A mental health clinical trials pilot website
2006 Conference
This website was commissioned by the National Institute for Mental Health in England. The project team from TwoCan Associates included a service user, two carers and two researchers. The team researched and reviewed the literature and interviewed service users, carers and researchers to find out what they wanted the site to cover .
The site includes information for service users and carers about taking part in a trial, information for researchers about involving service users and carers, a pilot register of publicly funded trials and a glossary.
The views of service users and carers on the site were that the information was very clear, well written and informative, well explained and logical, easy to understand but that more personal stories were needed. The researchers liked the information aimed specifically at them.
Recommendations made at a stakeholders’ seminar were that the design of the site should be improved to make it more user-friendly e.g. by improving the layout and format, simplifying access and navigation and including more quotes and case studies. It will also be important to develop criteria about which trials should be included on the register and to work with researchers who submit information about their trials as to how to deal with queries from users and publication of results.
Involving a carer/service user prompted local NHS Mental Health Authority review of Clinical Trials Guidelines.
The website is at www.csip.org.uk/supporting-delivery/research-and-development/-mental-health-clinical-trials.html.
Authors
Hanley ~ Bec
Bec Hanley, Co-director, TwoCan Associates. Bec Hanley is interested in how to help researchers summarise their research in plain English. She is working on a project looking at plain English summaries for NIHR research grant applications. She has reviewed summaries for the Research for Patient Benefit Programme and written them for the Medical Research Council.
View all articles by this authorNettle ~ Mary
Mental Health User ConsultantlnbrMary Nettle is a Mental Health User Consultant and has a particular interest in user led research. Among many other things she is chair of the European Network of Users (ex) Users and Survivors of Psychiatry.
View all articles by this authorStaley ~ Kristina
Kristina Staley is Co-Director of TwoCan Associates. TwoCan Associates help voluntary and statutory organisations to involve patients, carers and the public in their work. They carry out research projects and evaluations, develop policy and guidance and also provide training and support.
View all articles by this authorTaylor ~ Mary
Mary Taylor is a carer, a Rethink Trustee and Coordinator of the Suffolk Rethink Group, which she represents on the Suffolk West for Mental Health Voluntary and Statutory Partnership. She is a member of a working group that wrote a booklet on "Confidentiality and Information Sharing", for users, carers and professionals across Suffolk.
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