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November 3, 2020

People As Co-Architects Of Their Health In Data-Driven Economies

In the recently published working paper “Towards trustworthy health data ecosystems,” Finish Innovation Fund Sitra outlines a framework for sustainable reuse of data in future healthcare systems. Interview with Jaana Sinipuro, Project Director responsible for IHAN – Human-Driven Data Economy (Sitra).

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In your opinion, “the future belongs to data-sharing ecosystems with multiple ecosystem orchestrators,” therefore, more vital cooperation between different stakeholders is required. How to break the data silos that are still strong in healthcare?

It all starts with mental change. In order to break the data silos, we have to understand and admit that the future is too complex and digitalization, treatments, and research develop so fast that no one can master this alone. Tailoring services to individual needs more transparency and returning value to individuals. But naturally, with an ever-increasing amount of data and near-endless opportunities using it, we need tools to reign in technology and digitalization. Ensuring trust in the continuous flow of data also requires strong cybersecurity and privacy protection tools. We need to make sure that our systems and practices are sustainable for the future.   

What are the biggest obstacles on the way towards trustworthy health data ecosystems? How to overcome them?

There are many of them: attitudes, semantic interoperability, and data governance practices in general. We have to focus on individuals, build tailored services around them, explore and exploit technology, and overcome technical barriers to data quality and interoperability. Still, we cannot allow technology providers to gain control over us. I hope that there will be more professionals who love not just treating people or doing research but also exploring technology potential in the future.

Individuals generate more and more data that could be valuable for decision-making, research, or to develop new services. How to navigate who, when, how, and for what purpose is using the data so that every individual can control it, but at the same time, he or she won’t be overcharged or lost in giving or denying consent?

We should focus on services and use cases and grade data into different categories where the legal basis of using data differs. Not all data needs to be handled equally. Privacy, cybersecurity, and respecting individual rights need to be built in as “default” when addressing the data. Transparency in data processing is also required. Companies that “add extra value” for the convenient and intuitive use of their digital services should be rewarded. But even those companies that manage to communicate that their solutions exceed the minimum GDPR requirements. Simple and easily understood user interfaces for controlling personal data are needed. It would be optimal if individuals could recognize fair digital services like they recognize fair trade products.

Could you please list the key recommendations of the working paper by Sitra?

Let’s focus on GDPR as an enabler for human-centricity and develop coherent data practices based on that shared legislative framework. In practice, we need to create basic guidelines in interpreting GDPR into practice across Europe. That’s our call on policymakers: designing a common baseline and consensus on essential data governance practices and then adding detailed requirements if needed. Companies should respect GDPR rights by default in their services. Those who add little extra on transparency, ease of use, and sharing of data for innovations through trust-based ecosystems should be rewarded and branded as “responsible companies.” On the demand side, individuals must improve their data literacy and demand more tailored and convenient services. Remote consultations don’t just make services more accessible they are also cost-efficient.

What concrete steps should be taken to ensure ethical data-sharing in the future while respecting the rights of individuals?

We just witnessed during the COVID-19 pandemic that the siloed approach does not work. Cross-sectoral data sharing from health records to mobility data and consented data from individuals is essential. Still, we shouldn’t risk our core values and fundamental rights given to us by GDPR (right for data removal, to be forgotten), not even in a time of crisis. Standardization and shared rules, i.e., basic requirements on “Data Spaces made in Europe,” are needed, especially if we want to benefit from people’s willingness to donate their data for research.   

Regarding data-processing and AI, Europe lag behind the USA and China. Is it real to make Europe a leader in data-driven innovation?

AI isn’t just about technology – it is also about knowledge, expertise, and clinical skills for developing better AI-based solutions. Europe is well equipped in that sense, having a good skills base. We should separate services from data and ensure that we do not let others exploit our valuable data assets without us having a role in it.

Data as the common good is a good slogan, if only it serves those generating data. I also think that the data economy has matured a lot since the early days. Regulators, competition authorities, and policymakers are putting more pressure into current practices of using data. Together with change coming from inside the industry and people’s eroding trust in unresponsible use of data, it will hopefully create the potential for something new, for a purpose-driven tech made in Europe.    

Is there a guarantee that patients will benefit from data-reuse and secondary use of data in healthcare?

Of course, if you think about new treatments or medications, the time span to see benefits from data is very long. But when you think about data in decision-making and service provision planning, I think the results are near to immediate. Service providers can offer timely and effective services. Not to speak about returning combined (and scored) data back about your nutrition, lifestyle, and genomics and how they affect your handling of severe disease.   

Download the full report “Towards trustworthy health data ecosystems” by Finish Innovation Fund Sitra.

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