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Blockchain-Based Health Data Sharing in Oncology: A Cross-Sectional Survey of Patient Perceptions and Acceptance in
Matheus Villa de Moraes1, Marcos Antonio Almeida Matos1
1Hospital Santa Izabel, Escola Bahiana de Medicina e Saúde Pública, Praça Conselheiro Almeida Couto, 500 Nazaré, Salvador, BR.
Background:
The fragmentation of electronic health records in oncology hinders coordinated care, delays diagnoses, and limits therapeutic personalization. Blockchain technology has been proposed as a solution to promote secure, interoperable, and patient-centered data governance; however, patient perceptions regarding its adoption remain underexplored, particularly in middle-income countries such as Brazil.
Objective:
This study assessed oncology patients' opinions, attitudes, and willingness to share clinical information through digital systems, and evaluated the feasibility of a blockchain-based approach to restructuring secure health data sharing within the Brazilian public health context. Three research questions guided the study: (1) What is the level of digital health tool acceptance among oncology patients in Brazil? (2) Which sociodemographic factors are associated with willingness to share health data? (3) Is a blockchain-based approach feasible and acceptable for restructuring secure oncology data sharing?
Methods:
An exploratory, descriptive, cross-sectional self-report survey was conducted at Hospital Santa Izabel, a national oncology reference center in Salvador, Bahia, Brazil, between September and November 2023. A convenience sample of 110 oncology patients was recruited systematically during outpatient visits; data were collected via a QR-code-accessible, self-administered questionnaire hosted on REDCap. The 20-item instrument, developed de novo and validated via expert panel and pilot testing, covered five content domains yielding three composite scoring domains: Self-Management, Adherence, and Governance. Cronbach's alpha assessed internal consistency. Independent t-tests, one-way ANOVA, and Pearson correlations compared domain scores across sociodemographic groups. A chi-square goodness-of-fit test examined trust proportions across recipient types.
Results:
Of 110 patients approached, 104 provided sufficiently complete responses (response rate: 94.5%). The sample was predominantly female (64.3%), self-identified as Brown/Pardo (65.3%), and of lower income (57.3% earning ≤2 minimum wages). High acceptance of digital technologies was observed: 86.4% were willing to use health apps and 89.1% expressed interest in prevention-focused applications. Trust in data sharing varied significantly across recipient types (χ²=210.4, df=3, P<.001): 79.1% trusted healthcare professionals, 51.8% trusted hospitals, 15.5% the pharmaceutical industry, and 10.0% the government. Anonymization and encryption significantly increased willingness to share (83.6%). Younger patients (18-59 years) showed significantly higher Adherence scores than those aged ≥60 (mean 76.49 vs 65.83; t=2.29, df=95, P=.024). Domain reliability was good to excellent: Cronbach's α=0.8807 (Adherence), 0.8504 (Self-Management), and 0.7576 (Governance).
Conclusions:
Oncology patients in Brazil demonstrated high acceptance of digital health tools and openness to data sharing when privacy, security, and governance are guaranteed. These findings support the feasibility of blockchain-based health data management systems, provided they incorporate patient-centered principles, digital inclusion strategies, and robust governance aligned with Brazilian regulations (the General Data Protection Law, LGPD) and the Unified Health System (Sistema Único de Saúde, SUS) infrastructure. Importantly, patient support reflected acceptance of blockchain's functional principles: data security, anonymization, and auditability; rather than familiarity with the technology itself, a distinction with direct implications for future implementation studies.
Clinicaltrial:
Not applicable.
International Registered Report:
RR2-10.2196/89278.
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