Why does health and care research use information from patients?
Researchers use data to establish if one treatment method is better or worse than another, or to see whether there are links between recovery rates, and treatment methods and patients’ personal circumstances. Different people can respond to therapy in different ways so by collecting information from lots of people, researchers can work out ways to get more people better. How does Ieso use my data for research?
When you sign up with us, we will collect information about you for two reasons:
1) The NHS requires that we collect information about our patient care so that they can monitor the quality of the service we provide. This information includes how well patients respond to treatment along with some personal information including statistics around gender, age and ethnicity. (see IAPT Minimum Data Set)
2) To conduct research to understand what works in CBT and further improve treatment. Collecting information from the conversations that happen between patients and therapists help us to build a greater understanding of the causes of mental illness and what makes treatment work. Learn about our data science. We have processes in place to safeguard your privacy. We make sure that only essential data is collected and that your identifiable information e.g. your name and address is kept separate from the data used for our research.
How does Ieso use my communications with a therapist?
Being able to look at and analyse conversations between patients and therapists provides us with a unique opportunity to learn how therapy works and improve it. We have treated over 30,000 patients and we use the data from this for research. We are training computer algorithms to find patterns in the therapy process – so we can see what aspects of therapy are most effective. An example of our research using this approach can be seen here: Ewbank et al., 2019.
Will a researcher read any of my conversations with my therapist?
They might do, very occasionally, but never in connection with your name, location or other clinical details.
The reason why a research scientist might need to read through a therapy session, is that it is sometimes necessary for a small number of them to be manually “coded”. For example, we may need to tag a transcript to mark each time a therapist sets homework or begins a specific therapy activity.
Will my data be shared outside Ieso in a research context?
Sometimes, but with strict safeguards. So that we can conduct research to improve treatment, we sometimes partner with researchers outside of Ieso, e.g. university research groups. When this happens, we remove identifiable information (including any names and locations) from the data we share with them, so they will not be able to identify anyone personally. All partners also sign a legal agreement that any data they have is kept confidential and secure.
Will my data be made public?
Never in a way that could identify you. In order to increase the number of people who recover with online CBT, it is important to share our findings with the research community. We publish our findings in peer reviewed journals and present them at academic conferences.
However, we only report statistics, patterns and our conclusions – we don’t include details about individuals’ treatment or condition. You can see a list of all our published research on our data science page.
Still have questions?
We're very happy to help if you have more questions. To get in touch email email@example.com.