Report from the MyData 2017 Conference
ADRC-NI recently presented our work on consent in data linkage for research, as well as our public engagement work, at the MyData 2017 Conference in Tallinn, Estonia and Helsinki, Finland.
In attendance were a wide variety of representatives from academia, business, NGOS, and government, from Europe, South Africa and North America. The diverse perspectives made for a wide-ranging and thought-provoking discussion on issues around consent – when is consent needed, not just legally but ethically? How do make sure consent ‘works’ both in a technological but also an ethical context? How do we speak to publics about the purpose for which their data will be used, spreading awareness while also developing more efficient services?
As part of the Consent track during the Helsinki portion of the workshop, we provided some context for consent in data linkage research, discussing the Northern Ireland Life Times (NILT) research into ‘Public attitudes to data sharing in Northern Ireland’ and our work with the Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) study on their participants’ views of consent for linking survey and administrative data.
We discovered that while places like Estonia, for example, have operationalized their administrative data held by the government for quite some time, with 99% of their public services being digitized and manageable online, talking to publics about the purpose and use of their data is something they haven’t considered. This may be changing with the introduction of the GDPR, a topic that featured heavily within discussions at MyData 2017.
The GDPR will require countries that had been using data to run services without consent to turn around and speak to the public for the first time about what they are doing, and bring the public opinion along with them. Thus they were very interested in the fact that we are largely doing this work in tandem – speaking to publics about data use while simultaneously exploring how publics’ data can be maximized into better knowledge, better policy, and better services.
We also presented our use of public engagement with voluntary, community and social enterprise (VCSE) sector groups as an answer to the question, “how do we support public empowerment and accountability in the use of public data whilst simultaneously maintaining safety and security for sensitive data?” Our answer is that by engaging VCSE groups with in-depth working knowledge of specific socioeconomic issues and of the communities they affect, we can both develop better research and better research impact, but work towards the ideal of the public knowing about and understanding the purpose for which their data is being used, as well as having an impact on how it is used for research purposes.
This was also very well-received, and prompted several people who work with Nordic and Baltic governments who now have to consider public views on data use (as mentioned above) to consider our model as a starting point for engaging.
Overall it was an engaging and thought-provoking few days, which showed that the ADRC-NI in particular and ADRN in general are well-placed as leaders in the engagement and consent fields for data research.
Elizabeth Nelson, Public Engagement and Communications Officer, and Frances Burns, Project Manager, ADRC-NI