Why does health and care research use information from patients?

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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.

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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.

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How does ieso use my data for research? When you sign up with us, we will collect information about you for two reasons:

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1. To inform your individual care.
2. To learn from your episode of care, to improve our service, to learn about mental health and how to improve recovery.

We want to understand what works in CBT and further improve treatment and recovery rates.

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Much of our research is based on questionnaire scores and responses, in combination with some or all of: number of sessions, age, gender, diagnoses and partial post codes; but we also use machine learning, natural language processing (NLP) and artificial intelligence (AI) on the communications between you and your therapist.

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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. Click here to read more about our data science.

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We have processes in place to safeguard your privacy. We make sure that only essential data is collected and that your directly identifiable information e.g. your name and address is kept separate from the data used for our research.

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(We may anonymise patient data to use for new product development of products intended to help more people get treatment earlier. Although this is not then personal data, you may be interested in reading about an example of this research here.)

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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.

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We have treated over 90,000 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.

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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.

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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.

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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.

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When this happens, we remove directly identifiable information from the data we share with them, so they will not be able to identify anyone personally.

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All partners also sign a legal agreement that any data they have is kept confidential and secure.

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Will my data be made public? Never in a way that could identify you.

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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.

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However, we only report aggregated 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.

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Still have questions? We're very happy to help if you have more questions. To get in touch email: mydataresearch@iesohealth.com.

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Want to discuss how you can restrict our use of your data? You have the choice to opt out of research at ieso.

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If, after we’ve explained to you the importance to the progression of mental health treatments and the ground-breaking discoveries we’re making by responsibly using your data whilst protecting your privacy, you still wish us to stop processing your personal data for planning and research purposes, please email: mydataresearch@iesohealth.com and one of our research team will contact you.

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You can change your mind and opt back in by contacting us at the same email address at any time.

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Any choice you make will not impact your individual care.