Ford Elizabeth, Curlewis Keegan, Squires Emma, Griffiths Lucy J, Stewart Robert, Jones Kerina H
Department of Primary Care and Public Health, Brighton and Sussex Medical School, Brighton, United Kingdom.
Swansea Medical School, University of Swansea, Swansea, United Kingdom.
Front Digit Health. 2021 Feb 10;3:606599. doi: 10.3389/fdgth.2021.606599. eCollection 2021.
The analysis of clinical free text from patient records for research has potential to contribute to the medical evidence base but access to clinical free text is frequently denied by data custodians who perceive that the privacy risks of data-sharing are too high. Engagement activities with patients and regulators, where views on the sharing of clinical free text data for research have been discussed, have identified that stakeholders would like to understand the potential clinical benefits that could be achieved if access to free text for clinical research were improved. We aimed to systematically review all UK research studies which used clinical free text and report direct or potential benefits to patients, synthesizing possible benefits into an easy to communicate taxonomy for public engagement and policy discussions. We conducted a systematic search for articles which reported primary research using clinical free text, drawn from UK health record databases, which reported a benefit or potential benefit for patients, actionable in a clinical environment or health service, and not solely methods development or data quality improvement. We screened eligible papers and thematically analyzed information about clinical benefits reported in the paper to create a taxonomy of benefits. We identified 43 papers and derived five themes of benefits: health-care quality or services improvement, observational risk factor-outcome research, drug prescribing safety, case-finding for clinical trials, and development of clinical decision support. Five papers compared study quality with and without free text and found an improvement of accuracy when free text was included in analytical models. Findings will help stakeholders weigh the potential benefits of free text research against perceived risks to patient privacy. The taxonomy can be used to aid public and policy discussions, and identified studies could form a public-facing repository which will help the health-care text analysis research community better communicate the impact of their work.
对患者记录中的临床自由文本进行分析以用于研究，有可能为医学证据库做出贡献，但数据保管者常常拒绝提供临床自由文本，因为他们认为数据共享的隐私风险过高。与患者和监管机构开展的参与活动中，讨论了关于共享临床自由文本数据用于研究的观点，结果发现利益相关者希望了解，如果改善获取临床研究自由文本的途径，可能实现的潜在临床益处。我们旨在系统回顾所有使用临床自由文本的英国研究，并报告对患者的直接或潜在益处，将可能的益处综合成一个便于交流的分类法，用于公众参与和政策讨论。我们系统检索了报道使用临床自由文本进行初步研究的文章，这些文章来自英国健康记录数据库，报道了对患者的益处或潜在益处，在临床环境或医疗服务中可行，且不仅仅是方法开发或数据质量改进。我们筛选了符合条件的论文，并对论文中报道的临床益处信息进行主题分析，以创建益处分类法。我们确定了43篇论文，并得出了五个益处主题：医疗质量或服务改善、观察性风险因素-结果研究、药物处方安全、临床试验病例发现以及临床决策支持的开发。五篇论文比较了有无自由文本时的研究质量，发现分析模型中纳入自由文本时准确性有所提高。研究结果将帮助利益相关者权衡自由文本研究的潜在益处与对患者隐私的感知风险。该分类法可用于辅助公众和政策讨论，所确定的研究可形成一个面向公众的知识库，这将有助于医疗文本分析研究界更好地传达其工作的影响。
