JMIR Publications

ABSTRACT

Background:

Medical data sharing initiatives are crucial for advancing research, improving patient outcomes, and fostering innovation in healthcare. With the advent of blockchain technology, there has been significant interest in exploring its potential to enhance the security, transparency, and efficiency of medical data sharing.

Objective:

This study aimed to survey and analyse various medical data sharing initiatives, focusing on their use of blockchain technology, incentive structures, ownership models, governance mechanisms, business models, transaction models, and sustainability strategies. The objective is to provide a comprehensive overview of the current landscape and identify factors that contribute to the success and longevity of these initiatives.

Methods:

The study employed a snowball sampling methodology to identify relevant initiatives, using a combination of academic literature reviews, web searches, and consultations with experts. Identified initiatives were screened and analyzed based on predefined criteria, including organization, description, country, blockchain usage, incentives, ownership, governance, business model, transaction model, and sustainability. A re-analysis was conducted to assess the current operational status of the initiatives

Results:

The survey identified 42 medical data sharing initiatives. The majority of these initiatives were based in North America and Europe, with a significant number utilizing blockchain technology. Incentives for participation varied, with many initiatives relying on self-interest or altruistic motivations. Ownership models included private, public-private partnerships, and membership-owned structures. Governance models were diverse, with board-based and regulation-based mechanisms being the most common. Business models predominantly focused on for-profit structures, with various transaction models including direct monetary transactions, single token systems, and reward-based mechanisms. Sustainability strategies were varied, with selling access to users and membership fee-based models showing higher rates of continuation.

Conclusions:

The survey highlights a diversity of approaches in medical data sharing, with blockchain technology playing a significant role but not serving as a universal solution. Various incentive, ownership, and governance models reflect the evolving nature of the field, with for-profit business models being predominant. Sustainability strategies range widely, aiming to balance revenue generation with accessible data provision. These findings emphasize the need for context-specific frameworks that address privacy, security, and ethical considerations while promoting efficient and equitable medical data sharing.