The trinational DayOne Health Data Futures initiative is activating a thriving and sustainable cross-border health data ecosystem in the Basel Area.
We measure our heart rate, monitor our blood sugar level and receive physiotherapy via mobile apps: Today, access to digital healthcare is easier than ever before. With this, an increasing amount of health data is being produced, managed, and used. But many questions regarding health data remain unanswered:
- Who can and should have access to health data?
- How do we maintain interoperability between different data and systems?
- Can health data belong to a certain nation?
- Who will drive the development of data assets – and is it what we want?
- How can we drive a desirable future for health data, starting in our region?
Digital healthcare and its data needs to help patients first. But we also see that the rapid growth of data moulds the health industry and creates new business ecosystems. To keep up with the pace, it’s crucial for the public, businesses and governments to understand the potential and challenges of this transformation in healthcare. To fuel this process, DayOne launched the Health Data Scenarios project in 2020. Neue Regionalpolitik and the canton of Basel-Landschaft are supporting the trinational initiative.
What do we do?
The Health Data Scenarios project builds a cross-border and cross-stakeholder network, develops projects and strengthens a sustainable ecosystem around health data.
These are our tasks:
- We identify the potential and areas for cross-border collaboration.
- We analyse the needs and joint measures in research, supply and location promotion.
- We form cross-border consortia to implement projects in the field of health data.
How? A unique process for international cooperation on health data.
Step 1. Grasping the future with health data scenarios
To describe the future of health data, we created likely scenarios for the development of health data systems based on the insights of 50 experts from the region, then prioritized and further defined 10 preferred scenarios as shown in Fig. 1.
Scenarios were grouped according to the inclusion of these four features:
- Technology: the main asset for digitalization.
- Culture: the willingness of members of the public to participate actively in their health and well-being.
- Stakeholders: the potential of new players replacing the traditional providers who currently dominate.
- Regulation: the movement toward a global harmonization to overcome the current fragmented environment and localized implementation.
Then, following further analysis, the occurrence of these factors resulted in the following four Scenario Clusters or archetypes:
Scenario Cluster 1 “flat market”: Government drives innovation (if at all) in a flat market.
Scenario Cluster 2 “buyer market”: Consumer behavior drives innovation, creating a buyer market.
Scenario Cluster 3 “ecosystem-oriented market”: Democratization of technology and data access drive innovation, creating an open ecosystem-oriented market.
Scenario Cluster 4 “vendor market”: Capital and incumbents drive tech-focused innovation, creating a vendor market.
Fig 1. Scenarios clusters
Then, these key scenarios were used to derive key insights from experts representing the entire value chain of health data in the trinational area.
- We expect disruptive change but it is unclear which forces will drive it.
- The role of consumers will significantly change the healthcare system.
- Stakeholders have a high desire for cultural change in the healthcare system.
- Stakeholders expect technological disruption rather than cultural change.
- People and companies’ ownership of health data must co-exist in a fragmented system.
- Closed systems and mistrust are slowing down the transformation of health systems.
Step 2. Understanding health data with collaborative workshops
Key findings were then used to inform a number of multi-stakeholder workshops that are planned to address these questions:
What are the challenges facing the health data future from a patient’s perspective?
Patient: Transporter of Health Data
- Small Patient Population (isolated)
- Lack of Health Data and Access to it (disoriented)
- Lack of coordinated Support (abandoned)
Fig 2. The swamp – A patient perspective
In June 2022, stakeholders discussed the ideal conditions of innovation required to solve barriers in healthcare. Workshop participants ranked the impact of these conditions.
- An overall, high ceiling effect was observed, which is often seen in healthcare since all these conditions are of high importance and interconnected.
Trust and interoperability scored the highest in importance, followed by data protection, data access, then value and patient experience.
Fig 3. A robust and comprehensive governance of health data may increase health benefits and value to the health system. (Adapted from Effy et al 2018)
What are the innovation gaps in the future of health data?
In September and November 2022, participants with a background in technology discuss the gaps facing collaborative innovation by focusing on the following enabling technologies as use cases:
- clinical decision support system
- image analysis
- electronic health records
- conversational AI agents.
High level stakeholders including a patient and a clinician and researchers in genomics, public health, health insurance and other areas will be present.
Step 3. Build new health applications with pilot projects
The third phase encompasses the creation of a joint portfolio of pilot projects involving potential consortium partners. We expect the formation of up to 10 innovation and research projects involving the cross-border cooperation of about 10 SMEs. We also expect that this will result in about 10 services and health applications that will achieve a noticeable improvement for patients. Interested? Be sure to get involved.
Our appeal to regional stakeholders
Become a sought-after health data shaper – Share your knowledge and experience. Get to know people and learn insights that are hard to find elsewhere.
Design health projects that you want to see in the future – Apply your knowledge in our cross-border projects and benefit from the experience and questions of your peers.
Do you know what patients need? – Support the deployment of patient-centric solutions. Ultimately, only solutions that meet the needs of patients and caregivers will be deployed and generate economic benefit.