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REST: Relapse Evaluation using Smartphone Technology

 

Background

REST (Relapse Evaluation using Smartphone Technology) is a new research study looking at whether or not it is possible for smartphone technology to detect and predict relapse in people suffering from a serious mental illness (SMI).

We are trialling a new smartphone app that could potentially help people with SMI get better help and timely support before they reach a crisis point, while also helping clinicians to provide better care.

Participants are recruited from several NHS sites in England, in a collaboration that includes University College London and Mindstrong Health. This study was reviewed and approved by the London - Dulwich Research Ethics Committee (IRAS study ID: 245218)

The smartphone app being tested is called Discovery and it was developed by Mindstrong Health, an American healthcare innovation company. The app uses digital phenotyping to better understand how human-computer interactions patterns can function as a continuous measure of brain function.

smartphone

The app will passively collect metadata (e.g., swipes, taps, relative location, and timestamps of ingoing/outgoing calls or text messages) for a year. Participants will complete short monthly assessments of memory and cognition via the app, plus a telephone assessment of relapse indicators (e.g., hospitalisation, medication non-compliance). 

Relapse events are also assessed from objective clinical data collected from different NHS sites over the follow-up period. Smartphone metadata will be used to construct digital phenotypes (biomarker patterns) to predict relapse events.           

You can download the app, Discovery by Mindstrong: 

Aims

1. To demonstrate the acceptability of the Discovery app for UK patients treated in a community context services who have the motivation, physical resources and mental capacity to participate in the programme.

2. To demonstrate that data from smartphones can be linked into Electronic Health Records.

3. To develop a better understanding of how the Discovery app can be used to differentiate stable mental states from those which are indicative of imminent relapse.

4. To perform an initial test of the hypothesis that the data we collect could act as an early warning sign for patient relapse in crisis teams or other mental health services.

Partners

Research team: University College London

Chief Investigator: Professor Peter Fonagy (p.fonagy@ucl.ac.uk)

Trial manager: Dr Alisa Anokhina (alisa.anokhina@ucl.ac.uk)

Trial statistician: Professor Pasco Fearon

Research Assistants: Carmen Sinclair, Lidushi Nagularaj, Karolina Urbonaite

Research Associate: Thomas Booker

Partner organisations

Mindstrong health is a healthcare innovation company looking to improve quality mental health care with the help of technology in order to get better clinical outcomes as lower cost. Mindstrong was founded by Dr. Paul Dagum, Dr. Tom Insel and Dr. Rick Klausner and is based in Palo Alto, California.

Service users are being recruited from the following NHS Trusts:

Other Trusts are still being recruited to take part.

    FAQs

    Q: How can I take part?

    If you are interested in taking part, you must be registered with a mental health team at one of our Partner Trusts (see ‘Partners’ tab). Please contact your clinical team and they will be able to refer you to the research team if you meet the criteria.

    In order to take part you must own a smartphone that can support the Discovery by Mindstrong app. You can find it in the Play store (for Android devices) or in the App Store (for iOS/Apple devices). You must be aged 18 to 65 and have a diagnosis of schizophrenia, bipolar disorder, or psychosis. You must have had a mental health crisis (where you were seen at A&E, been hospitalised, or been in touch with a crisis team) in the past 12 weeks.

    how_to_sign_up
    Q: What will happen if I decide to take part?

    If your clinical team refers you to the study, we will explain in detail what will happen during the study and give you the opportunity to ask questions before you decide to commit.

    If you are already a participant in the study and would like another copy of the information sheet or consent form, you can find it in the Portal.

    If you decide to take part, you will be asked to install the Discovery by Mindstrong app on your phone and keep it running in the background for 12 months. Once a month the app will prompt you to complete some tasks – these look like word or memory games or quick questionnaires, and take about 10 minutes total. Someone on the research team will also call you once a month to ask you about your mental health and general well-being – this should take another 10 minutes once a month.

    Q: Will I get paid to take part?

    Unfortunately no, we are not able to offer payment to participants.

    Q: What does the app actually record?

    The app records how you use your phone: swipes, taps, if and when you make phone calls or send messages, etc. This information is converted into strings of numbers and letters that looks something like this:

    0000000 3e ea 58 f2 0c 36 52 dd e5 1b ec 6f a2 35 41 01

    0000010 3f bb 65 a1 19 b5 a5 1c bb 01 50 22 82 29 ff 6d

    0000020 d7 66 1e 0f c8 04 f9 ad b4 54 20 3c 9e 3c 38 1d

    0000030 e6 4c d6 4b af 46 61 41 d6 64 21 1e 61 4f e5 80

    0000040 e9 22 fa d9 22 10 68 0d 48 23 97 5b 19 9b 04 db

    0000050 cf 78 e6 12 fb a2 c1 14 ed 7d 1d 47 4f 84 94 d4

    The app doesn’t record the content of what you do: it doesn’t read your messages or emails, it doesn’t record your phone calls or your internet history or anything else similar.

    Privacy notice

    UCL is the sponsor for this study based in the United Kingdom. We will be using information from participants, their medical records and their smartphones to carry out this study and UCL will act as the data controller for this study. This means that we are responsible for looking after all the gathered information and using it properly in accordance with the General Data Protection Regulation (GDPR) (EU) 2016/679.

    This study was reviewed and given approval by the Dulwich Research Ethics Committee, which is part of the NHS Health Research Authority in London.

    You can find out more about how we use your information at https://www.ucl.ac.uk/legal-services/data-protection-overview

    You can also find out more about Mindstrong’s Discovery app here https://mindstronghealth.com/privacy/

    Resources

    reading_material
    Contact

    Contact the trial coordinator directly: alisa.anokhina@ucl.ac.uk

    Tweet the Psychoanalysis unit: @UCL_PSA

    Participant/Clinician Portal

    Relevant documents will be available for download here in due course.

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