I’ll tell you what I want, what I really really want…

It isn’t common practice to ask for patient opinion on research priorities, but that is exactly what one group of researchers have done. I am still on the topic of dialysis, not that I am approaching that stage, but it is a much larger field than I first envisaged. The paper that caught my attention is from Canada and was published in 2014. They asked 173 patients, 37 carers and 107 health care professionals to identify what they felt should be priorities for research related to dialysis. The outcome was a long list but there are some common themes.

The patients were either having dialysis or nearing that point, the carers were specific to these patients and health care workers were mostly doctors and nurses but included dieticians, social workers and pharmacists, all working in the field of end stage renal failure.

The methods they used had been previously validated and involved both questionnaires and focus groups. The resultant suggestions were grouped by theme and any areas that did not relate to end stage renal disease were excluded, as not specific to the purpose of this study. The whole aim of the study was to identify ‘uncertainties’ where research could help improve patient care and management. Treatment uncertainties are questions about treatments which cannot be answered by existing research.
While they were expressed as questions in the results, using 1-2 words to summarise gives the following lists:

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The first column, on the left, covers the topics patients came up with and the second, to the right, was from doctors.
Patients were clearly focussed on how they felt – 7 of the top ten concerned problematic symptoms. It isn’t surprising that doctors had more technical concerns and of course one hopes that solving technical issues will have a knock-on effect on symptoms. It IS pleasing to see that doctors also mentioned itching and cramps, but maybe a little disappointing that the two lists were not more alike.

The whole study was undertaken with the help of the James Lind Alliance.

This is a non-profit organisation that helps establish ‘priority setting partnerships’ in areas of medical research.

[James Lind was the naval surgeon from the 18th century who demonstrated treating scurvy with oranges worked. His approach to the ‘uncertainly’ was to divide the 12 suffering sailors into six groups (2 sailors in each) and gave each couple a different treatment. The couple fed oranges and lemons got better. It might seem obvious to us nowadays to set up a trial like this, but in 1747 it had never been done before. The name of the organisation is a tribute to his pioneering work.]

It was actually set up in 2004 by one of the Cochrane Collection Founders – Sir Ian Chalmers, who himself is somewhat of a pioneer in evidence-based medicine.

Back to dialysis and research priorities – what happens next?

I confess to being a little disappointed when I reached the end of the paper. The authors state:

“While we do not feel that these top 10 research uncertainties should be the sole driver of the research agenda, we do believe they should receive careful consideration by funders and researchers alike.”

It is as if they have just put a notice up on the highway saying “it would be good to do this if we could” along with the unspoken “but we cant afford it”.

Then I found a follow-up paper one year later (2015) by some of the same researchers that concludes:

“We found that approximately only 1 in 5 current clinical research in dialysis addressed 1 of the top 10 research priorities.”

 

The problem is, research is often driven by the specific interests of the academic researcher and funding is most likely to come from pharmaceutical companies, so if there is no obvious drug as an end result then the research is less attractive.

If the ultimate outcome for medical research is to improve healthcare for patients then there is an inherent imperative to include patient views in determining what research is worth funding.
This is one of the roles picked up by charities, each pounding the drum for their own cause. But somehow this seems inadequate. It is as if a whole section of society has become skewed so as to lose sight of the objectives. To improve patient experience of health then patients need a louder voice. One would have hoped that by giving the voice an academic foundation, a proper study to identify the patient-voice as in the first paper, then the result would be more patient-orientated research, but this is not supported by the findings of the second paper.

Maybe, and I do hope this is the case, there is a time-lag from discovering patient needs or ‘uncertainties’ to setting up the research to answer the questions – I shall have to revisit this issue next year!

 

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Sometimes you have to search for the rainbow

 

 
Paper 1:
Manns, B.F., Hemmelgarn, B., Lillie, E. et al, Setting research priorities for patients on or nearing dialysis. Clin J Am Soc Nephrol. 2014;9:1813–1821.
http://cjasn.asnjournals.org/content/9/10/1813.full.pdf

Paper 2:
Jun M, Manns B, Laupacis A, et al. Assessing the extent to which current clinical research is consistent with patient priorities: a scoping review using a case study in patients on or nearing dialysis. Canadian Journal of Kidney Health and Disease. 2015;2:35.
doi:10.1186/s40697-015-0070-9.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590701/

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