The ‘My Data’ Project

The Challenge

Administrative data is information which is collected whenever someone visits the doctor, hospital or collects a prescription, for example. These data are collected mainly for services themselves, for example to see how many patients have been seen each month, and what pathways through services people take. Data in Scotland are mostly unconsented – this means that individual people do not have to give their consent or permission for these data to be used by services and researchers. Data can also be useful for researchers who may want to join together data to see whether interventions are improving outcomes, or where gaps in services might be.

There has been research previously which has looked at what people in the general population think about their data being used in research. Research to date suggests that, across countries, the general public are mostly supportive of sharing of administrative data for research (Aitken et al., 2016, Paprica et al., 2019). 

Up until now, though, no-one has looked at what people who use drugs, or are in recovery journey from using drugs, think about researchers using their data for research purposes. This is important because we have good reason to think that people who use drugs might have different views about sharing their data. This is because:

• People who use drugs are hugely stigmatised as a group, so there may be a lack of trust around sharing and using these data;
• Some of these data are particularly sensitive: alongside data about substance use, this group of people have often experienced difficulties in life which may be captured in these data;
• People who use drugs may be different demographically (for example, in terms of educational background) from those who have previously been involved in this type of research;
• Researchers have not always been good at engaging people who use drugs in this sort of research using big data, so we know less about the views of this group.

Our Study

The School of Health Sciences, University of Dundee were funded by Research Data Scotland (RDS) to explore the views of using administrative data (such as hospital records, drug and alcohol service data, social work data) for research among people who used substances. Researchers from the School of Health Sciences worked in partnership on this project with Restoration Fife, a drug and alcohol recovery community based in Fife. 

The project had two aims:

1. To explore the views of people who use drugs on how we use their administrative data in research;
2. To share this information with the wider community. 

What we did

Researchers used focus group discussions with people who use drugs, accompanied by a conference illustrator, who live-illustrated our discussions. Based on these discussions, researchers then worked with a smaller group of people to co-produce a short stop-motion film to inform others who use substances about the use of their data in research.

What we found

There were a wide range of views around the use of administrative data for research purposes. People in the groups told the researchers that they knew little about how their data were being used in research and how data were made available for researchers. The participants were surprised to learn that administrative data, such as drug use and GP records, could be shared without their consent, and some people disagreed with this. One view was that people should be asked for their consent to share data. However, it was also noted that this might result in people not being included in the data. This could result in lots of missing data, making it less useful for research. Whilst there was a view that people were happy to share all data, for others, there were concerns about data sharing. This was particularly around data relating to drug and alcohol services, or their children. 

Outputs

• My data: an animated film, co-produced with people who use drugs
• The 'My Data' project: exploring perceptions of the use of data in research
• Watch: Public Engagement Fund showcase