What is EPICare?
EPICare is a national digital platform that uses data donated by people with psychosis in England to help improve care, recovery and other outcomes that matter to people with psychosis
What is the EPICare platform?
What is the EPICare clinical dashboard?
The Clinical Dashboard gives your care team real-time insights from the data you share during treatment, helping ensure you receive the right care at the right time.
Only your clinical team can view the dashboard. It helps them track your recovery and know when to offer specific treatments.
By automatically analysing your data, the dashboard highlights when evidence-based interventions that are aligned with NICE standards for psychosis care may be appropriate. You can learn more about these standards on the NICE website
What is the CareLoop EI smartphone app?
The CareLoop EI smartphone app allows people with psychosis to record and monitor their recovery progress during their EIP care in the NHS in England, such as their quality of life, care satisfaction, personal goals, and symptom experience.
These measures have been co-developed with people with lived experience of psychosis, and are basaed on scientifically-validated questionnaires or measures. Our aim is for people to complete these measures at least once every six months.
This data will be shared with your clinical team, so it can be used to help with your care planning.
A de-identified copy of this data will be included in the EPICare core dataset (see below). This will allow researchers to better understand which EIP treatments (such as Cognitive Behavioural Therapy for psychosis, Supported Employment or Clozapine medication) improve recovery from psychosis.
The CareLoop EI smartphone app also includes a free-text mood diary for you to record any other personal feelings, observations or notes you wish to record. This is entirely optional, and your diary is private to you. It will not be shared with your clinical team or researchers. Our co-development revealed that this feature is very important to people with lived experience who helped design the app.
The CareLoop EI smartphone app is available in the App Store (Apple) or Play Store (Android). Speak with your clinical care team* about getting started with this app.
* Only available for people being treated in EIP services in selected NHS Trusts who use the EPICare platform.
What is the core dataset and why do we need one?
The EPICare core dataset is an electronic database that securely stores and analyses data from people with psychosis.
Similar databases for stroke, cancer, and cystic fibrosis have driven major advances in care and outcomes. We believe data from people with psychosis can equally improve recovery and treatment.
EPICare includes information on treatments, recovery outcomes, and basic demographics. By analysing these patterns, we can identify which treatments work best.
We know that it is important for your data to stay yours and that the idea of your data being collected can be scary.
EPICare follows strict guidelines on data collection and storage, abiding by UK law, including the Data Protection Act 2018.
All data donated to the EPICare platform by patients is securely stored. One version sits on a secure NHS server, and can only be accessed by your clinical team to help support your care. A second pseudonymised copy (which has removed any identifying information about individuals) is stored in a Secure Data Environment and can only be accessed by accredited researchers working on approved research.
The EPICare platform has been granted ethical approval by an NHS ethics review board (East Midlands REC - Derby: 24/EM/0151). Patients can use the NHS Data Opt-Out to request that their data is not used for research.
How does a healthcare platform like EPICare improve care?
- Healthcare databases are important to understanding the current issues in treatment and care. However, there isn’t currently a national healthcare dataset for psychosis – this will be the first one.
- Researchers need large datasets with data from a many different people to be able to investigate new ways to improve care for everyone, and to find reasons behind disparities (differences) in treatments between different groups of people. Because of this, healthcare registers can be really useful for researchers.
- We already know that different groups of people experience psychosis care differently. There also may be other challenges which could be improved for people with psychosis. But without a healthcare register it can be difficult to recognise these challenges and address them.