Using case file data in research

Vicki Hollis offers advice on extracting and using  the information from service user case files in research projects

Boy writing in a bookWhen someone uses one of our services, we create a case file to keep a record of their relevant information and the work we do with them, as many other organisations do.

This includes details relating to their service referral, safeguarding information, assessment and the support they have received.

For researchers, case files provide an opportunity to use data that has been collected in a more natural way, rather than being gathered solely for research purposes. The data in case files can be extremely valuable as it gives an insight into the needs of the people using our services – this can help us to develop our programmes and make sure we are giving them the appropriate support.

I’m going to share some tips on gathering and analysing this kind of information. I’ll also cover the ethical and methodological factors that should always be considered when using confidential case file data in research.

The case file

Once created, a person’s case file is held securely, usually electronically and is only accessible by the practitioners who are working directly with that person.

With permission, the data from case files may be pooled to give an overview, or in-depth exploration, of an issue. It may be used as part of a service evaluation to provide more information and context about the people using the service. Or it may be used to provide some in-depth case studies.

For example, we recently completed some research exploring whether the children and young people from our Turn the Page service, which supports children who display harmful sexual behaviour (HSB), were displaying HSB online as well as offline. We used service user case files for this research.

We looked at the range of HSB being displayed online by the children, as well as the characteristics of the children who were displaying this behaviour. The data gathered from case files helped us carry out the largest UK study to date exploring this issue.

Tips for using case files for research projects

When using case file data in research, a number of issues need to be considered.

Consider ethical issues before you start
You must get ethical approval from the relevant research ethics board before carrying out any research. Your organisation may have its own research ethics committee, but you may need to apply to an external organisation for approval.

You’ll need the service user’s permission to use their data for research purposes. In our research, service users signed a consent form agreeing to their data being held by the NSPCC and used anonymously for research purposes.

It’s best to gain consent when a person starts using the service. You can do this after the service has finished, but consider the implications: the service user may feel uncomfortable about being contacted after disengaging with the service, and it may be difficult to get hold of them.

Before using any case file data, you must make all the information anonymous.

Collecting data and deciding how to use it
Information in case files is collected and recorded in various ways:

  • referral forms often provide structured information about the service user and why they were referred to the service
  • a closing report may provide a free-text narrative that gives additional information about the progress the service user has made during the programme and what helped them to do this
  • you may also be able to collect information about the service itself, such as how many sessions the service user attended.

Consider how the data you need is likely to have been recorded and where in the case file it may be stored. This focuses your research, pinpoints areas of missing information and helps you timetable the data collection process.

There can be hundreds of pages within a case file and finding the right information is time consuming. Knowing about any templates that practitioners use when recording case information, such as a reporting framework, can be helpful for identifying available data in advance.

Develop a data extraction form
Devise a data extraction form. This is a template to help extract and record the data you need from each case file. Do this before you start collecting data, to help you think about the type of information needed.

It’s also helpful to structure this data extraction form so it matches the ways the case information is recorded in practice. This increases the likelihood of collecting the information you need.

Pilot your data extraction form on a small number of cases to see if it works and to identify common areas of missing information. If a substantial amount of the information you need is missing, re-think your research question or consider alternative ways to collect your data.

When extracting data, record a unique identification number on the form instead of the service user’s name to protect their identity.

Challenges of using case file information

Using case file data in research presents challenges, mainly because it has not been collected for research purposes.

1. You might find that you have a lot of missing data for your research, particularly if there’s no structure to how information is initially recorded.

Consider why information is missing. This could mean that the issues you’re looking for haven’t been asked about – or just that they weren’t written down. If there’s no mention of whether a young person has accessed pornography, for example, this could be because they haven’t accessed any pornographic material - or that the practitioner didn’t ask about it. Alternatively, the practitioner may have asked about it, but they didn’t think it was important enough to record.

Often, it’s better to report the information as “missing” than to make a judgement about the meaning of missing data.

Too much missing data can threaten the reliability of your findings and have an impact on any statistical analysis you plan to carry out. In our research, we didn’t report on any variable where data was missing for more than half the cases.

Reporting on the extent of missing data within your research provides useful information for the reader and helps them assess the reliability of your findings.

2. Bias can also be a challenge when using information from case files.

The data will be unintentionally biased by the interpretation and assumptions of the practitioner who creates the case notes.

It is further biased by the interpretation of the researcher who is searching for and recording the information from the case file.

That’s why it’s so important to outline your definitions before you start the data extraction process, to encourage consistency: make it clear how you would define a “mental health difficulty”, for example.

It’s good practice to ask a second reviewer to extract data from the case files at the piloting stage. This helps identify any ambiguity and reduces researcher bias throughout the data extraction process.

A unique challenge

Service user case files can provide insightful and useful information for research and service evaluation.

However, the data presents unique challenges which researchers should be aware of when planning, carrying out and reporting on research.

For a practical example of how we’ve carried out research using data from case files, look at our research exploring technology-assisted harmful sexual behaviour.

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