Service User Research Enterprise (SURE) projects
The Service User Research Enterprise team carry out a number of key projects. Below you will find details of current and past programmes:
Service User’s and Carers’ Views on Stratified Medicine
This project originated when a group of people with a diagnosis of psychosis stated that the most important outcome for them of any intervention was reduction in neurlolepetic side effects. As current measures are dated, it was decided to compile a new one. We used the SURE method for developing Patient-Generated Patient Reported Outcome Measures (PG- PROMs) which involves focus groups and expert panels of people who have experienced what is being assessed and where the researchers also had that experience. This is to enable a levelling of the power relationships in research. Currently, we have a measure that is being psychometrically tested. Ultimately we will have an up to date measure of neuroleptic side effects that matter to service users. In addition, through a method called a Discrete Choice Experiment, we will be able to advise drug developers on what are the most important side-effects to avoid from the service user’s perspective.
Contact: Professor Til Wykes
Online Research Learning for Service Users and Service User Groups
The idea behind stratified medicine is that pharmacological treatments can be tailored to a person or group’s biological make up. This is most advanced in cancer treatment. In psychiatry there is now an argument about the fact that all current anti-psychotic drugs target one bran pathway – the dopamine system. It is argued that some people should have drugs that target another pathway – the glutamate system. We ran focus groups with service users and carers to see what they thought of this and whether they would be willing, or thought their relative would be willing, to undergo tests of various levels of intrusiveness to ascertain which drug would suit them best. There were some surprises about the tests in the focus groups as well as people saying they did not think drugs were the answer anyway. However, participants displayed a level of altruism in saying they would be prepared to enter trials of this approach even when the tests were very intrusive.
Contact: Jennifer Walke.
SURE have created an online resource so that service users and their organisations can learn research skills and be enabled to do their own research. It draws on teaching resources that SURE members of staff have used in the past and was created in conjunction with Maudsley Learning and the Ortus Centre. There is a parallel course in research skills for front-line staff at the Maudsley NHS Foundation Trust.
For more information, please contact Jennifer Walke.
PERCEIVE is a research project designed to evaluate innovative hospital-based mental health care interventions. Throughout the programme there will be an emphasis on service user views and experiences. The aims are twofold: to develop new methods of research and new measures that capture the acceptability and experience of inpatient care from the perspective of service users and in-patient staff, and to evaluate two health and social care interventions to determine if they are effective, cost-effective and acceptable to service users and in-patient staff.
Problems in inpatient care have been identified not only in surveys and policy documents but also in reports from service users. Solutions that have been suggested include increasing therapeutic activities, supporting staff skill development and increasing access to psychological support on wards. This research seeks to improve the experiences of service users and staff through the introduction and evalutation of the above interventions.
PERCEIVE has four major components:
- Work Package 1 is the development of a measure of service user and staff perceptions of in-patient wards.
- Work Package 2 is the development of an economic measure of inpatient services.
- Work Package 3 will evaluate, through a randomised control trial, the effects of increasing therapeutic activities on wards.
- Work Package 4 will evaluate two triage models of care.
Service User and Staff Measures
SURE's primary involvement was to create measures of the experience of living and working in acute wards - one for service users and one for nurses. We held focus groups with service users who had been in hospital in the previous two years and nurses currently working in acute wards. The service user groups were facilitated by service user researchers and the nurse focus group by nurse researchers. From these we devised two measures: VOICE for service users and VOTE for nurses. These measures were then used as the primary outcomes for the interventions. VOICE was included in the NICE evidence update as an exemplar of a user-generated assessment of the patient experience. The research is based across the London boroughs of Southwark, Lambeth, Lewisham and Croydon. The research will be completed in 2012.
The chief investigator for PERCEIVE is Professor Til Wykes and the lead investigator for SURE’s work package 1 is Dr Diana Rose. The researchers for SURE's work package 1 are Jo Evans (service user researcher) and Caroline Laker (nurse researcher).
The project is funded by the National Institute for Health Research (NIHR).
The overall aim of this project is to examine how managers have responded to user involvement activities in mental health and to identify how they facilitate or impede effective patient and public involvement. This is a novel perspective as there is great paucity of literature on what the impacts of user involvement activities have been, especially in terms of the responses of key decision makers. The study also looked at the changing practices of user involvement in mental health where more “conventional” models may be giving way to an increased focus on individual involvement, for example, in the area of personalisation.
The overall research objective is linked with a number of research enquiries, such as, gaining an understanding of the impacts of service user involvement in mental health in terms of service development, commissioning and personal benefit to users. The study aims to examine how managers and other key decision makers respond when mental health service users ask for changes in services or policies. The research also looks at the underlying assumptions, beliefs and values held by senior managers about the benefits and drawbacks of user involvement in mental health and how they individually and collectively respond to, facilitate or impede user /patient involvement.
The research design is a mixed methods one. First, we conducted a largely quantitative survey with service users and frontline staff, including social workers and community psychiatric nurses. Semi Structured interviews were also be carried out with key informants including commissioners, clinical senior managers, social care senior managers and chief executives. We conducted an ethnography of six User Led Organisations (ULOs) as they pursued goals with key decision makers trying to bring about service changes desired by them. We also studied user governors in NHS Foundation Trusts. Lastly, we conducted focus groups with service users in receipt of individual budgets. From the survey, we found that the perceived impact of user involvement was greater than had previously been thought. However, the ethnographies showed a more complex picture with many barriers to the achievement of goals by ULOs. This was true when we considered the role of user governors as well. As far as personal budgets in mental health is concerned, the project struggled to find service users in receipt of these at all.
The overarching aim of the study was to contribute to the improvement of mental health service delivery by maximising the potential for user input to service user design, planning and evaluation. Improvements in service delivery should enhance user experience and outcomes. The three key audiences for the results of from this work are thus mental health service managers, front line workers and service users who are active or would like to be active in user involvement processes.
Who is involved?
The project is being carried out by the Health Service and Population Research Department (SURE) The principal investigator is Professor Diana Rose, with the assistance of researcher Edward Omeni. The report on the study can be found at the National Institute for Health Research's website.