Ivanova Julia, Tang Tianyu, Idouraine Nassim, Murcko Anita, Whitfield Mary Jo, Dye Christy, Chern Darwyn, Grando Adela
School of Human Evolution and Social Change, Arizona State University, Tempe, AZ, United States.
College of Medicine, University of Arizona, Tucson, AZ, United States.
JMIR Ment Health. 2022 Apr 20;9(4):e21208. doi: 10.2196/21208.
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.
The aim of this study was to evaluate changes in health professionals' opinions on PC-GIS before and after a demonstrative case study.
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.
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.
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.
患者控制的颗粒状信息共享（PC-GIS）允许患者选择特定的健康信息“颗粒”，如诊断和药物治疗；选择与谁共享信息；并决定信息的使用方式。先前的研究表明，卫生专业人员对PC-GIS用于护理和研究的过程及影响看法不一或有所担忧。为了成功实施和使用这项技术，需要进一步了解行为健康专业人员对PC-GIS的看法。
本研究的目的是评估在一个示范性案例研究前后，卫生专业人员对PC-GIS的看法变化。
在两个综合医疗保健机构进行了四个焦点小组讨论：一个严重精神疾病机构和一个一般行为健康机构。共有28名参与者能够获取先前一项研究的结果，该研究中患者可控制病历共享。在焦点小组讨论前后，对参与者关于PC-GIS的看法进行了调查。对焦点小组讨论结果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。
在焦点小组干预后，行为健康专业人员的看法发生了显著转变，转向担忧，特别是在患者理解（P = 0.001）、授权电子健康记录访问（P = 0.03）、患者-专业人员关系（P = 0.006）、患者控制接受度（P < 0.001）和患者权利（P = 0.02）等主题上。定性方法支持了这些结果。专业考量主题（2234/4025，占编码的55.5%）和健康信息必要性主题（260/766，占33.9%）确定了PC-GIS担忧的关键方面。
行为健康专业人员一致认为，信任的患者-专业人员关系是PC-GIS最佳实施的不可或缺因素，但担心PC-GIS对患者安全和护理质量的潜在负面影响。
