We have finished the phase 2 of our research project in summer 2021. Similar to Phase 1, we have been discussing Distributed Ledger Technologies –commonly known as blockchain– in healthcare. We aimed our research to be ‘bottom-up’, instead of ‘top-down’. Meaning that we gave weight to the voices we heard and let the results from our engagement steer the further research. From phase 1, out of three scenarios, the data donation platform was seen as the most interesting for participants.
In phase 2 we stuck with the data donation scenario, and develop it further to understand what business models would participants want? This crosses several work package themes in our research project, first and foremost the business sustainability, but also touched ethical and legal issues, as well as socio-technical questions, e.g. do views of possible interactions with a data donation platform change based on the business model?
Overall, we had three models to explore which would be supported by a technical platform: Co-operative, Private business, or the novel idea of a data trust. Within these scenarios we also discussed options for oversight and decision-making, as well as potential profit distribution.
With the further development of the data donation scenario, we also changed our methodological approach. Within the idea of a data donation platform, we wanted participants to be imagining as being part of it. So we asked them to be early adopters of the platform and develop a character that is a user and participant of the platform. All questions were then viewed from the characters point of view.
Overview and Summary of the Results
The preferred business model for a data donation platform is a cooperative. Participants viewed it as the most ethical option that already incorporates the idea of solidarity. Second to that was the data trust, however, as it is a new concept for data stewardship. This is hard to fully grasp with no real trustees to put your trust in, but viewed overall interesting:
“As far as the trust is concerned, [character name] likes the idea. It means he won’t have to spend lots of time setting and reviewing privacy settings every time there’s a change. He can actually leave that up to the trustees to make that decision for him.”
And while participants viewed private businesses less bureaucratic, innovate and costumer friendly, they were concerned about the profit motive. One of the major concerns were that if data is brokered and sold, this might create obstacles to data access for research endeavours which can’t afford the costs.
- Viewed as most ethical/solidarity
- Oversight & Decision making as most discussed
- Varying views for profit distribution
- Re-invest in research or platform/coop?
- Concerns on obstacles to data access due to costs
- Direct personal gains more acceptable (compensation or direct heath insight)
- Emphasis on transparency & feedback
- Viewed as less bureaucratic, streamlines, innovate & costumer friendly
- Trust needed in Trustees
- Seen as useful gatekeepers
- Accountability & regulation as key points
What else did we learn and what’s next?
We had a lot of crossover themes from phase 1. Similar concerns and questions came up.
However, governance and decision-making are big issues were important and much discussed in both phase 1 and 2. In the next and final phase we want to explore these a bit more!