Your Data
How we use your data
The EPICare platform will use data collected as part of your routine care in NHS Early Intervention for Psychosis (EIP) services to:
- Improve the types of treatment that people with psychosis are offered
- Reduce gaps in evidence-based treatments that are not being offered fairly to all people
- Discover which treatments are most effective in reducing symptoms and improving social recovery for people with psychosis
- Identify national variation in need for psychosis treatment to plan services more accurately
Your data joins EPICare, the NHS’s first England-wide psychosis registry, alongside data from other EIP patients. A pseudonymised (linked to a unique ID, not your personal details) set of your data is securely stored on a system called a Secure Data Environment,. Only your care team and approved academic researchers can access this data. We use your data to give your clinical team timely insights to guide care. It also helps identify inequalities in access to gold-standard EIP treatment. Finally, it informs how effective treatments are for symptoms, quality of life, and other real-world outcomes.
How your data improves care
Healthcare registries show how different treatments support recovery, helping improve care. Databases for conditions like stroke and cancer have already driven major, even life-saving, advances in care and policy.
The EPICare platform aims to transform care and outcomes for people living with psychosis by making better use of data that patients already provide to their Early Intervention in Psychosis team during their care. The data that we collect has been co-designed with people with lived experience of psychosis, their carers, clinicians and service providers.
A strength of large databases like EPICare is the inclusion of data from many individuals who are experiencing psychosis for the first time across England. This ensures the data we use includes people from all backgrounds so that the information and findings it can produce will benefit everyone with psychosis.
Data you provide to us
EPICare will collect two types of information during your routine care in EIP services:
Patient Recovery and Outcome Measures (PROMs)
Outcome measures help your clinical team build up a picture about your recovery progress. We will collect outcome measures about your quality of life, symptoms, memory, and satisfaction with treatment and your recovery progress. By combining this data with the treatments you receive, it can help build up a picture about which treatments are effective in helping people recover from psychosis in England.
You may be asked by your clinical team to use the CareLoop EI App to collect some of these measures.
Routine data about your treatments and demographic characteristics
During your care, your clinical team will record the treatments you are offered, and some of your basic demographic characteristics like your age, gender, ethnicity or whether you are studying or have a job.
By providing this data, you will help build a national picture of which treatments are most effective in helping people experiencing psychosis to recover from their condition. This data is pseudonymised (which means your identifying details are removed) and stored in an NHS-approved Secure Data Environment.
How will my data be stored?
Introducing the CareLoop EI Smartphone app
Your clinical care team may ask you to use a smartphone app called CareLoop EI. The app will help you to complete questionnaires and tasks to better understand your experiences of psychosis. If you are unable or prefer not to download the CareLoop EI app, you can still complete your PROMs during your usual appointments with your care team.
Can I opt out of my data being collected?
All NHS patients can opt-out from their data being used for research purposes. We will no longer process your data in the EPICare core dataset if you have opted-out from the NHS National Data Opt-Out. This does not affect the data that your clinical team use to help guide your care that is displayed on the EPICare Dashboard.
You can find out more about national data opt-out here.