Background: Patient-controlled granular information sharing (PC-GIS) allows a patient to select specific health information “granules,” such as diagnoses and medications; choose with whom the information is shared; and decide how the information can be used. Previous studies suggest that health professionals have mixed or concerned opinions about the process and impact of PC-GIS for care and research. Further understanding of behavioral health professionals’ views on PC-GIS are needed for successful implementation and use of this technology. Objective: The aim of this study was to evaluate changes in health professionals’ opinions on PC-GIS before and after a demonstrative case study. Methods: Four focus groups were conducted at two integrated health care facilities: one serious mental illness facility and one general behavioral health facility. A total of 28 participants were given access to outcomes of a previous study where patients had control over medical record sharing. Participants were surveyed before and after focus groups on their views about PC-GIS. Thematic analysis of focus group output was paired with descriptive statistics and exploratory factor analysis of surveys. Results: Behavioral health professionals showed a significant opinion shift toward concern after the focus group intervention, specifically on the topics of patient understanding (P=.001), authorized electronic health record access (P=.03), patient-professional relationship (P=.006), patient control acceptance (P<.001), and patient rights (P=.02). Qualitative methodology supported these results. The themes of professional considerations (2234/4025, 55.5% of codes) and necessity of health information (260/766, 33.9%) identified key aspects of PC-GIS concerns. Conclusions: Behavioral health professionals agreed that a trusting patient-professional relationship is integral to the optimal implementation of PC-GIS, but were concerned about the potential negative impacts of PC-GIS on patient safety and quality of care.

中文翻译：

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行为健康专业人员对患者控制的细粒度信息共享的看法（第 1 部分）：焦点小组研究


背景：患者控制的颗粒信息共享（PC-GIS）允许患者选择特定的健康信息“颗粒”，例如诊断和药物治疗；选择与谁共享信息；并决定如何使用这些信息。先前的研究表明，卫生专业人员对 PC-GIS 对护理和研究的过程和影响有不同或担忧的看法。为了成功实施和使用该技术，需要进一步了解行为健康专业人员对 PC-GIS 的看法。目的：本研究的目的是评估示范性案例研究前后卫生专业人员对 PC-GIS 看法的变化。方法：在两个综合医疗机构中进行了四个焦点小组：一个是严重精神疾病机构，一个是普通行为健康机构。共有 28 名参与者获得了之前一项研究的结果，其中患者可以控制医疗记录共享。在焦点小组讨论之前和之后对参与者进行了调查，了解他们对 PC-GIS 的看法。焦点小组产出的主题分析与调查的描述性统计和探索性因素分析相结合。结果：在焦点小组干预后，行为健康专业人员的观点显着转向关注，特别是在患者理解 ( P = .001)、授权电子健康记录访问 ( P = .03)、患者与专业关系 ( P =.006)、患者控制接受度 ( P <.001) 和患者权利 ( P =.02)。定性方法支持了这些结果。 专业考虑（2234/4025，代码的 55.5%）和健康信息的必要性（260/766，33.9%）的主题确定了 PC-GIS 关注的关键方面。结论：行为健康专业人员一致认为，信任的患者与专业人士关系对于 PC-GIS 的最佳实施至关重要，但他们担心 PC-GIS 对患者安全和护理质量的潜在负面影响。