{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T15:56:16Z","timestamp":1753890976761,"version":"3.41.2"},"reference-count":19,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2025,5,15]],"date-time":"2025-05-15T00:00:00Z","timestamp":1747267200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Digit. Health"],"abstract":"Introduction<\/jats:title>This study describes the process and outcomes of a Patient and Public Involvement and Engagement (PPIE) event designed to incorporate patient perspectives into the application of Natural Language Processing (NLP) for analyzing unstructured free-text cancer medical notes. The analysis of routinely collected data aims to provide evidence to support clinical decision making in patient groups that are often under-represented in conventional clinical trials, highlighting the critical role of PPIE in responsibly implementing AI within healthcare. The study focuses on ensuring that NLP research reflects patient-centered and clinically relevant considerations.<\/jats:p><\/jats:sec>Methods<\/jats:title>The event involved 13 participants: nine cancer survivors and caregivers, acting as contributors, and four researchers. These participants engaged in focus group discussions on three key topics: data use, consent preferences, and communication strategies for this type of research.<\/jats:p><\/jats:sec>Results<\/jats:title>Some key findings included that two-thirds (6\/9) of contributors preferred a national opt-out consent model for data use, while one-third (3\/9) favored project-specific consent. They offered perspectives on data use, including how it is processed and stored. They also highlighted the importance of clear, accessible information about the research process to build trust and facilitate informed decision-making.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fdgth.2025.1560757","type":"journal-article","created":{"date-parts":[[2025,5,15]],"date-time":"2025-05-15T05:29:10Z","timestamp":1747286950000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Data, dialogue, and design: patient and public involvement and engagement for natural language processing with real-world cancer data"],"prefix":"10.3389","volume":"7","author":[{"given":"Wuraola","family":"Oyewusi","sequence":"first","affiliation":[]},{"given":"Eliana M.","family":"Vasquez Osorio","sequence":"additional","affiliation":[]},{"given":"Goran","family":"Nenadic","sequence":"additional","affiliation":[]},{"given":"Issy","family":"MacGregor","sequence":"additional","affiliation":[]},{"given":"Gareth","family":"Price","sequence":"additional","affiliation":[]}],"member":"1965","published-online":{"date-parts":[[2025,5,15]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"vii54","DOI":"10.1093\/rheumatology\/key109","article-title":"Randomized controlled trials and real-world data: differences and similarities to untangle literature data","volume":"57","author":"Monti","year":"2018","journal-title":"Rheumatology"},{"key":"B2","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.02218-2018","article-title":"Letting the right one in: evaluating the generalisability of clinical trials","volume":"52","author":"Shrimanker","year":"2018","journal-title":"Eur Respir J"},{"key":"B3","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1002\/cpt.1426","article-title":"Real-world data for regulatory decision making: challenges and possible solutions for Europe","volume":"106","author":"Cave","year":"2019","journal-title":"Clin Pharmacol Ther"},{"key":"B4","unstructured":"U.S. Department of Health and Human Services\n 2022 Report to Congress: Health Information Technology for Economic and Clinical Health (HITECH) Act\n \n 2022"},{"key":"B5","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1007\/s12553-020-00517-3","article-title":"Consultation analysis: use of free text versus coded text","volume":"11","author":"Millares Martin","year":"2021","journal-title":"Health Technol (Berl)"},{"key":"B6","doi-asserted-by":"publisher","first-page":"e27210","DOI":"10.2196\/27210","article-title":"A question-and-answer system to extract data from free-text oncological pathology reports (CancerBERT network): development study","volume":"24","author":"Mitchell","year":"2022","journal-title":"J Med Internet Res"},{"key":"B7","doi-asserted-by":"publisher","first-page":"66","DOI":"10.3389\/fmed.2019.00066","article-title":"The revival of the notes field: leveraging the unstructured content in electronic health records","volume":"6","author":"Assale","year":"2019","journal-title":"Front Med (Lausanne)"},{"volume-title":"What is Natural Language Processing?","year":"","key":"B8"},{"year":"","key":"B9","article-title":"ReACH: Patient and Public Involvement and Engagement (PPIE)"},{"volume-title":"Briefing Notes for Researchers\u2014public Involvement in NHS, Health and Social Care Research","year":"","key":"B10"},{"key":"B11","doi-asserted-by":"publisher","first-page":"100506","DOI":"10.1016\/j.patter.2022.100506","article-title":"Patient and public involvement to build trust in artificial intelligence: a framework, tools, and case studies","volume":"3","author":"Banerjee","year":"2022","journal-title":"Patterns (N Y)"},{"key":"B12","doi-asserted-by":"publisher","first-page":"e49303","DOI":"10.2196\/49303","article-title":"Centering public perceptions on translating AI into clinical practice: patient and public involvement and engagement consultation focus group study","volume":"25","author":"Lammons","year":"2023","journal-title":"J Med Internet Res"},{"key":"B13","doi-asserted-by":"publisher","first-page":"367","DOI":"10.1136\/medethics-2019-105472","article-title":"Should free-text data in electronic medical records be shared for research? A citizens\u2019 jury study in the UK","volume":"46","author":"Ford","year":"2020","journal-title":"J Med Ethics"},{"volume-title":"Understanding the National Data Opt-Out","year":"","key":"B14"},{"key":"B15","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual Res Psychol"},{"key":"B16","doi-asserted-by":"publisher","first-page":"87","DOI":"10.1111\/hex.13152","article-title":"A patient and public involvement workshop using visual art and priority setting to provide patients with a voice to describe quality and safety concerns: vitamin B12 deficiency and pernicious anaemia","volume":"24","author":"Tyler","year":"2021","journal-title":"Health Expect"},{"key":"B17","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1186\/s40900-023-00416-7","article-title":"To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic","volume":"9","author":"McGrane","year":"2023","journal-title":"Res Involv Engagem"},{"key":"B18","doi-asserted-by":"publisher","first-page":"1322","DOI":"10.1111\/hex.12978","article-title":"Getting underneath the skin: a community engagement event for optimal vitamin D status in an \u201ceasily overlooked\u201d group","volume":"22","author":"Lee","year":"2019","journal-title":"Health Expect"},{"key":"B19","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1007\/s11136-023-03513-y","article-title":"Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey","volume":"33","author":"Owen","year":"2024","journal-title":"Qual Life Res"}],"container-title":["Frontiers in Digital Health"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fdgth.2025.1560757\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,15]],"date-time":"2025-05-15T05:29:15Z","timestamp":1747286955000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fdgth.2025.1560757\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5,15]]},"references-count":19,"alternative-id":["10.3389\/fdgth.2025.1560757"],"URL":"https:\/\/doi.org\/10.3389\/fdgth.2025.1560757","relation":{},"ISSN":["2673-253X"],"issn-type":[{"type":"electronic","value":"2673-253X"}],"subject":[],"published":{"date-parts":[[2025,5,15]]},"article-number":"1560757"}}