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

Jagsi R, Suresh K, Krenz CD, Jones RD, Griffith KA, Perry L, Hawley ST, Zikmund-Fisher B, Spector-Bagdady K, Platt J, De Vries R, Bradbury AR, Bansal P, Kaime M, Patel M, Schilsky RL, Miller RS, Spence R. Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices. JCO oncology practice. 2023 Aug 1; 19(8):626-636.

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Abstract:

PURPOSE: 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. METHODS: In a survey of 1,200 patients receiving care in four CancerLinQ-participating practices, we evaluated awareness and attitudes regarding participation in data sharing. RESULTS: 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% 95%; = .002) or quality improvement uses (91% 95%; = .03) of shared data. Most respondents desired to know how their health information was used (70%), especially those of minority race/ethnicity (78% 67% of non-Hispanic White respondents; = .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; < .001). Women were less concerned about data sharing than men (OR, 0.61; = .001), and higher trust in oncologist was negatively associated with concern (OR, 0.75; = .03). CONCLUSION: Engaging patients and respecting their perspectives is essential as systems like CancerLinQ evolve.