Service user & staff views on digital remote monitoring for psychosis
Research type
Research Study
Full title
A qualitative study of service user and staff views on digital remote monitoring for unusual distressing experiences (psychosis)
IRAS ID
305509
Contact name
Sandra Bucci
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
300794, NIHR funding reference number; 222875/Z/21/Z, Wellcome funding reference number
Duration of Study in the UK
1 years, 4 months, 1 days
Research summary
Research Summary
Psychosis is a severe mental health problem. Symptoms of psychosis include hallucinations (e.g. hearing voices that others cannot hear) and delusions (unusual, often troubling beliefs). People who experience psychosis often have times when their symptoms are relatively stable. At other times, their symptoms may increase and become much more problematic (a ‘relapse’). Helping people with psychosis to stay well (preventing relapses) is an important and time-consuming challenge for mental health services.
Smartphones and other digital technologies are now widespread. This offers a solution to help tackle the overwhelming demand on services and to enable people with psychosis to access mental health support when they need it most (e.g. when relapsing). Research shows that people with psychosis are often willing to report their symptoms using a smartphone app. Apps like this can alert health professionals when someone needs extra support, but can be burdensome to use long-term. We want to make a system that is less burdensome and is personalised to users’ needs and experiences (a ‘complex digital remote monitoring system’). Recent research shows that information gathered routinely by individuals’ smartphones (e.g. GPS, step count) might help predict relapses of psychosis. We want to use this method in a complex digital remote monitoring system. First, we need to know what people with psychosis and mental health staff think about this idea.
We will interview around sixty adults with psychosis and around forty staff, recruited from UK mental health services (Manchester, Glasgow, Edinburgh, Cardiff, London, Sussex). These one-off, audio-recorded interviews will last up to 60 minutes. The interviewer will ask about participants’ views on complex digital remote monitoring. We will then systematically analyse the interviews. Findings will inform the design of our own complex digital remote monitoring system and future digital tools designed by other researchers. NIHR and Wellcome are funding this study.
Summary of Results
Study Title: A qualitative study of service user and staff views on digital remote monitoring for unusual distressing experiences (psychosis)
Funder: Wellcome Trust
Sponsor: The University of ManchesterParticipants were recruited across six different sites – University of Manchester, Cardiff University, University of Edinburgh, University of Glasgow, University of Sussex, and King’s College London – from nine different NHS organisations – Greater Manchester Mental Health NHS Foundation Trust, Pennine Care NHS Foundation Trust, Aneurin Bevan University Health Board, Cwm Taf Morgannwg University Health Board, Cardiff and Vale University Health Board, NHS Lothian, NHS Greater Glasgow and Clyde, Sussex Partnership NHS Foundation trust, and South London and Maudsley NHS Foundation Trust.
Digital remote monitoring uses technology such as smartphones and wearable devices (e.g. Fitbits) to gather information about people’s activity, experiences and symptoms. In this study, we interviewed 59 staff who work in mental health services, and 58 people who had experienced psychosis, and asked their opinions about using digital remote monitoring to identify when someone with psychosis’ mental health may be getting worse.
We asked what they thought about three things that this digital system might include: i) active symptom monitoring, b) passive sensing, and c) a relapse prediction algorithm created using machine learning. We asked service users how they would feel about sharing information from the digital monitoring system with their care team, and staff how they would feel using digital remote monitoring day-to-day in their work. Clinicians helped to develop and test the interview questions. We recorded the interviews, transcribed them and analysed the information by looking for themes across what staff had said.
Service users
The average age of service user participants was 39 years. Slightly over half of participants were male, a third were from an ethnic minority group and most were single. Roughly half the sample were employed, studying or did voluntary work. Most participants had a primary diagnosis of psychosis or schizophrenia and were currently cared for by a community-based mental health team.People shared different thoughts about each part of the proposed digital platform. For Active Symptom Monitoring (ASM), people were concerned about how much effort it would take but also saw its benefits. They suggested ways to make it easier to use so they could stick with it over time. For passive sensing, privacy was the biggest concern, especially when it came to tracking things like location and the number of calls or texts. Many people thought it would help if users could choose what data is collected or shared. This would make the system feel more acceptable and easier to use. For machine learning, people were focused on how accurate it would be. They felt it was important to have a person involved to review what the system flagged. People who trusted their care team were not as worried about mistakes, like the system incorrectly saying they were relapsing, because they could talk it through with their team. However, those who did not have a good relationship with their care team were more worried about mistakes leading to changes in their care that they did not want, like more medication or being hospitalized.
Staff
From the staff interviews, we developed five themes based on the information: 1) the perceived value of digital remote monitoring; 2) clinicians’ trust in digital remote monitoring (3 subthemes); 3) service user factors (2 subthemes); 4) the technology-service user-clinician interface (2 subthemes); 5) organisational context (2 subthemes). We found that most staff members thought digital remote monitoring could be helpful in identifying when a person’s mental health is getting worse. However, they worried that the information collected by digital remote monitoring might not be accurate enough to do this and worried that collecting lots of information could go against people’s right to privacy. Staff also thought that using digital remote monitoring in their work might cause problems in their relationships with people who use their services and cause more work and responsibility for them. Staff said they would need lots of training and support to use digital remote monitoring in their work. They also said they would need to know more about what they would and would not be expected to do in response to information they have from digital remote monitoring.Both participant groups indicated concern over the accuracy of the data but felt it would be helpful. The findings show the need to work alongside staff, and people with psychosis, to develop digital remote monitoring systems that are acceptable and usable for the people who are going to use them. Findings from this study will be used to help develop a digital remote monitoring system that will be used to identify when people with psychosis’ mental health is getting worse.
REC name
West of Scotland REC 4
REC reference
22/WS/0083
Date of REC Opinion
26 Jul 2022
REC opinion
Further Information Favourable Opinion