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Best practice in involving service users and carers in research: Confronting the issues and doing it for real
We aim to tease out the discrepancies between theory and practice when involving service users and carers in research and to make participants discuss the issues behind the reality of “meaningful involvement”. In order to achieve this, we will use our own involvement in collaboration with the local university. We are very aware that we …
Patient involvement and research ethics: Experiences from the Macmillan Listening Study
This paper reports the experiences of setting up the Macmillan Listening Study. The study is commissioned and funded by Macmillan Cancer Relief and aims to explore the attitudes people affected by cancer have about cancer research and to identify their research priorities. The study is participatory in design and thus involves cancer patients and carers …
Undertaking palliative care research: Service users involvement
This paper will discuss a research project being undertaken in palliative care that includes the experience, knowledge and perspectives of service users throughout the research process. This inclusion is achieved via a research User Advisory Group that work with the researcher influencing all stages of the research. The research itself is concerned with the accounts …
A survivor – led evaluation of a survivor-led service
This workshop will present some information about the evaluation of the Leeds Survivor Led Crisis Service carried out by the team, under the following headings: Training: a developmental approach was taken to training to take into account the previous experience and skills of all team members; Mutual support and teamwork: we shall explore the issues …
Making decisions about how to apply what you’ve found out: Involving people with learning difficulties in a European research project
‘I like, I love’ is a research project that covers 6 European countries, looking for a new resource for people with learning difficulties around sexual health that is useful in all partner countries. This report from the researchers involved in the project will consider the professional involvement of people with learning difficulties. The report will …
Researching recovery : User involvement in data analysis
The paper will include an outline of the process involved in analysing and interpreting the data in a user led research project on recovery from psychosis. This will involve the explanation of the following stages : Stage 1 : the process of data analysis by user researchers using Interpretative Phenomenological Analysis (IPA) including reasons for …
Patient and carer involvement in NICE clinical guidelines: Building on the good, learning from the not-so-good
From their inception, Guideline Development Groups (GDGs) commissioned by the National Institute for Clinical Excellence (NICE) have included, as a minimum, two patient and/or carer members. This paper presents the findings of a project to evaluate the methods and impact of patient and carer involvement in the first clinical guidelines developed on behalf of NICE. …
National Evaluation of Sure Start – Involving parents in Sure Start local evaluations. Stories from the field
The National Evaluation of Sure Start (NESS) includes one module that supports the 524 Sure Start Local Programmes to carry out evaluations of their services, looking both at process and outcomes. Many programmes have adopted methodologies that include the training and development of parents to act as evaluators and researchers. NESS also acts as a …