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For the people, by the people, with the people
The paper focuses on the journey of developing a participatory model for health and medical research. It is based on the experiences of the School of Population Health at The University of Western Australia and the Telethon Institute for Child Health Research in collaborating with the Health Consumers’ Council (WA) Inc, an independent community-based organisation, …
Carers involved in research
"I had to give up work to care, this makes me feel l have something to offer, it keeps my brain active" This initiative, the first in Northumberland, has not paid lip-service to carer involvement but has changed the relationship between the statutory organisation and the people it supports for the better in the spirit …
Risks and benefits of medicines: Who do you trust?
MHRA, in a previous incarnation, was somewhat secretive. That has changed. The views of patients and the public are now a priority. MHRA wants to hear their views and engage in discussion with them. It commissioned MORI (now Ipsos MORI) to research the views of both the public and healthcare professionals about risk, regulation and …
The National Prevention Research Initiative – a study of successful lay involvement in strategic funding of research
The National Prevention Research Initiative is a partnership of eleven major research funders brought together by the National Cancer Research Institute. The objective is to develop cost effective interventions which encourage healthy behaviour or which discourage unhealthy behaviours. The focus is on smoking, obesity, nutrition and exercise. The initial funding call in 2005 resulted in …
Research ethics: what do you think?
There is a lot written about research ethics from a professional standpoint, that is asking doctors and professional researchers their views. While this is interesting, most people who take part in research are not doctors or professional researchers. This research looked at what service users / survivors thought about research that is of a psychological …
Service user research and why it hurts
Patsy Staddon recovered from alcoholism nearly 18 years ago and wanted to research the ways that current treatment is often unsuitable for women. Bristol’s Mental Health Trust ( Avon and Wiltshire) agreed to pay overheads and she has now completed four years’ research which is service user inspired, designed, led and carried out. She first …
Partnership research: researchers with and without learning difficulties working together
In 2005 a group of 20 researchers with and without learning difficulties came together for three residential workshops to learn — from each other — about how to plan research together. At the workshops we worked together designing, planning and piloting research projects ‘in partnership’. We held a small conference in June to tell people …
People with learning disabilities’ and carers’ research questions for investigating health risks
Most people with learning disabilities, family carers, and care-workers do not get the chance to decide about research projects. Anita Young asked 20 people with learning disabilities and 20 carers / care-workers about the big questions for doing a research project. The project was about making things better for health. Anita will talk about how …