Questions and challenges on the potential of healthcare data
In a world that has generated 90% of all data over the last two years, health data is an invaluable resource whose potential we are just beginning to explore. The analysis of big amounts of data can help us improve medical outcomes and accelerate research but many questions arise on the road towards a world in which medical decisions will be primarily made by artificial intelligence. In the workshop ‘Unleashing the power of data through primary and secondary use’ held at the HIMSS Europe & Health 2.0 Conference, professionals working in the European healthcare ecosystem discussed the challenges and opportunities of big data in health.
In our daily activities, we generate massive amounts of data which can be turned into valuable information for healthcare. The challenge today is to have access to this data and to be able to interpret it appropriately. We also need a personal space where all the data is stored so we can decide who we want to share it with and for which purposes.
Worldwide, there are some initiatives working in this direction, like the Data For Good Foundation (Denmark), ‘a safe harbour and digital space that allows citizens to exercise the right to control their own personal data’. Another initiative is Salus Coop, a citizen cooperative on health data based in Barcelona that ‘aims to legitimize citizens’ right to control their own health records while facilitating data sharing to accelerate research.’
Another challenge is the standardisation of the data. Healthcare data can be very variable: medical health records, doctor notes, blood test results, medical images, patient-reported data from wearables and apps… To standardise the data and turn it into specific knowledge is another technical challenge. Interoperability between different systems is also essential to allow a fluid movement of data in the healthcare ecosystem. And we should be aware of the security risks that will threaten our data. Health data is one of the most coveted pieces of information by hackers as it is sold in the black market at a much higher price than other types of personal data. So security and privacy are important concepts that we will need to take into account.
But apart from the technical problems, other types of challenges arise.
To exercise the power that data brings to us we will need digital skills and education about data management and data interpretation. We will also have to make decisions regarding:
- Who are we going to share our data with? And for what purposes?
- How can we make money or have certain compensations in exchange for our data?
Concepts like trust, transparency and ethics need to be at the table when dealing with health data. Another key concept is communication. We know of some public big data initiatives that were launched with the goal to improve research and innovation but failed because of bad communication between political authorities and the public. For example, the NHS Care.Data program in the UK and the VISC+ project in Catalonia. Some people are still reluctant about the use of their health data for research, especially when there is not a clear message about how their data is going to be used, so transparency from governments and organisations is a must.
Some ideas to unleash the power of data
The last part of the session was dedicated to the presentation of proposals by the working groups to encourage the use of health data for the benefit of society as a whole.
One of the proposals focused on the need of a strong governance and a regulatory framework to stimulate an ethical use of health data.
Regarding the economic opportunities that big data brings for citizens, it was highlighted that Europe should work to turn into a hub to attract businesses in which ethics, transparency and trust would be an added value in comparison with other parts of the world.
Another proposal was to find ways to revert to society the economical benefits of the exploitation of citizens’ data.
Regarding the need for better communications, it is important that the different stakeholders engage into a dialogue so the public can make informed decisions about their data. ‘We should not avoid talking about risks and mistakes’ said the speaker of the working group focused on information and communication. The concept that transparency is a must in the big data era was transversal among all the groups.
The workshop finished with the participants’ commitment to take the proposals to their workplace and to work on them to start building a brilliant future for health data.