In cooperation with ECHAlliance, ICT&Health interviews top leaders in digital health.
Maritta Perälä-Heape, Director of the Centre for Health and Technology at the University of Oulu (Finland) and a Digital Health Society (DHS) Board Director, talks about the value of data in healthcare, the promise of the upcoming European Health Data Space, and the new strategy for data utilization for the benefit of citizens.
Do we realize the usefulness of data in health care?
The value of data is still underestimated. Their true potential can be achieved only if we know data management principles, their importance in secondary use, and understand the technologies which are bringing new insights into preventive healthcare.
It is a complex issue that cannot rely only on technical competencies but also must involve social-based determinants. Therefore, healthcare professionals have to take action and build the data management strategy while developing new predictive data-led service concepts.
Furthermore, the value of data is higher if advanced analytic methods are involved, while the value of predictive analytics is realized only if good quality data is available. Thus, we need to build competencies in data collection, data sharing, and data processing and invest more and more in the data-based innovation mechanisms.
The European Health Data Space will make data available for scientific purposes and policy-making. Should citizens be excited or concerned?
Citizens and patients are at the centre of EHDS. Individuals will be able to share their health data with doctors or caregivers in a self-determined way, make them available to third parties such as research institutions, and use them for their own health purposes. Personalized healthcare stands to benefit significantly from the EHDS implementation.
Is EHDS an ecosystem that will boost the use of secondary data for research, personalized health, and policy-making? Is it what you were waiting for?
We need new ways to make most of the data, especially regarding their secondary use. The European-level approach to EHDS enables the creation of common principles and practices in personal data sharing, and cross-boarder collaboration in research & development between several stakeholders and organizations.
We shouldn’t hope that EHDS will solve all the challenges in data-based innovation. It is a systemic change that requires several players to understand their roles in that change and lots of hands-on practices. The implementation of EHDS needs investments in every EU Member State – especially in training and infrastructure, as well as involving all stakeholders from healthcare, health services, industry, and science.
But what will this new approach to data mean for us in the future?
Firstly, more personalized, preventive, and predictive healthcare services provision. Secondly, a more holistic view of one’s health and well-being. Thirdly, new possibilities to link self-tracking data to new, more comprehensive approaches to diagnosis, therapy, and care.
For a long time, healthcare has even dreamed of predictive models of health. But, how far are we from having personalized health tips and alerts for every citizen?
Already, we can get health tips to stay healthy, but do we care about them? Even if they were more personalized, the situation might stay the same.
The predictive service design should be changed towards health coaching. I mean interpreting the person’s risks derived from the longitudinal health data and proposing ways to reduce risks.
In the discussions around secondary use of data, the same barriers are on the top of the list: lack of good quality data, legislation, and infrastructure. You also mention leadership. What should distinguish such leadership for better use of data potential?
First of all, understanding the value of data, not only in the primary use but also in the secondary use. It’s the leaders who are building the health data strategy for the organization. They are also creating strong strategic partnerships with academia and developers to get the best knowledge and know-how on the technological development in data management, data processing, and building new insight of data for the decision making for the benefit of the citizens and the society.