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Tuesday, 25 February 2014
En visning fra Danmark - a view from Denmark
My talk will obviously revolve around the course of our life's events and how that affects wellbeing. The odd fact is that I would not have involved in all of this without having had cancer. I am fitter, healthier and more interested in my well being.
My other role as Associate Director for Patient Involvement in Research is the real reason I am here but our life course gathers up all our experiences so I am looking forward to hearing the other contributers.
Posted by Derek online at 08:28
Wednesday, 19 February 2014
Involvement is about the Pulse of Research
I have read many research proposals, applications and bids for funding over the past fifteen years. A few are very well written but many need a simple infusion of blood. Occasionally some applications are downright poor and require life-giving resucitation.
It seems, to me, as if the training that researchers receive is so rigorously rooted in objectivity and distance that the very essence and colour is often drained from the soul of research. Even contracts for research organisations suffer this same fate.
NHS research is more than testing whether A is better than B or that this contract is better than that. They are all ultimately about seeking to improve people's lives, treatment and care.
They require a genuine sense of why it is being done and the nature of its value. To fully understand this value researchers and contract managers need to talk to those who will the longer term beneficiaries of their work.
Although researchers are increasingly involving patients, carers and the public in helping to improve research it can at times be restricted to offering advice on the lay summary, improving the patient information leaflets or merely commenting on the section on patient and public involvement.
My most frequent observation, when reading applications, is that I don't get a sense of the 'person'. The patient or service user is missing.
I want some brief explanation of why it is important for patients: the numbers of people affected and the general need for this research. I would like a sense of the individual person and the potential value it might bring to their lives.
I would like to read about this in short sentences using paragraphs and headings rather than a single stream of text. I would prefer words that your non-research friends and relatives could understand.
I would rather not have to have a medical dictionary to hand terms and have to spend time working out the various acronyms. I would like you to use a spell checker when there is clearly a line under the word and a calculator to work out the sums in the costings.
Involving people in research, at it's very best, brings a flush of life and can help pump blood through the whole body of the research. It can obviously help correct some errors but more importantly it can add value to the whole process. It is an opportunity and not another chore.
It offers the potential to significantly enrich the purpose of the research, set the appropriate tone and may provide a moral compass to ensure the research is done and applied.
It is the reminder that the person who is most likely to benefit is living and breathing. It is the pulse of research.
Posted by Derek online at 06:16