JMIR Publications

ABSTRACT

Background:

The fragmentation of electronic health records (EHRs) is a major barrier to integrated cancer care, negatively impacting diagnostic efficiency and treatment continuity. Blockchain technology has emerged as a promising solution for secure health data sharing, with the potential to enhance interoperability, data governance, and traceability in complex clinical settings like oncology. However, the successful implementation of such technology is contingent upon patient acceptance and trust, which remain underexplored.

Objective:

This study aimed to investigate the perceptions of oncology patients regarding the use and control of their digital health data. We specifically assessed their willingness to share information, their level of trust in different stakeholders within the healthcare ecosystem, and the conditions under which they would find blockchain-based solutions acceptable.

Methods:

We conducted a cross-sectional, exploratory, quantitative study with 110 oncology patients at Hospital Santa Izabel in Salvador, Brazil. A structured questionnaire, validated by experts for clarity and relevance, was used. Data collection was managed via the REDCap platform. The instrument's internal consistency was assessed using the Cronbach's alpha coefficient. Descriptive, comparative, and correlational statistical analyses were performed to identify differences across sociodemographic groups.

Results:

A majority of participants demonstrated a high acceptance of digital tools for storing and sharing health data (86.4%), which increased significantly when security measures like anonymization and encryption were assured (83.6%). Trust in data sharing varied substantially by institution: it was highest for healthcare professionals (79.1%), moderate for hospitals (51.8%), and considerably lower for the government (10%) and the pharmaceutical industry (15.5%). A statistically significant difference was found in technology adherence by age, with younger patients (18-59 years) showing higher acceptance than older adults (p = 0.024). The survey domains—self-management, adherence, and governance—demonstrated satisfactory internal consistency (Cronbach's alpha ranging from 0.75 to 0.88).

Conclusions:

Our findings indicate a high willingness among oncology patients to adopt digital health tools for data management, provided that robust security, transparency, and patient empowerment are central to the design. The significant trust gap between clinicians and institutions like government and industry underscores the critical need for clear communication and trustworthy governance models. To foster confidence and promote equitable access, future digital health platforms must be designed to be accessible, reliable, and centered on patient autonomy. Clinical Trial: This was an observational, cross-sectional study and did not involve a clinical intervention. Therefore, registration in a clinical trials registry (such as ClinicalTrials.gov) was not applicable. The study was conducted with the approval of the Institutional Review Board (CAAE: 70726523.3.0000.5520). All study records, including de-identified raw data, the survey instrument, and consent forms, are securely archived by the authors in accordance with institutional and ethical guidelines.