201. Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.
- Author
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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, and Spence R
- Subjects
- Male, Humans, Female, Minority Groups, Information Dissemination, Medical Oncology, Ethnicity, Neoplasms therapy
- 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% v 95%; P = .002) or quality improvement uses (91% v 95%; P = .03) of shared data. Most respondents desired to know how their health information was used (70%), especially those of minority race/ethnicity (78% v 67% of non-Hispanic White respondents; P = .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; P < .001). Women were less concerned about data sharing than men (OR, 0.61; P = .001), and higher trust in oncologist was negatively associated with concern (OR, 0.75; P = .03)., Conclusion: Engaging patients and respecting their perspectives is essential as systems like CancerLinQ evolve.
- Published
- 2023
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