Decentralized Biobanking to Empower Patient Engagement in Biospecimen Research: Operational Feasibility Case Study

Area of Science:

• Biomedical Informatics
• Health Informatics
• Biobanking Technology

Background:

• Traditional biobanks face challenges in maintaining donor connection, impacting trust and research progress.
• Decentralized biobanking offers a solution by empowering patients to track biospecimens via a privacy-preserving blockchain network.
• This study assesses the feasibility of implementing decentralized biobanking in a large breast cancer biobank.

Purpose of the Study:

• To explore the operational feasibility of a decentralized biobanking app pilot.
• To assess stakeholder perspectives and pilot engagement.
• To evaluate the impact on biobank enrollment and donor retention.

Main Methods:

• A mixed-methods case study approach was used.
• Recruited biobank members for a pilot implementation of a decentralized biobanking app.
• Assessed operational feasibility through stakeholder interviews, pilot engagement metrics, and app activity analysis.

Main Results:

• Stakeholders identified challenges in managing expectations and integrating patient empowerment with existing workflows.
• The pilot saw a 65% increase in biobank enrollment and no withdrawals, demonstrating high donor retention.
• The app facilitated biospecimen tracking, with 89% of users successfully claiming a nonfungible token (NFT) for immutable connection to their donations.

Conclusions:

• Operational feasibility for decentralized biobanking was established, highlighting the need to manage expectations, workflows, and power dynamics.
• The technical solution demonstrated strong participant engagement and compatibility with existing biobanks.
• This approach shows potential to enhance trust, align incentives, and improve scientific collaboration in biobanking.