Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices
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Le résumé fourni par la source
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.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices
- Date Crossref
- 01/08/2023
- Éditeur
- American Society of Clinical Oncology (ASCO)
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Emory University pays non établi dans la noticeUniversité ou école supérieure
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University of Michigan pays non établi dans la noticeUniversité ou école supérieure
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University of Pennsylvania pays non établi dans la noticeUniversité ou école supérieure
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New Mexico Cancer Center pays non établi dans la noticeÉtablissement de santé
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Tahoe Forest Hospital pays non établi dans la noticeÉtablissement de santé
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University Hospitals Seidman Cancer Center pays non établi dans la noticeÉtablissement de santé
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University of Chicago pays non établi dans la noticeUniversité ou école supérieure
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American Society of Clinical Oncology pays non établi dans la noticeÉtablissement de santé
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Tahoe Forest Health System pays non établi dans la noticeInstitution
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University Hospital Seidman Cancer Center pays non établi dans la noticeUniversité ou école supérieure
Emory University, University of Michigan et University of Pennsylvania, avec 7 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.