Meaningful patient and public involvement in digital health innovation, implementation and evaluation: A systematic review.
Meaningful patient and public involvement in digital health innovation, implementation and evaluation: A systematic review.
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DOI：
10.1111/hex.13506
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发表时间：
2022-08
影响因子：
3.2
通讯作者：
Chatterjee, Arunangsu
中科院分区：
文献类型：
--
作者：
Baines, Rebecca;Bradwell, Hannah;Edwards, Katie;Stevens, Sebastian;Prime, Samantha;Tredinnick-Rowe, John;Sibley, Miles;Chatterjee, Arunangsu
让患者和公众有意义地参与数字医疗创新的重要性已得到广泛认可，但人们往往对此知之甚少。因此，本综述旨在探讨患者和公众如何参与数字医疗创新，并确定支持和抑制患者和公众有意义地参与数字医疗创新、实施和评估的因素。 2010 年至 2020 年 7 月在电子数据库 MEDLINE、EMBASE、PsycINFO、CINAHL、Scopus 和 ACM Digital Library 中进行了检索。还使用患者体验图书馆数据库和谷歌学术进行灰色文献检索。在已识别的 10,540 篇文章中，纳入了 433 篇。大部分纳入的文章发表于美国、英国、加拿大和澳大利亚，来自 42 个国家的代表强调了 PPI 在数字健康领域的国际相关性。确定了据报道已开展 PPI 的 112 个主题领域。最常描述的领域包括癌症 (n = 50)、心理健康 (n = 43)、糖尿病 (n = 26) 和长期疾病 (n = 19)。有趣的是，超过 133 个术语被用来描述 PPI；很少有明确定义。患者通常最常参与创新之旅的最后、被动阶段，例如可用性测试，其中主动影响变革的能力受到严重限制。实现有意义的 PPI 的常见障碍包括数据隐私和安全问题、没有尽早让患者参与以及缺乏信任。建议的促成因素通常旨在应对此类挑战。 PPI 在很大程度上被认为在数字健康创新中有价值且必不可少，但很少得到实践。创新者和患者都存在一些障碍，目前限制了 PPI 在数字医疗创新中的质量、频率和持续时间，尽管在过去十年中已经取得了进步。一些报告的障碍和推动因素（例如数据隐私和安全的重要性）似乎是 PPI 在数字创新中所独有的。鉴于数字健康创新所报道的好处和影响，应该做出更大的努力来支持创新者和患者从一开始就有意义地参与数字健康创新。利益相关者对支持数字健康创新中有意义的 PPI 的原则达成共识，将有助于为如何实现这一目标提供基于证据的指导。该综述收到了患者和公众的广泛贡献，患者体验图书馆的代表参与了整个综述的构思，从设计（包括对搜索策略的建议修订）到文章的制作和传播。患者和公众贡献者参与的其他领域包括促进归纳主题分析过程、完善主题框架和最终确定主题措辞，帮助确保从患者角度来看的相关性、价值和意义。此次审查的结果还通过一系列焦点小组和网络研讨会提交给了包括患者、患者倡导者和临床医生在内的各种利益相关者。鉴于患者体验图书馆的广泛参与，他们理所当然地被列为本综述的作者。
The importance of meaningfully involving patients and the public in digital health innovation is widely acknowledged, but often poorly understood. This review, therefore, sought to explore how patients and the public are involved in digital health innovation and to identify factors that support and inhibit meaningful patient and public involvement (PPI) in digital health innovation, implementation and evaluation. Searches were undertaken from 2010 to July 2020 in the electronic databases MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and ACM Digital Library. Grey literature searches were also undertaken using the Patient Experience Library database and Google Scholar. Of the 10,540 articles identified, 433 were included. The majority of included articles were published in the United States, United Kingdom, Canada and Australia, with representation from 42 countries highlighting the international relevance of PPI in digital health. 112 topic areas where PPI had reportedly taken place were identified. Areas most often described included cancer (n = 50), mental health (n = 43), diabetes (n = 26) and long‐term conditions (n = 19). Interestingly, over 133 terms were used to describe PPI; few were explicitly defined. Patients were often most involved in the final, passive stages of an innovation journey, for example, usability testing, where the ability to proactively influence change was severely limited. Common barriers to achieving meaningful PPI included data privacy and security concerns, not involving patients early enough and lack of trust. Suggested enablers were often designed to counteract such challenges. PPI is largely viewed as valuable and essential in digital health innovation, but rarely practised. Several barriers exist for both innovators and patients, which currently limits the quality, frequency and duration of PPI in digital health innovation, although improvements have been made in the past decade. Some reported barriers and enablers such as the importance of data privacy and security appear to be unique to PPI in digital innovation. Greater efforts should be made to support innovators and patients to become meaningfully involved in digital health innovations from the outset, given its reported benefits and impacts. Stakeholder consensus on the principles that underpin meaningful PPI in digital health innovation would be helpful in providing evidence‐based guidance on how to achieve this. This review has received extensive patient and public contributions with a representative from the Patient Experience Library involved throughout the review's conception, from design (including suggested revisions to the search strategy) through to article production and dissemination. Other areas of patient and public contributor involvement include contributing to the inductive thematic analysis process, refining the thematic framework and finalizing theme wording, helping to ensure relevance, value and meaning from a patient perspective. Findings from this review have also been presented to a variety of stakeholders including patients, patient advocates and clinicians through a series of focus groups and webinars. Given their extensive involvement, the representative from the Patient Experience Library is rightly included as an author of this review.
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影响因子：
--
作者：
Bird M;McGillion M;Chambers EM;Dix J;Fajardo CJ;Gilmour M;Levesque K;Lim A;Mierdel S;Ouellette C;Polanski AN;Reaume SV;Whitmore C;Carter N
通讯作者：
Carter N
影响因子：
6.3
作者：
Baum, Fran;MacDougall, Colin;Smith, Danielle
通讯作者：
Smith, Danielle
DOI：
10.1016/j.ijmedinf.2019.02.007
发表时间：
2019-05-01
影响因子：
4.9
作者：
Calvillo-Arbizu, Jorge;Roa-Romero, Laura M.;Roman-Martinez, Isabel
通讯作者：
Roman-Martinez, Isabel
影响因子：
5.4
作者：
Berg, Marie;Adolfsson, Annsofie;Sparud-Lundin, Carina
通讯作者：
Sparud-Lundin, Carina
影响因子：
--
作者：
Baek, Hyunyoung;Suh, Jung-Won;Yoo, Sooyoung
通讯作者：
Yoo, Sooyoung