Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.

Abstract

CancerLinQ seeks to use data sharing technology to improve quality of care, improve health outcomes, and advance evidence-based research. Understanding the experiences and concerns of patients is vital to ensure its trustworthiness and success. In a survey of 1,200 patients receiving care in four CancerLinQ-participating practices, we evaluated awareness and attitudes regarding participation in data sharing. Of 684 surveys received (response rate 57%), 678 confirmed cancer diagnosis and constituted the analytic sample; 54% were female, and 70% were 60 years and older; 84% were White. Half (52%) were aware of the existence of nationwide databases focused on patients with cancer before the survey. A minority (27%) indicated that their doctors or staff had informed them about such databases, 61% of whom indicated that doctors or staff had explained how to opt out of data sharing. Members of racial/ethnic minority groups were less likely to be comfortable with research (88% <i>v</i> 95%; <i>P</i> = .002) or quality improvement uses (91% <i>v</i> 95%; <i>P</i> = .03) of shared data. Most respondents desired to know how their health information was used (70%), especially those of minority race/ethnicity (78% <i>v</i> 67% of non-Hispanic White respondents; <i>P</i> = .01). Under half (45%) felt that electronic health information was sufficiently protected by current law, and most (74%) favored an official body for data governance and oversight with representation of patients (72%) and physicians (94%). Minority race/ethnicity was associated with increased concern about data sharing (odds ratio [OR], 2.92; <i>P</i> < .001). Women were less concerned about data sharing than men (OR, 0.61; <i>P</i> = .001), and higher trust in oncologist was negatively associated with concern (OR, 0.75; <i>P</i> = .03). Engaging patients and respecting their perspectives is essential as systems like CancerLinQ evolve.