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SItra. Photo: Miikka Pirinen

Published December 3, 2019

Our data, our well-being – who will benefit?

A lot of good things, but also threats are seen in the use of health data. Healthcare can be reformed based on Nordic values, such as trust, responsibility and openness. Co-operation has already begun – follow the movement!
Writer
Author's profile page: Jaana Sinipuro
Project Director, IHAN- Human-driven data economy, Sitra
Jaana Sinipuro is an experienced ICT enthusiast, who leads Sitra’s IHAN project on fair data economy.

A survey published in November (a YouGov poll of 1,027 healthcare professionals, November 2019, Digital Health) suggested that while there may be great benefits to be derived from health data and its analysis, there is also a lack of trust in big multinational tech companies.

The online survey of just over a thousand employees from both the UK’s National Health Service (NHS) and the private healthcare sector showed that 81% of the respondents supported the analysis of anonymised data to enable quicker diagnosis and more effective treatment for patients. Eighty-five per cent said they felt the NHS should receive “a fair share of any financial gains from subsequent medical discoveries”, with as many as 87% agreeing that taxpayers should also benefit from gains resulting from any analysis.

Would this translate into more affordable medications for countries that allow the use and analysis of data? Or does this finally mean conditional compensation for medicines based on their effectiveness?

Yet at the same time, just 12% of the respondents said they would be “comfortable with a multinational company carrying out said analysis”, while only 17% believed that the data would be processed in a confidential manner. At the same time, there was little dispute about the potential benefits of data analysis and data-driven technology for reducing the workload for doctors and nurses and helping patients better manage their conditions. While 73% would recommend that their patients use data-driven technology, just 36% said their patients made use of existing digital services in support of self-care.

This gives rise to three thoughts.

  1. Improving trust provides big companies with an opportunity to conduct business in a new way and redeem their reputation as responsible companies. The pharmaceutical industry in particular has a big reputation to protect, as well as an opportunity to influence how the use of personal data will be received and whether people’s positive attitude towards research is preserved.
  2. There is a greater need for a “data civilisation” that transcends society and individual disciplines and is bold enough to grasp the opportunities provided by data-driven technologies.
  3. In the future, individuals will be the primary care units (points of care) while data linked to the individual will facilitate preventive healthcare, both for the individual and the system. Moreover, people and parties focusing on the individual’s data rights will play an increasingly important role as guardians of the ethics and the transparency of use of personal data.

Sitra is engaged in the Nordic Health 2030 vision-related work to reform future healthcare systems in a more sustainable direction. The shared Nordic values – trust, civilisation, responsibility, openness, creativity and innovation – are a good foundation for the reform of healthcare, with new social contracts, data and business models, and not just people, at its heart.

Follow the movement and explore the Nordic Health 2030 publication or take part in Sitra’s IHAN project that is helping to remove the obstacles to new a fair data economy in a host of ways. The data economy has become increasingly personal – it affects us as individuals and professionals.

#IHAN @2030Nordic

 

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