The future of data donation -DDAC’s inaugural workshop

Written By Louise Barnard

On the 11th of July, 2022 members of DDAC assembled at N/Lab at the University of Nottingham for DDAC’s inaugural workshop. For many, this was the first time meeting in person and the afternoon got off to a great start with networking and discussions over lunch.

Attendees at the workshop came away from the session with a much better understanding of the current landscape for data donation through the sharing of personal research experiences, with talks being given by the following members:

  • CLOCS / Cancer (Dr James Flanagan and Dr Yas Hirst ) - see selected slides here

  • Food Insecurity (Dr Georgiana Nica-Avram and Dr John Harvey) 

  • Respiratory Disease (Elizbeth Dolan and Dr Gavin Long)

  • Biobank CSS (Dr Claire Steves).

  • Banking / Finance (Prof Neil Stewart) view paper here.

  • Nutrition & Transforming Food (Dr Michelle Morris) see selected slides here.

From the group discussion, it was clear that obtaining and using digital footprint data for research involves a number of different stakeholders, each of which has different priorities, time commitments, and processes. Navigating this complex landscape is challenging. There was a clear consensus from the members that there was a need for the advisory council to publish guidelines around the process of data donation, and for DDAC to continue to build its support network for those working in research.

Along with researchers, key stakeholders were identified as businesses, social enterprises, public bodies, patients and individuals/participants. Building working groups designed to support these key stakeholders and interest groups was another key role it was agreed DDAC could fulfill.  

Sharing success stories and positive research outcomes that have used digital footprint data was also acknowledged as an important step towards gaining a wider awareness and acceptance of the benefits to society that data donation can afford. DDAC already has a directory of research papers that have benefited from digital footprint data, but it was suggested that a blog post series could shine a light on the successes - so watch this space. 

The afternoon was rounded off with small group writing sessions. The teams were tasked with creating the outlines of a positioning paper for DDAC which will be completed outside of the workshop.

This workshop marked the first in a series of working sessions where the DDAC core committee will come together to progress DDAC’s agenda towards its goal of simplifying the process of donating data and providing guidelines for its safe and ethical usage. The DDAC committee will meet again on the 14th of September 2022 in London. If you have any questions or comments or would like to join the DDAC network please do get in touch at enquiries.ddac@gmail.com.

Louise Barnard