Mobilizing participation: The first German stakeholder conference on engaging patients and self-help organizations in digital health research.

IF 3.9 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

DIGITAL HEALTH Pub Date : 2026-08-19 eCollection Date: 2026-01-01 DOI:10.1177/20552076261467869

Paula Nadler, Manuel Schaper, Thomas M Duda, Hartmut Gartzke, Wiebke Papenthin, Verena Winter, Silke Schicktanz, Sabine Wöhlke

{"title":"Mobilizing participation: The first German stakeholder conference on engaging patients and self-help organizations in digital health research.","authors":"Paula Nadler, Manuel Schaper, Thomas M Duda, Hartmut Gartzke, Wiebke Papenthin, Verena Winter, Silke Schicktanz, Sabine Wöhlke","doi":"10.1177/20552076261467869","DOIUrl":null,"url":null,"abstract":"Background: Digital transformation in the healthcare sector within the European Union (EU) raises various ethical concerns regarding the use of health research data and regarding how to address such concerns through ethical governance.Methods: This article presents the results of the first German national stakeholder conference - a structured discourse process for developing political or ethical positions through citizen participation - which included patient organizations (POs) and self-help organizations (SHOs) (N=45). Participants were asked to describe their positions regarding participation and engagement in digital health research and health research data-sharing policies in an interactive process, facilitated by researchers from health care ethics.Results: POs/SHOs emphasize the ethical relevance of patient autonomy and transparency as preconditions for trust. Therefore, data protection and transparent consent procedures are seen as a necessary part of responsible research. While recognizing the potential of large-scale data use to increase research efficiency, they stress the importance of promoting patient-centeredness through participatory approaches. Structured participation requires clear definition of tasks, empowerment of POs/SHOs, understanding of the special features of voluntary structures, and target group-oriented, barrier-free communication of research results. Their support depends on upholding strong legal safeguards and respecting individual rights. Additional demands include improved digital literacy, health literacy, and financial resources.Conclusions: Future research should focus on dynamic consent models and fair participation structures. From the start, it should be clarified to POs/SHOs whether intended research projects are oriented toward the public good or primarily commercial. This can be an important factor in their decision to participate in research.","PeriodicalId":51333,"journal":{"name":"DIGITAL HEALTH","volume":"12 ","pages":"20552076261467869"},"PeriodicalIF":3.9000,"publicationDate":"2026-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13490783/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"DIGITAL HEALTH","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/20552076261467869","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2026/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}

引用次数: 0

Abstract

Background: Digital transformation in the healthcare sector within the European Union (EU) raises various ethical concerns regarding the use of health research data and regarding how to address such concerns through ethical governance.

Methods: This article presents the results of the first German national stakeholder conference - a structured discourse process for developing political or ethical positions through citizen participation - which included patient organizations (POs) and self-help organizations (SHOs) (N=45). Participants were asked to describe their positions regarding participation and engagement in digital health research and health research data-sharing policies in an interactive process, facilitated by researchers from health care ethics.

Results: POs/SHOs emphasize the ethical relevance of patient autonomy and transparency as preconditions for trust. Therefore, data protection and transparent consent procedures are seen as a necessary part of responsible research. While recognizing the potential of large-scale data use to increase research efficiency, they stress the importance of promoting patient-centeredness through participatory approaches. Structured participation requires clear definition of tasks, empowerment of POs/SHOs, understanding of the special features of voluntary structures, and target group-oriented, barrier-free communication of research results. Their support depends on upholding strong legal safeguards and respecting individual rights. Additional demands include improved digital literacy, health literacy, and financial resources.

Conclusions: Future research should focus on dynamic consent models and fair participation structures. From the start, it should be clarified to POs/SHOs whether intended research projects are oriented toward the public good or primarily commercial. This can be an important factor in their decision to participate in research.

查看原文本刊更多论文

动员参与：关于让患者和自助组织参与数字健康研究的第一次德国利益相关者会议。

背景：欧盟（EU）内医疗保健部门的数字化转型引发了关于卫生研究数据使用以及如何通过伦理治理解决这些问题的各种伦理问题。方法：本文介绍了第一次德国国家利益相关者会议的结果-通过公民参与发展政治或道德立场的结构化话语过程-包括患者组织（POs）和自助组织（SHOs）（N=45）。与会者被要求在卫生保健伦理研究人员的推动下，描述他们在参与和参与数字卫生研究和卫生研究数据共享政策方面的立场。结果：POs/SHOs强调患者自主权和透明度作为信任的先决条件的伦理相关性。因此，数据保护和透明的同意程序被视为负责任研究的必要组成部分。在认识到大规模数据使用在提高研究效率方面的潜力的同时，他们强调了通过参与式方法促进以患者为中心的重要性。结构化参与需要明确任务定义，授权POs/SHOs，了解自愿结构的特点，面向目标群体，无障碍地交流研究成果。他们的支持取决于维护强有力的法律保障和尊重个人权利。其他需求包括提高数字素养、卫生素养和财政资源。结论：未来的研究应关注动态同意模型和公平参与结构。从一开始，就应该向POs/SHOs澄清拟进行的研究项目是面向公益还是主要面向商业。这可能是他们决定参与研究的一个重要因素。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊