By Victoria Hoyle, on 13 August 2018
The MIRRA project is mainly focused on the information rights of care leavers, and on the information responsibilities of the people who create and look after care records. However, we are also interested in issues affecting another group of people who regularly seek access to care records: academic researchers who use them in their work. This work might be in the social sciences, sociology and social work, in economics or in history. It may involve access to large anonymised datasets, to look at trends and patterns in social services, or analysis of the records of individuals (such as case files) to better understand events or practices in context. Recent examples of research using records like this includes Michael Lambert’s work on ‘problem families’ in the North West of England between 1943 and 1974, which drew on 1800 case histories, and Malkiat Thiarai’s research on using statistical analysis of anonymous data to support service planning in Birmingham. Several large scale projects are now underway to make large quantities of social care data available for this kind of research use, such as the Nuffield Family Justice Observatory.
But providing researchers with access to records raises many ethical, moral and practical questions. What rights should researchers have, and what processes should be in place to ensure they access and use the information sensitively? Should the subjects of records – children, young people and care leavers – have a say in how their data is being used? How can records be created and managed in ways that support research without contravening people’s right to private and family life?
At the moment researcher access to care records is covered by the same legislation as access for care leavers themselves: GDPR and the new Data Protection Act 2018. Section 19 of the Act allows for the “processing” of data for “archiving, research and statistical purposes”, so long as:
- Researchers acts in ways that protect the personal data, such as anonymising information or working under strict access controls.
- There is no likelihood that using the data would cause “substantial damage or distress” to the subjects of the data, e.g. care leavers, their families and carers.
- No decisions will be made about individuals based on the research, i.e. about their care.
- The research can’t be done in any other way without weakening it.
The research also needs to have a “lawful basis for processing”, which is usually that “it is necessary for scientific or historical research in the public interest”. If a researcher can convince whoever holds the records that all of these conditions are met then they could legally be given access to significant amounts of information.
Most researchers will also need to convince their University’s Ethics Committee that their work is ethical, a test that is often much stricter than the Data Protection Act. For example, they will need to consider whether it is possible to gain consent from the people the records are about, and justify why if not. They will also need to think about the implications for harm, and how they will protect against it, and provide evidence of the security measures they’re going to put in place. Many universities also require researchers to register with their Data Protection Officer. Meeting all of these criteria can be challenging and time-consuming but neither the legislation or the ethics process is designed with social care records in mind, and may not take into account some of the unique qualities and sensitivities of care records.
Once researchers have permission to proceed they may find that the organisations and institutions that hold care records – such as local authorities, charities and archives – have very different procedures and standards of access. We know from our research already that some refuse completely, while others are relatively open. Some don’t have a good enough understanding or management of their paper records to provide access, and many are using digital systems that make it difficult to export and use more recent data. Although a project might be of public interest or benefit, with stretched budgets it can be difficult to justify the time and expense of working with a researcher. In some cases giving access to records is seen as too great a risk. All of this may limit the potential for learning from records.
We’re interested in understanding more about all of these issues from the researcher’s perspective, so that we can put them in the context of the views of care leavers. How do care leavers feel about their files being used for research? It may be a very upsetting prospect to think about a researcher reading your file, often unredacted, when you haven’t been allowed to see all of it yourself. At the same time it might be positive to think that your experiences are contributing towards improving care in the present, or a better understanding of the care system in the past. We hope to come up with some best practice guidance to help researchers and the people who manage the records navigate the moral and ethical questions better and more consistently. Early next year we will be holding a workshop with researchers to talk about and learn from their experiences, which we will integrate into the project outputs designed with our care experienced research team in 2019. If you are interested in taking part, please get in touch.