Section of Hygiene, University Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, Roma, Italy.
Section of Hygiene, University Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, Roma, Italy
BMJ Open. 2021 Jul 9;11(7):e045846. doi: 10.1136/bmjopen-2020-045846.
Precision health requires citizens that are empowered to orient health decisions towards their personal values, aware of the benefits and risks, and committed to sharing their personal data to trustful institutions. Effective citizen engagement initiatives are fundamental for the success of a precision health approach.
To provide an overview of citizen engagement initiatives in precision health in European Union (EU) member states.
Scoping review.
The electronic databases PubMed, Web of Science, CINAHL and Embase were searched to include articles published in English. Furthermore, desk research was conducted in English, Dutch, French, Italian and Spanish. Articles or reports regarding ongoing initiatives of citizen engagement in precision health conducted in EU member states and published from January 2015 to July 2020 were considered eligible. A quality assessment of the retrieved entries using Critical Appraisal Skills Programme tool was conducted.
We identified nine documents, which reported eight ongoing citizen engagement initiatives, with substantial variability. Government agencies, non-governmental organisations and scientific societies were the main organisers and funders. Most of the initiatives were conducted in the UK. Genomics was the most emphasised aspect of precision health in these initiatives. Among the identified initiatives, both in-person and digital means were reported.
Our work provides an overview of current citizen engagement initiatives in the EU that can be useful for stakeholders interested in designing and developing precision health projects enriched by meaningful citizen participation.
CRD42020193866.
精准健康需要赋予公民权力，使他们能够根据个人价值观做出健康决策，了解其益处和风险，并承诺将个人数据分享给值得信赖的机构。有效的公民参与举措是成功实施精准健康方法的基础。
概述欧盟成员国在精准健康领域的公民参与举措。
范围综述。
检索 PubMed、Web of Science、CINAHL 和 Embase 电子数据库，以纳入 2015 年 1 月至 2020 年 7 月期间以英文发表的文章。此外，还进行了英文、荷兰文、法文、意大利文和西班牙文的桌面研究。选择符合条件的文章或报告，即关于在欧盟成员国开展的、以英文发表的、正在进行的精准健康公民参与倡议的文章或报告。使用批判性评估技巧项目工具对检索到的条目进行了质量评估。
我们确定了 9 份文件，其中报告了 8 项正在进行的公民参与举措，这些举措存在很大差异。政府机构、非政府组织和科学协会是主要的组织者和资助者。大多数举措都是在英国开展的。在这些举措中，基因组学是精准健康的重点。在所确定的举措中，都报告了亲身参与和数字参与。
我们的工作概述了欧盟目前的公民参与举措，对于有兴趣设计和开发具有有意义的公民参与的精准健康项目的利益相关者来说可能是有用的。
PROSPERO 注册号：CRD42020193866。
