Fraunhofer Center for International Management and Knowledge Economy IMW, Leipzig, Germany.
J Med Internet Res. 2023 Aug 30;25:e41635. doi: 10.2196/41635.
Digital health has the potential to improve the quality of care, reduce health care costs, and increase patient satisfaction. Patient acceptance and consent are a prerequisite for effective sharing of personal health information (PHI) through health information exchanges (HIEs). Patients need to form and retain trust in the system(s) they use to leverage the full potential of digital health. Germany is at the forefront of approving digital treatment options with cost coverage through statutory health insurance. However, the German population has a high level of technology skepticism and a low level of trust, providing a good basis to illuminate various facets of eHealth trust formation.
In a German setting, we aimed to answer the question, How does an individual form a behavioral intent to share PHI with an HIE platform? We discussed trust and informed consent through (1) synthesizing the main influence factor models into a complex model of trust in HIE, (2) providing initial validation of influence factors based on a qualitative study with patient interviews, and (3) developing a model of trust formation for digital health apps.
We developed a complex model of the formation of trust and the intent to share PHI. We provided initial validation of the influence factors through 20 qualitative, semistructured interviews in the German health care setting and used a deductive coding approach to analyze the data.
We found that German patients show a positive intent to share their PHI with HIEs under certain conditions. These include (perceived) information security and a noncommercial organization as the recipient of the PHI. Technology experience, age, policy and regulation, and a disposition to trust play an important role in an individual's privacy concern, which, combined with social influence, affects trust formation on a cognitive and emotional level. We found a high level of cognitive trust in health care and noncommercial research institutions but distrust in commercial entities. We further found that in-person interactions with physicians increase trust in digital health apps and PHI sharing. Patients' emotional trust depends on disposition and social influences. To form their intent to share, patients undergo a privacy calculus. Hereby, the individual's benefit (eg, convenience), benefits for the individual's own health, and the benefits for public welfare often outweigh the perceived risks of sharing PHI.
With the higher demand for timely PHI, HIE providers will need to clearly communicate the benefits of their solutions and their information security measures to health care providers (physicians, nursing and administrative staff) and patients and include them as key partners to increase trust. Offering easy access and educational measures as well as the option for specific consent may increase patients' trust and their intention to share PHI.
数字健康有望提高医疗质量、降低医疗成本和提高患者满意度。患者接受和同意是通过健康信息交换（HIE）有效共享个人健康信息（PHI）的前提。患者需要在使用系统时形成并保持信任，以充分发挥数字健康的潜力。德国在通过法定健康保险批准数字治疗方案并提供费用覆盖方面处于领先地位。然而，德国民众对技术持高度怀疑态度，信任度低，这为阐明电子健康信任形成的各个方面提供了很好的基础。
在德国环境下，我们旨在回答以下问题：个人如何形成与 HIE 平台共享 PHI 的行为意图？我们通过（1）将主要影响因素模型综合为 HIE 信任的复杂模型，（2）基于对患者访谈的定性研究初步验证影响因素，以及（3）为数字健康应用程序建立信任形成模型来讨论信任和知情同意。
我们开发了信任和共享 PHI 意图形成的复杂模型。我们通过在德国医疗保健环境下进行的 20 次定性、半结构化访谈初步验证了影响因素，并使用演绎编码方法对数据进行分析。
我们发现，在某些条件下，德国患者表示愿意将其 PHI 与 HIE 共享。这些条件包括（感知到的）信息安全和非商业组织作为 PHI 的接收者。技术经验、年龄、政策法规以及信任倾向在个人的隐私关注中起着重要作用，这与社会影响一起，在认知和情感层面影响信任的形成。我们发现，人们对医疗保健和非商业研究机构的信任度很高，但对商业实体的信任度较低。我们进一步发现，与医生的面对面互动会增加对数字健康应用程序和 PHI 共享的信任。患者的情感信任取决于倾向和社会影响。为了形成共享意图，患者会进行隐私计算。在此过程中，个人的利益（例如方便）、对个人健康的利益以及公共福利的利益往往超过共享 PHI 的感知风险。
随着对及时 PHI 的需求增加，HIE 提供商将需要向医疗保健提供者（医生、护理和行政人员）和患者清楚地传达其解决方案的好处及其信息安全措施，并将其作为增加信任的关键合作伙伴。提供便捷访问和教育措施以及特定同意的选择可能会增加患者的信任度和他们共享 PHI 的意愿。
