Uncertainty in making decisions about health care - report
by Jenny Henderson
For the last two years, I have been working with the James Lind Alliance on urinary incontinence. I am a person with MS and volunteered to sit on this committee on behalf of the MS Trust.
Many meetings, both in person and by conference telephone call have occurred during this time and many thought processes have been bought to bear. Our aim was to find the most common imponderables in relation to urinary incontinence and to set priorities for research.
Finally, late in 2008, we had a brain storming meeting, which involved representatives from such organisations as the Bladder & Bowel Foundation, the Cochrane Incontinence Group, Glasgow Caledonian University, the Royal College of Obstetricians & Gynaecologists, the Bristol Urological Institute and the British Society of Urogynaecology amongst many others. Involved in the collaboration were 21 partner organisations - 13 clinical and 8 patient groups.
Prior to this meeting we had been given 519 uncertainties that had been gathered. These were refined down to 226 after removing duplications. Of these 79 came from patients and carers; 37 from clinicians; 6 from patients & clinicians; 2 were from patients & research recommendations and 102 came from research recommendations.
A preliminary priority setting process was conducted by e-mail. Eleven partner organisations choosing their top ten uncertainties, which we then slimmed down to ten on the day of the meeting.
The final stage in the process will be to submit a list of prioritised research questions, addressing the shared treatment uncertainties of patients and clinicians.
A paper is to be published on the process and the priorities to promote the work at various conferences, including NICE and the Cochrane Conference.
We will keep you updated on the final list of priorities for research and any other interesting items resulting from this partnership