Examining public views on decentralised health data sharing

“…cyber-attacks on care institutions and the subsequent implications for patient data privacy [13] have led researchers to consider alternative data exchange models for better securing and protecting patients’ health data, including Internet of Things (IoT) approaches [14, 15] and DLTs [16, 17].”

“Chat comments were moderated by a researcher and any points raised via this facility were introduced to verbal discussions throughout the duration of the focus group.”

“Several studies have explored the use of smart contracts, zero-knowledge proofs [5, 17, 22–25], and non-fungible tokens (NFTs) [26] to provide patients with new data-sharing capabilities that prioritise user privacy, data integrity and security.”

“…S ub m i tt e V e r s i o personal health monitoring technologies offer additional benefits when compared to more traditional, centralised models [1,2]. introducing DLT within health the gap of user-oriented of a longitudinal co-design enable (i) patients within ) provide clinicians and health…”

“Discussion groups were capped at a maximum of six participants in order to maximise opportunities for all participants to express their views.”

“Several studies have explored the use of smart contracts, zero-knowledge proofs [5, 17, 22–25], and non-fungible tokens (NFTs) [26] to provide patients with new data-sharing capabilities that prioritise user privacy, data integrity and security.”

“Project participants were provided with an information sheet about the study and the project team obtained written, informed consent to take part in the project prior to engaging in focus group discussions.”

“Extensive investigation has been conducted to assess of leveraging novel applications of DLT technologies in 16,19–21].”

“In contrast to previous work [8–10], we aim to prioritise and account for a broad range of end-user needs and concerns.”

“The concerns highlighted by our participants echo existing debates within legal literature around DLT application with regards to legal frameworks such as GDPR [3, 43, 44].”

“As the DLT provides both a transparent and immutable ledger of all transactions to all nodes, this holds significant appeal in terms of auditing capabilities [18].”

“Each focus group included discussion based on at least two of the aforementioned scenarios which were rotated between discussion groups in order to ensure equal exposure.”

“In order to enrich participant discussions and broaden the debate, we included a range of alternative stakeholder viewpoints and data sharing contexts to help the public to imagine a wide range of perspectives [38].”

“Discussion in focus groups around smart contracts echoes the current research around informed consent in healthcare [42].”

“Discussion groups were capped at a maximum of six participants in order to maximise opportunities for all participants to express their views.”

“This type of approach is often used for engaging a lay audience with unfamiliar, emerging technologies, such as discussion methods derived from clinical research [33] and contextualising properties of technology within more familiar terms of reference [34].”

“.’s [30] work is representative of an early attempt to involve the public in the co-creation of a blockchain-based technical artefact that aimed to seed follow-on discussions exploring attitudes towards the use of DLTs to “manage, control and share” [30] personal health data.”

“Extensive investigation has been conducted to assess of leveraging novel applications of DLT technologies in 16,19–21].”

“Another narrative and featured a health passport offering an authoritative, tamper-proof record of a person’s health or immunisation status [39].”

“The resulting series of narrative use-case scenarios were located in the wider area of blockchain and healthcare data management and included material drawn from related work into recent research trends and use cases (For an overview please visit the CDIP project website: https://cdip.lancs.ac.uk/).”

“In contrast to our focus on public concerns, Yeung [29] engaged with care professionals and blockchain experts to derive implementation challenges of block-chain-based applications based on views from healthcare organisations.”

“However, the consequences of high-profile cyber-attacks on care institutions and the subsequent implications for patient data privacy [13] have led researchers to consider alternative data exchange models for better securing and protecting patients’ health data, including Internet of Things (IoT) approaches [14, 15] a…”

“For example, parallels can be drawn to legislation introduced in Wyoming where blockchain enabled, decentralized networks still have to register with a named contact to resolve liability and agency issues [45,46].”

“This type of approach is often used for engaging a lay audience with unfamiliar, emerging technologies, such as discussion methods derived from clinical research [33] and contextualising properties of technology within more familiar terms of reference [34].”

“This piece of work explicitly aimed to identify user requirements as an initial assessment of laypersons attitudes to DLT features and how they contextualized them within their experiences of interacting with technology-enabled healthcare.”

“Sharing personal health data from clinical records, wearable fitness and location-tracking devices enables clinical researchers to deliver more timely and effective medical interventions to address significant health challenges in society [12].”

“Moreover, several studies [23,27] have investigated the use to streamline the sharing of patient healthcare records.”

“Therefore, there is a further need to recognise the role of patients as data subjects and to examine public perceptions of the social and ethical ramifications of introducing DLT within health data sharing eco-systems [6, 7].”

“In addition, decentralized data sharing offers several benefits, such as increased privacy and security, improved data ownership and control, and enhanced transparency and accountability [8].”

“Decentralised data sharing can support these ethical considerations by enabling collective decision-making, facilitating consensus, and transparent governance models [36].”

“…to systems, DDS provides control and management of data, increased privacy, and security measures, as well as enhanced levels of accountability, accessibility, and transparency through the distribution of data across multiple nodes without the reliance on a central authority [17], [18], [19].”

“Based on our formative grounding of DAO design elements and our previous research in the area of blockchain and health, including qualitative focus groups [37], we developed a series of materials including pre-activity information packs, a deck of feature cards and a series of workshop tasks.”

“Stakeholder consultations addressed technical intricacies, legal implications, societal concerns, and ethical considerations [46].”

“In the following we will briefly discuss two ethico-legal issues that are raised by the proposed model, based on our own research on blockchain enabled consent for health data sharing and on data trusts (Bartlett et al. 2024, Cunningham et al. 2021, 2022, Neumann et al. 2023, Redhead et al. 2025).”

“While the benefits of data sharing are undeniable, the process of transferring data on a global scale presents various challenges, which require standardized guidelines and legal frameworks to address effectively [9,16].”