{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,13]],"date-time":"2026-06-13T07:15:05Z","timestamp":1781334905402,"version":"3.54.1"},"reference-count":48,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2023,6,21]],"date-time":"2023-06-21T00:00:00Z","timestamp":1687305600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"IQVIA"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,1,18]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>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).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>A 7-day online survey exploring people with PC\u2019s preferences for different PRO data presentations (stage 1; n\u2009=\u200930) informed development of a draft plain-language resource sheet containing PRO data. After refining for clarity during cognitive debriefing interviews (stage 2; n\u2009=\u200918), the final resource sheet was circulated to people with PC for broader feedback (stage 3; n\u2009=\u200945).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion<\/jats:title>\n                  <jats:p>Findings demonstrate PRO data are relevant to people with PC and highlights that targeted resource sheets can support patient\u2013clinician discussions. Appropriate graphical formatting and use of plain-language text is essential for conveying interpretable PRO data. Data visualization preferences are context dependent.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocad099","type":"journal-article","created":{"date-parts":[[2024,1,19]],"date-time":"2024-01-19T07:32:17Z","timestamp":1705649537000},"page":"363-374","source":"Crossref","is-referenced-by-count":9,"title":["A powerful partnership: researchers and patients working together to develop a patient-facing summary of clinical trial outcome data"],"prefix":"10.1093","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6612-7600","authenticated-orcid":false,"given":"Emily","family":"Ruzich","sequence":"first","affiliation":[{"name":"Patient Centered Solutions, IQVIA , Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason","family":"Ritchie","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , New York, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"France","family":"Ginchereau Sowell","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , New York, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aliyah","family":"Mansur","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pip","family":"Griffiths","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Birkett","sequence":"additional","affiliation":[{"name":"Medical and Patient Communications, IQVIA , Reading, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diane","family":"Harman","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , New York, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jayne","family":"Spink","sequence":"additional","affiliation":[{"name":"Prostate Cancer Research , London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"James","sequence":"additional","affiliation":[{"name":"Prostate Cancer Research , London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthew","family":"Reaney","sequence":"additional","affiliation":[{"name":"Patient Centered Solutions, IQVIA , Reading, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2023,6,21]]},"reference":[{"key":"2024011907300480800_ocad099-B1","year":"2018"},{"key":"2024011907300480800_ocad099-B2","year":"2018"},{"key":"2024011907300480800_ocad099-B3","year":"2020"},{"key":"2024011907300480800_ocad099-B4","year":"2018"},{"key":"2024011907300480800_ocad099-B5","year":"2020"},{"key":"2024011907300480800_ocad099-B6","doi-asserted-by":"crossref","first-page":"353","DOI":"10.2147\/PROM.S156279","article-title":"The importance of patient-reported outcomes in clinical trials and strategies for future optimization","volume":"9","author":"Mercieca-Bebber","year":"2018","journal-title":"Patient Relat Outcome Meas"},{"issue":"4","key":"2024011907300480800_ocad099-B7","doi-asserted-by":"crossref","first-page":"381","DOI":"10.1093\/heapro\/dag409","article-title":"Shortcomings of health information on the Internet","volume":"18","author":"Benigeri","year":"2003","journal-title":"Health Promot Int"},{"key":"2024011907300480800_ocad099-B8","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1016\/j.urology.2018.12.050","article-title":"Misinformation on the Internet regarding ablative therapies for prostate cancer","volume":"133","author":"Asafu-Adjei","year":"2019","journal-title":"Urology"},{"issue":"21","key":"2024011907300480800_ocad099-B9","doi-asserted-by":"crossref","first-page":"3757","DOI":"10.1002\/cncr.34447","article-title":"Improving access to oncology publications for advocates and people with cancer","volume":"128","author":"Tabernero","year":"2022","journal-title":"Cancer"},{"issue":"4","key":"2024011907300480800_ocad099-B10","doi-asserted-by":"crossref","first-page":"460","DOI":"10.1177\/2168479017696268","article-title":"Patient centricity and pharmaceutical companies: is it feasible?","volume":"51","author":"Du Plessis","year":"2017","journal-title":"Ther Innov Regul Sci"},{"issue":"3","key":"2024011907300480800_ocad099-B11","doi-asserted-by":"crossref","first-page":"488","DOI":"10.3390\/app9030488","article-title":"The correlation between users\u2019 cognitive characteristics and visualization literacy","volume":"9","author":"Lee","year":"2019","journal-title":"Appl Sci"},{"issue":"6","key":"2024011907300480800_ocad099-B12","doi-asserted-by":"crossref","first-page":"1857","DOI":"10.1073\/pnas.1807180116","article-title":"Data visualization literacy: definitions, conceptual frameworks, exercises, and assessments","volume":"116","author":"B\u00f6rner","year":"2019","journal-title":"Proc Natl Acad Sci U S A"},{"issue":"3","key":"2024011907300480800_ocad099-B13","doi-asserted-by":"crossref","first-page":"285","DOI":"10.1177\/14738716221081831","article-title":"Interactive visualization literacy: the state-of-the-art","volume":"21","author":"Firat","year":"2022","journal-title":"Inf Vis"},{"issue":"12","key":"2024011907300480800_ocad099-B14","doi-asserted-by":"crossref","first-page":"1963","DOI":"10.1109\/TVCG.2014.2346984","article-title":"A principled way of assessing visualization literacy","volume":"20","author":"Boy","year":"2014","journal-title":"IEEE Trans Vis Comput Graph"},{"issue":"1","key":"2024011907300480800_ocad099-B15","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1109\/TVCG.2016.2598920","article-title":"VLAT: development of a visualization literacy assessment test","volume":"23","author":"Lee","year":"2017","journal-title":"IEEE Trans Vis Comput Graph"},{"issue":"10","key":"2024011907300480800_ocad099-B16","doi-asserted-by":"crossref","first-page":"2457","DOI":"10.1007\/s11136-015-0974-y","article-title":"Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation","volume":"24","author":"Brundage","year":"2015","journal-title":"Qual Life Res"},{"issue":"4","key":"2024011907300480800_ocad099-B17","doi-asserted-by":"crossref","first-page":"483","DOI":"10.1016\/j.pec.2015.10.027","article-title":"Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: what makes a pro picture worth a thousand words?","volume":"99","author":"Bantug","year":"2016","journal-title":"Patient Educ Couns"},{"issue":"10","key":"2024011907300480800_ocad099-B18","doi-asserted-by":"crossref","first-page":"4149","DOI":"10.1007\/s00520-016-3240-0","article-title":"Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice","volume":"24","author":"Smith","year":"2016","journal-title":"Support Care Cancer"},{"issue":"2","key":"2024011907300480800_ocad099-B19","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1007\/s11136-018-2020-3","article-title":"Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data","volume":"28","author":"Snyder","year":"2019","journal-title":"Qual Life Res"},{"issue":"1","key":"2024011907300480800_ocad099-B20","doi-asserted-by":"crossref","first-page":"238","DOI":"10.1186\/s12920-021-01056-0","article-title":"Design and user experience testing of a polygenic score report: a qualitative study of prospective users","volume":"14","author":"Brockman","year":"2021","journal-title":"BMC Med Genomics"},{"issue":"6","key":"2024011907300480800_ocad099-B21","doi-asserted-by":"crossref","first-page":"e0268789","DOI":"10.1371\/journal.pone.0268789","article-title":"Plain language summaries: a systematic review of theory, guidelines and empirical research","volume":"17","author":"Stoll","year":"2022","journal-title":"PLoS One"},{"key":"2024011907300480800_ocad099-B22","author":"Cancer Research UK","year":"2019"},{"key":"2024011907300480800_ocad099-B23","year":"2018"},{"key":"2024011907300480800_ocad099-B24","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1200\/EDBK_200383","article-title":"Implementation of patient-reported outcomes in routine medical care","volume":"38","author":"Basch","year":"2018","journal-title":"Am Soc Clin Oncol Educ Book"},{"issue":"4","key":"2024011907300480800_ocad099-B25","doi-asserted-by":"crossref","first-page":"148","DOI":"10.12788\/jcso.0246","article-title":"Repeated measures analysis of patient-reported outcomes in prostate cancer after abiraterone acetate","volume":"14","author":"Cella","year":"2016","journal-title":"J Community Support Oncol"},{"issue":"6","key":"2024011907300480800_ocad099-B26","doi-asserted-by":"crossref","first-page":"920","DOI":"10.1016\/S0090-4295(97)00459-7","article-title":"Measuring quality of life in men with prostate cancer using the functional assessment of cancer therapy-prostate instrument","volume":"50","author":"Esper","year":"1997","journal-title":"Urology"},{"key":"2024011907300480800_ocad099-B27"},{"issue":"1","key":"2024011907300480800_ocad099-B28","doi-asserted-by":"crossref","first-page":"124","DOI":"10.1111\/j.1524-4733.2008.00409.x","article-title":"Estimating clinically meaningful changes for the Functional Assessment of Cancer Therapy \u2013 Prostate: results from a clinical trial of patients with metastatic hormone-refractory prostate cancer","volume":"12","author":"Cella","year":"2009","journal-title":"Value Health"},{"issue":"6","key":"2024011907300480800_ocad099-B29","doi-asserted-by":"crossref","first-page":"1248","DOI":"10.1111\/hex.12564","article-title":"Patient and physician views of shared decision making in cancer","volume":"20","author":"Tamirisa","year":"2017","journal-title":"Health Expect"},{"issue":"2","key":"2024011907300480800_ocad099-B30","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1197\/jamia.M1687","article-title":"Promoting health literacy","volume":"12","author":"McCray","year":"2005","journal-title":"J Am Med Inform Assoc"},{"issue":"1","key":"2024011907300480800_ocad099-B31","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1080\/07359683.2022.2094101","article-title":"Medical decision-making with tables and graphs: the role of cognition, emotions, and analytic thinking","volume":"40","author":"Benoit","year":"2023","journal-title":"Health Mark Q"},{"key":"2024011907300480800_ocad099-B32","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1186\/s40900-020-00227-0","article-title":"Researchers, patients, and other stakeholders\u2019 perspectives on challenges to and strategies for engagement","volume":"6","author":"Heckert","year":"2020","journal-title":"Res Involv Engagem"},{"issue":"Suppl 1","key":"2024011907300480800_ocad099-B33","doi-asserted-by":"crossref","first-page":"S1","DOI":"10.1097\/MLR.0000000000001089","article-title":"A PRO-cision medicine methods toolkit to address the challenges of personalizing cancer care using patient-reported outcomes: introduction to the supplement","volume":"57","author":"Snyder","year":"2019","journal-title":"Med Care"},{"issue":"10","key":"2024011907300480800_ocad099-B34","doi-asserted-by":"crossref","first-page":"1848","DOI":"10.1002\/cncr.30530","article-title":"What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability","volume":"123","author":"Snyder","year":"2017","journal-title":"Cancer"},{"issue":"3","key":"2024011907300480800_ocad099-B35","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1177\/15291006211057899","article-title":"The practice of visual data communication: what works","volume":"22","author":"Schwabish","year":"2021","journal-title":"Psychol Sci Public Interest"},{"issue":"1","key":"2024011907300480800_ocad099-B36","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1007\/s11136-017-1710-6","article-title":"Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder","volume":"27","author":"Brundage","year":"2018","journal-title":"Qual Life Res"},{"key":"2024011907300480800_ocad099-B37","author":"Bevans","year":"2022"},{"issue":"5","key":"2024011907300480800_ocad099-B38","first-page":"407","article-title":"Health information on the Internet: gold mine or minefield?","volume":"60","author":"Tonsaker","year":"2014","journal-title":"Can Fam Physician"},{"issue":"2","key":"2024011907300480800_ocad099-B39","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1177\/2374373519837256","article-title":"How oncologists perceive the availability and quality of information generated from patient-reported outcomes (PROs)","volume":"7","author":"Shea","year":"2020","journal-title":"J Patient Exp"},{"issue":"1","key":"2024011907300480800_ocad099-B40","first-page":"29","article-title":"Patient-centered communication: basic skills","volume":"95","author":"Hashim","year":"2017","journal-title":"Am Fam Physician"},{"issue":"19","key":"2024011907300480800_ocad099-B41","doi-asserted-by":"crossref","first-page":"2150","DOI":"10.1200\/JCO.21.00195","article-title":"Understanding treatment tolerability in older adults with cancer","volume":"39","author":"Flannery","year":"2021","journal-title":"J Clin Oncol"},{"issue":"2","key":"2024011907300480800_ocad099-B42","doi-asserted-by":"crossref","first-page":"415","DOI":"10.1007\/s13555-021-00500-4","article-title":"Tolerability of and adherence to topical treatments in atopic dermatitis: a narrative review","volume":"11","author":"Tier","year":"2021","journal-title":"Dermatol Ther (Heidelb)"},{"issue":"2","key":"2024011907300480800_ocad099-B43","doi-asserted-by":"crossref","first-page":"189","DOI":"10.1590\/1516-4446-2020-0935","article-title":"How can we improve antidepressant adherence in the management of depression? A targeted review and 10 clinical recommendations","volume":"43","author":"Solmi","year":"2021","journal-title":"Braz J Psychiatry"},{"issue":"2","key":"2024011907300480800_ocad099-B44","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1111\/bcp.15016","article-title":"Drug tolerability: how much ambiguity can be tolerated? A systematic review of the assessment of tolerability in clinical studies","volume":"88","author":"Stanulovi\u0107","year":"2022","journal-title":"Br J Clin Pharmacol"},{"key":"2024011907300480800_ocad099-B45","author":"Kwon","year":"2016"},{"key":"2024011907300480800_ocad099-B46","doi-asserted-by":"publisher","author":"Peng","DOI":"10.2312\/eged.20221042"},{"issue":"4","key":"2024011907300480800_ocad099-B47","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1007\/s10912-004-4833-z","article-title":"Foucault on the case: The Pastoral and Juridical Foundation of Medical Power","volume":"25","author":"Tierney","year":"2004","journal-title":"J Med Humanit"},{"key":"2024011907300480800_ocad099-B48","volume-title":"The Birth of the Clinic: An Archaeology of Medical Perception","author":"Foucault","year":"1975"}],"container-title":["Journal of the American Medical Informatics Association"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/31\/2\/363\/56209497\/ocad099.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jamia\/article-pdf\/31\/2\/363\/56209497\/ocad099.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,1,19]],"date-time":"2024-01-19T07:32:30Z","timestamp":1705649550000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jamia\/article\/31\/2\/363\/7204564"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6,21]]},"references-count":48,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2023,6,21]]},"published-print":{"date-parts":[[2024,1,18]]}},"URL":"https:\/\/doi.org\/10.1093\/jamia\/ocad099","relation":{},"ISSN":["1067-5027","1527-974X"],"issn-type":[{"value":"1067-5027","type":"print"},{"value":"1527-974X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2024,2,1]]},"published":{"date-parts":[[2023,6,21]]}}}