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What is the best method to identify the research priorities of patients? An example using the Q-sort in people with ulcerative colitis and health professionals
We wished to compare the research priorities of both people with ulcerative colitis and health professionals involved in the care of UC patients. Statements were generated by patients using in-depth interviews and focus groups. Q sort packs were developed in which individuals rank their preferences and ranked statements were factor analysed to identify subjective perspectives …
The research views and priorities of people affected by cancer: Findings from the Macmillan Listening Study
This paper responds to the theme of public involvement in research by presenting the Macmillan Listening Study, a national research priority setting exercise involving people affected by cancer. 105 cancer patients participated in 17 consultation groups at ten sites across the UK. In these groups, participants generated and prioritised their own research interests and discussed …
Tackling Treatment Uncertainties – Together
The James Lind Alliance (JLA) has been established to foster discussion and debate among patients (and carers) and clinicians (doctors, nurses, therapists and others who treat patients) about the uncertainties of effects of treatments. The JLA supports the development of working partnerships of patient and clinician groups to address their areas of uncertainties together. This …
Patient and Public Involvement in Healthcare Research
I am doing research about young adults who have had a stroke. My supervisors designed the study. This meant that members of the public were not involved in the study from the start. But they are involved now. The Advisory Group talks about what people said in the research interviews. This helps me to understand …
Involving people with aphasia in developing an assessment
Kate Swinburn works with people who have aphasia, a communication difficulty. She wanted to develop an assessment – a way of finding out about life with aphasia. The assessment is called The Communication Disability Profile. It asks what people with aphasia find easy and difficult, and what gets in their way. It asks about their …
Involving people with communication difficulties in research: our experience with people who have aphasia as a result of stroke
People with aphasia have communication difficulties. They have problems with understanding what is said and putting together what they want to say. Our programme of stroke research looks at aphasia. Local people with aphasia from ‘Speakability’ have got involved with different projects in different ways. ‘Speakability’ members helped produce an ‘aphasia friendly’ consent form that …
Latin American Learning
Why? The NHS often struggles to involve both individual patients and the general public satisfactorily in its decision making. It knows it can learn from other countries which historically have concentrated more on community participation. What? Geoff Meads and his team at Warwick University have researched seven countries of Latin America over the past three …
Involving patients and the public in the NHS: the role of the Scottish Health Council
This presentation will describe the process of involving patients and the public in the assessment of NHS Board’s patient focus and public involvement activities across Scotland by the Scottish Health Council. This presentation will also explore how the Scottish Health Council promotes and develops good practice in the involvement of patients and the public. The …