Trust, citizen empowerment and the role of digital literacy on health data sharing

4th November 2020

A solid investment in digital literacy, increasing information on data sharing and promoting solutions that empower citizens in the sharing of their data were some of the conclusions from the  workshop “Trust, citizen empowerment and the role of digital literacy on health data sharing” that the ECHAlliance and SPMS organized, under the DigitalHealthEurope project  at the Health Data Forum Global Hybrid Summit on 28 October .

The panelists representing the project partners and stakeholders, as well as different professional backgrounds from governmental agency to expert organisations,  and technology clusters  to European-wide non-for profits joined the discussion on the main outcomes of the “Recommendations and guidelines on citizen-controlled health data sharing governance “ and the “White paper on better citizen access & control of data” developed within the project recently. The Recommendations are based on the desk study, survey, and interviews with the experts from different initiatives that promote citizen-centred health data management.

After the presentations performed by ECHAlliance and SPMS, the panel had a warm and fruitful discussion of some of the main recommendations:                           

  1. Make sure people know who uses their data and for what purpose.
  2. Provide the citizens with the mechanisms to control the use of their data, and exercise their rights.
  3. For this, digital education is necessary – namely to ensure the double role of citizens and healthcare professionals as drivers for change.
  4. Explore and promote person-centric approaches and solutions for data sharing.
  5. Develop a new European-wide or global digital contract.

Three main themes came out of the discussions, summarized as follows:

  1. DIGITAL LITERACY

This is seen undoubtedly and unanimously as an absolute prerequisite for the digital transformation in the access and citizen’s control over their health data. It should be seen as a public investment. Furthermore, given the limited resources, the healthcare sector should look outside of its own core and promote digital literacy in collaboration with other institutions e.g. municipalities or schools.

  1. HEALTH DATA MANAGEMENT AND INCENTIVES FOR DATA ACCESS

This fascinating part of the debate started from exploring the dichotomy between ownership and control of the data. The former implies that when the data is being shared, the ownership is transferred to the other entity, and the citizen loses the rights to this data. The latter implies that the citizen controls the data about them and can grant the full or limited access to their data. The incentives, monetary or other, are valid for the two models. The experts agree the debate should be about control, not ownership.

  1. NEED TO DEFINE OR RE-DEFINE WHAT “CITIZEN-CENTRED” MEANS

Does “citizen-centred” mean giving most decision power to the citizens or benefiting the largest number of citizens as possible? Also, what does it mean from the perspective of the citizens themselves: personal control or personal benefit?

The panelists agreed that we need to ensure that the citizens have the best understanding possible on what kind of data they share, what they mean, what kind of benefits they can get or are possibly entitled to, and what kind of risks sharing their data brings if done in an uncontrolled way. Only this way, people can be empowered to share their data, unlocking their potential and benefiting themselves and society in a secure and ethical way.

The discussion carried out by the DigitalHealthEurope project will continue at the Digital Health Society Summit in November and MyData Online 2020 Conference in December 2020.

Full report from the session is here

Watch the recording video of the workshop below:

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