Examining public views on decentralised health data sharing

Abstract

In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining 'proof' of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.

Fig 1. This slide was presented to a subset of participants during the focus group to introduce the data donation scenario with a fictionalised character with the following script: “Chris has a rare liver disease.

He is also a data enthusiast and uses various devices to track and monitor his movements, behaviour and bodily functions to stay as healthy as he can. He is keen to help use his medical data to try and advance treatments for other people who share the same condition. Despite undertaking a lot of online research, he doubts that pharmaceutical companies will invest in finding a cure for his condition because it only affects a tiny proportion of the population.”

Fig 2. This slide was presented to a subset of participants during the focus group to highlight the blockchain features of the data donation scenario.

There were three feature slides for each scenario. This data donation blockchain feature slide was presented to participants with the following script: “Chris decides to download the CDIP data donation app on his smartphone and registers his interest in sharing his health data as well as taking part in health research and clinical trials. He considers which health data he would like to donate and then sets up a smart contract that automatically approves his consent to share anonymized data from his electronic health record with the British Liver Research Trust.”

Fig 3. Data donation scenario blockchain feature summary slide.

This slide was presented to a subset of participants during the focus group to summarise the blockchain features of the data donation scenario with the following script: “1. Automation & granular consent: Patient information exchanged via the CDIP platform can be de-identified and permission to access this can be granted through smart contracts. This consent is a digitally encoded agreement between two people in the form of computer code which will only be executed if a number of conditions are met. For example, Chris can decide and say that his GP can access his Fitbit data, but pharmaceutical companies cannot. For example, a smart contract might be written to automatically enable healthcare professionals to access a patient’s medical record only if certain conditions are met: (1) that the patient has consented Healthcare Professionals (HCP) access and (2) the HCP can prove authority to access confidential patient files. 2. Immutability: Transactions on the blockchain are permanently recorded. For example, this makes it almost impossible for a user to alter details of a person’s medical history or the results of a clinical trial. 3. Transparency: Personal data will NOT be stored directly on the CDIP platform but ‘pointers’ of all data transactions will allow any users to be able to trace the flow of data between different entities. Transactional data stored on the blockchain will be visible to all approved participants. You can see/verify who is accessing your health data at every stage, for example if your doctors have accessed or viewed your data.”