Fair health sector data ecosystems – a major asset for Finland’s future

The Finnish health sector should create fair health data ecosystems and move from value chains towards true value networks and open data sharing ecosystems where value is shared more evenly between different actors. In data ecosystems, network members understand the value that data creates together, share it within common ground rules, and drive innovation and new business.

When change is made by applying the principles of a fair data economy – trust, access, human-centredness, value creation, knowledge and data sharing – the recipe for success is ready. While simple, this recipe requires a new way of thinking and acting, trusting collaboration, and understanding of business models.

Health sector ecosystems still have far to go to reach fourth phase of data economy

In the ecosystem workshop on business models, we asked health sector actors where Finnish health sector ecosystems are in the process of leveraging data and partnerships. We grouped health sector actors into four phases in terms of data use:

1. the organisation only uses its own internal data
2. the organisation uses external data sources and open data in addition to its own data
3. the organisation forms a loose network of data sharing with others
4. the organisation acts as an integral part of a tight-knit data ecosystem – with clearly defined shared services, rules, agreements, and operating models – that provides a seamless service to end customers.

According to the workshop participants, Finnish health sector organisations are fairly evenly split between the first, second and third phases of using data and partnerships. Of the 43 respondents, a slight majority of 15 respondents thought that most Finnish health data ecosystems are at the third phase. Fourteen respondents thought that most organisations are at phase two, and 11 respondents felt they were in the first phase. Only three respondents felt that the fourth phase had been reached.

Why is this and what is needed to get Finnish health ecosystem actors to phase four? What problems need to be solved? We sought answers by interviewing 20 experts from 15 different health sector organisations, including companies, public sector and regional actors, and research institutes.

Main problems with legislation, incentives, business and skills

It emerged from the expert interviews that ecosystems are key, often indispensable, for future business, growth and opportunities. Health sector challenges are almost always multi-dimensional and systemic, because of which few organisations can develop without partners.

The main problems were seen in terms of legislation, conflicts of interest between actors, lack of incentives, business challenges, political will and skills. Several interviewees mentioned challenges of the secondary use of health data. Lack of data availability within the timeframe set by legislation was seen as a problem, directly affecting companies’ business, Finland’s reliability and access to global clients.

Other identified challenges include the lack of a service business logic, problems of scaling up in healthcare, earning models, the project nature of publicly funded activities and lack of a clear approach to healthcare development and innovation. Short-termism in business objectives was also seen as a challenge.

Plenty of room for improvement was identified in skills, such as gaps in technology skills. Many people, especially in the policy arena, fail to understand what the data economy is all about, which impedes the development of data ecosystems.

Value creation of data sharing must be understood, funding bolstered and access to data enabled

The three main challenges that the interviewees felt should be addressed on the road to fairer value creation were 1) change in the culture and ways of thinking, 2) funding issues and 3) technological and data-related issues.

Changes in the culture and ways of thinking

There should be a better understanding of the benefits of data sharing and an awareness that value is created through collaboration and data sharing. Too often operations happen in ego systems rather than actual ecosystems: currently, data is often seen as a property of the organisation instead of a shared, renewable resource. Learning a new way of doing business and co-operating takes time.

Funding problems

Even the best collaborative groups will dry up without funding. Big investments and seed money does not flow to the health sector. Funding models should be more long-term and broader to support action in ecosystems. This does not mean a one-off EUR 100 million investment, but rather targeting seed funding to ecosystems. The health sector needs a stronger funding sphere and structures that attract foreign investments.

Technological and data issues

Often, all personal data is given a maximum security classification, while patient, health and well-being data could be treated according to its risk classification. Data quality is seen as a liability issue: who is responsible for the quality of data? Multiple IT solutions and siloed patient information systems make sharing data more difficult. In addition, compatibility standards are often contradictory. No reliable data is available on lifestyle and the social environment, which account for about 80 per cent of disease treatment.

The creation of high-quality services requires combining social services and healthcare data. Access to real-time data should be enabled and database interfaces should be made open and easy for companies to use to create better services.

Need for a shift in mindset, understanding of business models and good examples

The market for products and services based on health data is still developing. This was seen as one reason why the development of health sector data ecosystems is still in an early phase. There are many opportunities and ideas, but the journey toward open data sharing ecosystems has only begun.

This will require better public-private co-operation, such as between companies, public authorities and research organisations, and easier processes for co-operation. The business models related to data ecosystems need to be understood better and their significance should be highlighted in public debate. Good examples of functioning and successful fair data ecosystems in the health sector could stimulate the involvement of other actors.

A shift in mindset towards value and outcome-based approaches is also needed. Healthcare business models focus on treatment of illnesses, instead of prevention and models based on values and outcomes, aimed aim at maintaining health. Creating new business models in health sector data ecosystems requires shifting the focus towards an outcome-based approach.

This requires bold innovation, a culture of experimentation and an increasingly diverse use of data, including across different sectors. Data related to well-being, such as grocery purchases, workout logs, pedometry or air quality, will become increasingly important and needs to be linked to the services provided to people. Value must be created for individuals, companies, organisations and society.

A recipe for success and practical steps towards fair data sharing ecosystems

How do you start building tomorrow’s successful health sector data ecosystems? Here is one recipe to follow:

• Consider what phase your organisation is currently at in the process of leveraging data and partnerships. Consider the question in terms of the four phases listed above
• How can your organisation move to the next phase? What will it require and what new (business) opportunities will it bring to your organisation and your partners?
• What does your organisation seek in ecosystems, what is your role, and what added value of working in ecosystems?
• What data do you share with partners, and what data do you need in addition to your own, and who has it?
• Find out about the different tools and materials that can help you and your partners to build business based on sharing data together. The Rulebook for a Fair Data Economy offers tools and contract templates to help you build your data network and is a great toolkit to use. For more information on Finnish health data ecosystems, their competitiveness and the maturity of the fair data economy, please see Sitra’s working paper (in Finnish, including a summary in English). For a more in-depth perspective on ecosystem business models, please see the summary (PDF) of the ecosystem workshop mentioned earlier.
• Learn about the six principles of the fair data economy: trust, access, human-centredness, innovation, competence and sharing by reading the summary (PDF in Finnish) of the first ecosystem workshop. Consider whether you think the ecosystems you are involved in are fair. What practical steps can you take to strengthen the principles?
• Take part in Sitra’s ecosystem workshops, where you can get up-to-date information on future opportunities, build a common understanding of the competitiveness of Finnish health sector data ecosystems and learn from the views of other actors and experts in the sector. The next ecosystem workshop Wellbeing from health data – Finland in 2030 will be held in Finnish on 31 March 2022. You can sign up for the invitation list by sending your contact information to Sitra to the address healthdata@sitra.fi.
• Moving towards new data sharing business opportunities may feel difficult at first, but you can learn by doing and there are many tools available.

The series of workshops and the interviews for this article are part of Sitra’s Health Data 2030 project, aimed at promoting the competitiveness of Finnish health sector ecosystem through the fair data economy.