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A Mental Health Clinical Trials pilot website
The aim of this project was to develop a website about mental health clinical trials in the UK for mental health service users, their families, friends and carers as well as the general public, in order to: 1. improve knowledge and communication and to help people to make informed choices about whether to join a clinical trial 2. contribute to a better understanding of mental health research by the public, and addressing public mistrust 3. give information about current research and time scales etc., thereby reaching potential participants 4. improve partnership working between researchers and service users and carers
Author: U Hla Htay
Email: uhlahtay@hotmail.com
A web based decision support system for mental health risk screening.
Interviews and computer based activities to elicit expertise about how multidisciplinary mental-health practitioners make mental-health risk assessments.
Author: Christopher Buckingham - Aston University Computer Science
Tel: 0121 204 3450. Email: c.d.buckingham@aston.ac.uk
Website: www.galassify.org
Design and evaluation of a web based information service for people with dementia.
Five men with a diagnosis of dementia attending an early-stage support group agreed to assist in the study by trying out the two web sites and advising the researcher regarding their suitability. The researcher worked with each individual to look at the two sites and recorded how they managed to negotiate the pages as well as interviewing them to obtain their views.
Author: Linda Clare - Clinical Health Psychology University College London
Tel: 020 7679 1844. Email: l.clare@ucl.ac.uk
Evaluation of There4me.com
Evaluation of a new service, primarily analysing data accessed and/or obtained online. This raised different issues for evaluation methodology.
Author: Julia Waldman - Division of Social Work Studies
Tel: 02380 592523. Email: jwaldman@westberks.gov.uk
Website: http://www.sws.soton.ac.uk/t4mstudy
Inclusive internet technologies for people with communication impairment.
Qualitative interviews about internet at beginning and end of project, observation of internet use and focus group discussion. All with working group of ten people with aphasia. Advice and opinion from advisory group ( including some aphasic people).
Author: Becky Eves - Connect - The Communication Disability Network
Tel: 020 7367 0851. Email: beckyeves@ukconnect.org or susiepparr@btinternet.com
Patient Impact Assessment Project
Literature review of possible methods for Patient Impact Assessment. Consensus development workshop - initial method. Workshop participant feedback on written up method. Further feedback on proposed method via website at Birmingham University.
Author: Sally Crowe - Birmingham University
Tel: 01865 821343. Email: sally@crowe-associates.co.uk
PRIME Partnership for Research in ME and Chronic Fatigue Syndrome
PRIME stands for Partnership for Research in Myalgic Encephalopathy (ME) and Chronic Fatigue Syndrome (CFS), it is a collaborative endeavour that brings together specialists in research (RCN Institute), knowledge management (Minervation), Patient and Public Involvement (Crowe Associates) and ME/ Chronic Fatigue Syndrome (a group of charities and support groups), and researchers. This project has developed a new way of viewing and accessing patient experiences, in this case in ME/Chronic Fatigue Syndrome, a disabling and devastating illness. Because there is no agreed definition of the disease and no agreed diagnostic and treatment approaches it has been vitally important to capture and make accessible the experiences of people who live with the disease and who care for them. We hope that the body of patient evidence that is being collated will provide a source of useful data to researchers and clinicians who can interrogate it, and people with ME/CFS and their carers who can read about similar experiences and eventually contribute their experiences online. Data was collected by a series of 40 interviews with people with ME/CFS, from the literature and via research workshops.
Author: Sally Crowe - Crowe Associates
Tel: 01844216929. Email: sally@crowe-associates.co.uk
Website: http://www.prime-cfs.org
Sharing Value: Developing a web site and print directory of user commended support services for disabled children and their families.
Consultation groups of parents, children and practitioners (9 groups in total) . Were consulted at key stages throughout the project. Development of 3 postal questionnaires, one each for parents, children and siblings, sent to 15,000 families (approx) from the Family Fund Trust (FFT) database, asking for nominated services. Within the directory, some examples of services are described in greater depth. Families helped to shore-list and FFT Visitors visited these services.
Author: Wendy Mitchell - Social Policy Research Unit, University of York
Tel: 01904 433608. Email: wam1@york.ac.uk
Website: http://www.york.ac.uk/inst/spru/
