背景：电子健康记录（EHR）在国际上越来越多地实施，而与服务用户(SU)的EHR数字共享是一种相对较新的做法。对患者可访问的EHRs（PAEHRs）的研究-通常被称为开放笔记-在一般医学环境中揭示了有希望的结果。然而,在精神卫生保健（MHC）环境中进行的研究强调了一些需要进一步探索的道德和实践挑战。
目的：本范围审查旨在绘制MHC中PAEHR的现有证据。我们寻求将研究结果与其他健康背景的研究联系起来，为了比较不同的利益相关者的观点，期望,与PAEHR的实际经验，并确定潜在的研究差距。
方法：使用6个电子数据库进行系统范围审查。包括了截至2021年9月与受精神健康状况影响的人进行临床笔记或EHR数字共享的研究。使用混合方法评估工具来评估研究的质量。PRISMA（系统审查和荟萃分析的首选报告项目）扩展范围审查指导了叙事综合和调查结果报告。
结果：在筛选的1034篇论文中，这次审查包括31名。这些研究主要使用定性方法或调查，主要在2018年之后在美国发表。在门诊(n=29)和住院(n=11)检查PAEHR，三分之一的研究是在退伍军人事务心理健康方面进行的。叙事综合允许根据不同的利益相关者整合发现。首先,SUs主要报告了与PAEHR的积极经验，比如增加对他们临床医生的信任，健康素养,和赋权。负面经验与不准确的笔记有关，不尊重的语言使用，或发现未讨论的诊断。第二,对于医疗保健专业人员来说，担忧大于分享EHR的好处，包括由于更多的文档工作而增加的临床负担以及阅读笔记可能引发的伤害。第三，护理伙伴更好地了解他们的家庭成员的精神问题，并能够更好地支持他们，当他们获得他们的EHR。最后,政策利益相关者和专家解决了道德挑战，并建议制定指南和培训，以更好地为临床医生和SU编写和阅读笔记做好准备。
结论：MHC中的PAEHR可能会增强用户的参与，患者的自主性，并将医疗转移到共同生产的过程中。卫生保健专业人员的接受问题与一般卫生环境的发现一致。然而,与受精神健康状况影响的人数字共享EHR的证据是有限的.最重要的是,需要进一步的研究来检查临床有效性，效率,和实施这种社会技术干预。
BACKGROUND: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.
OBJECTIVE: This scoping
review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders\' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.
METHODS: A systematic scoping
review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.
RESULTS: Of the 1034 papers screened, 31 were included in this
review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members\' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.
CONCLUSIONS: PAEHRs in MHC may strengthen user involvement, patients\' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.
