Trinidad M Grace, Platt Jodyn, Kardia Sharon L R
Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI 48109-2054, USA.
University of Michigan School of Public Health, Ann Arbor, MI 48109-2054, USA.
Humanit Soc Sci Commun. 2020;7(1). doi: 10.1057/s41599-020-00641-5. Epub 2020 Nov 11.
Healthcare systems are using big data-driven methods to realize the vision of learning health systems and improve care quality. In so doing, many are partnering with third-party commercial companies to provide novel data processing and analysis capabilities, while also providing personal health information to a for-profit industry that may store and sell data. In this research we describe the public's comfort with sharing health data with third-party commercial companies for patient and business purposes and how this comfort is associated with demographic factors (sex, age, race/ethnicity, education, employment, income, insurance status, and self-reported health status), perceived healthcare access, and concerns about privacy. We surveyed the US public ( = 1841) to assess comfort with sharing health data with third-party commercial companies for patient or business purposes and examined whether there was a difference between comfort with data sharing for patient or business purposes. Univariate and stepwise regression modeling is used here to estimate the relationship between comfort with third-party commercial companies for patient and business purposes (outcomes) and demographic factors, self-reported health status, perceived healthcare access, and privacy concerns. The public is more comfortable sharing health data with third party commercial companies for patient purposes as compared to business purposes (paired = 39.84, < 0.001). Higher education was associated with greater comfort with sharing health data for patient purposes ( = 0.205, < 0.001) and decreased comfort with sharing health data for business purposes ( = -0.145, = 0.079). An inverse relationship exists between privacy concerns and comfort with sharing health data for both patient ( = -0.223, < 0.001) and business purposes ( = -0.246, < 0.001). Participants ages 45-59 were less comfortable sharing health data with third party commercial companies for patient purposes ( = -0.154, = 0.0012) than participants aged 18-29. Proactive acknowledgment of privacy concerns and better communication of the steps being taken to protect the privacy of health data can increase patient comfort. Healthcare systems may be able to increase public and patient comfort with sharing health data with third-party commercial companies by emphasizing the patient-centered benefits of these partnerships.
医疗保健系统正在使用大数据驱动的方法来实现学习型医疗保健系统的愿景并提高护理质量。在此过程中，许多机构正在与第三方商业公司合作，以提供新颖的数据处理和分析能力，同时还将个人健康信息提供给一个可能存储和销售数据的营利性行业。在本研究中，我们描述了公众对于出于患者和商业目的与第三方商业公司共享健康数据的接受程度，以及这种接受程度如何与人口统计学因素（性别、年龄、种族/族裔、教育程度、就业情况、收入、保险状况和自我报告的健康状况）、感知到的医疗保健可及性以及对隐私的担忧相关联。我们对美国公众（(n = 1841)）进行了调查，以评估出于患者或商业目的与第三方商业公司共享健康数据的接受程度，并研究出于患者或商业目的共享数据的接受程度之间是否存在差异。在此使用单变量和逐步回归模型来估计出于患者和商业目的与第三方商业公司共享数据的接受程度（结果）与人口统计学因素、自我报告的健康状况、感知到的医疗保健可及性以及隐私担忧之间的关系。与出于商业目的相比，公众对于出于患者目的与第三方商业公司共享健康数据更为接受（配对(t = 39.84)，(p < 0.001)）。高等教育与出于患者目的共享健康数据的更高接受程度相关（(β = 0.205)，(p < 0.001)），而与出于商业目的共享健康数据的接受程度降低相关（(β = -0.145)，(p = 0.079)）。对于出于患者（(β = -0.223)，(p < 0.001)）和商业目的（(β = -0.246)，(p < 0.001)）共享健康数据，隐私担忧与接受程度之间均存在负相关关系。与18 - 29岁的参与者相比，45 - 59岁的参与者对于出于患者目的与第三方商业公司共享健康数据的接受程度较低（(β = -0.154)，(p = 0.0012)）。主动承认隐私担忧并更好地传达为保护健康数据隐私所采取的措施可以提高患者的接受程度。医疗保健系统可以通过强调这些合作关系以患者为中心的益处，来提高公众和患者对于与第三方商业公司共享健康数据的接受程度。
