design approach to inform the redesign of cancer pathology reports to improve their patient-centeredness and impact on patient engagement. Materials and methods: Multiple methods for data collection and stakeholder engagement were used, including Delphi prioritisation with breast and colorectal cancer experts (n=78) and focus groups with patients with cancer (n=23) in the Seattle area. Iterative rounds of consensus generation and reflection were used to elicit themes and design recommendations for the development of patient-centred pathology reports on cancer care. Results: Although each cancer type had nuanced elements to consider, common design requirements emerged around two key themes: (1) clinical documentation language should be framed in a way that informs and engages patients, and (2) clinical documentation format should be leveraged to enhance readability and information flow. Study activities illuminated detailed recommendations to improve the patient-centeredness of pathology reports based on patients' and clinicians' lived experience. Discussion: The design requirements that emerged from this study provide a framework that can guide the rapid development of patient-centred pathology reports for all cancer types. Even further, health systems can replicate these methods to guide experience-based co-design of clinical documentation for contexts beyond cancer care. Conclusion: This work offers practice-based learnings that can more effectively guide health systems in their clinical documentation redesign efforts.