A powerful partnership: researchers and patients working together to develop a patient-facing summary of clinical trial outcome data

Emily Ruzich; Jason Ritchie; France Ginchereau Sowell; Aliyah Mansur; Pip Griffiths; Hannah Birkett; Diane Harman; Jayne Spink; David James; Matthew Reaney

doi:10.1093/jamia/ocad099

A powerful partnership: researchers and patients working together to develop a patient-facing summary of clinical trial outcome data

J Am Med Inform Assoc. 2024 Jan 18;31(2):363-374. doi: 10.1093/jamia/ocad099.

Authors

Affiliations

¹ Patient Centered Solutions, IQVIA, Boston, Massachusetts, USA.
² Patient Centered Solutions, IQVIA, New York, New York, USA.
³ Patient Centered Solutions, IQVIA, London, UK.
⁴ Patient Centered Solutions, IQVIA, Paris, France.
⁵ Medical and Patient Communications, IQVIA, Reading, UK.
⁶ Prostate Cancer Research, London, UK.
⁷ Patient Centered Solutions, IQVIA, Reading, UK.

Abstract

Objective: Availability of easy-to-understand patient-reported outcome (PRO) trial data may help individuals make more informed healthcare decisions. Easily interpretable, patient-centric PRO data summaries and visualizations are therefore needed. This three-stage study explored graphical format preferences, understanding, and interpretability of clinical trial PRO data presented to people with prostate cancer (PC).

Materials and methods: A 7-day online survey exploring people with PC's preferences for different PRO data presentations (stage 1; n = 30) informed development of a draft plain-language resource sheet containing PRO data. After refining for clarity during cognitive debriefing interviews (stage 2; n = 18), the final resource sheet was circulated to people with PC for broader feedback (stage 3; n = 45).

Results: Although participants expressed preferences for certain graphical formats (pie charts and bar charts), preference did not always associate with interpretability and overall message clarity. Iterative development (stages 1 and 2) led to a final resource sheet, which 91.1% of participants in stage 3 considered useful and informative, and 88.9% expressed interest in receiving similar resources in the future.

Discussion: Findings demonstrate PRO data are relevant to people with PC and highlights that targeted resource sheets can support patient-clinician discussions. Appropriate graphical formatting and use of plain-language text is essential for conveying interpretable PRO data. Data visualization preferences are context dependent.

Conclusion: Resource sheets summarizing clinical trial PRO data can be helpful for decision-making in PC. Researchers and patients can work together to develop clear, relevant, sensitive, and understandable resource sheets, which equally consider patient priorities as well as those of scientists.

Keywords: data visualization; health communication; patient-reported outcome measure; prostatic neoplasms; qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Clinical Trials as Topic
Humans
Male
Patient Reported Outcome Measures*
Research Personnel*
Surveys and Questionnaires

Grants and funding

IQVIA