Many years ago as I was taking my first steps into Information Technology management I was invited by the board of directors to present a proposal detailing my recommendations on resolving the performance issues of the company’s computer system. The day duly arrived, I was summoned to join them in the boardroom and nevously began my presentation. I launched enthusiastically into my talk on faster processors, dual processors, resilient systems and the huge benefits to be achieved by installing more system memory. As I paused for breath I felt a sharp kick to my right shin, administered by my then boss who immediately took over the presentation and shifted the tone from my technical jargon to the pounds, shillings and pence benefits of the changes I’d proposed. The look on the faces around me suddenly changed from disinterested bewilderment to wide-eyed engagement. Within minutes the directors had agreed to everything I’d proposed and I’d gained the valuable lesson “know your audience” to add to my bruised shin.
In recent months I’ve taken quite an interest in the many strands of research into chronic kidney disease available from reputable sources on the internet. Almost without exception the only part of the document I’ve understood has been the eye-catching headline. The detail of the research has been couched in such impenetrable language that my brain has shut down in frustration and I’ve immediately regretted opening the damn document.
I find the use of overly technical language in research documents particularly sad because there has been a marked shift in both hospital care and medical research toward the involvement of patients in decision making. Following the humbling experience of my first board level presentation I quickly learned that in order to gain approval for my recommendations I had to use the language of my audience who not only had to work with the solutions I proposed but frequently had to pay for them too. All subsequent proposals I wrote contained a concise, easlly digested “Executive Summary” which was often the only part of the proposal the board members read and understood even though the actual proposal had to include a huge amount of technical detail to demonstrate that my recommendations were the result of months, sometimes years of investigation. Of course health research papers have to be subjected to very close scrutiny but how I wish they included an “Idiots Guide” so that interested patients and lay people could comprehend the benefits to them.
At a time when patients are being invited to engage with the research community I hope the research community makes a serious attempt to engage with patients.
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I couldn’t agree with you more Rob. You would probably understand more than I with your I.t knowledge, but as you say, trying to make head or tail out of these documents is like banging your head against a wall.
Like you I have become more interested in the research side of things ( must be getting older) in the past year and would like to know what is going on with things that, at the end of the day, may well affect my life.
As patients, we now have more knowledge of the diseases and treatments since the computer became a common object in people’s homes.
When I started Dialysis in 1987, the only way to find out things was to ask, and most of the time you only got told what they wanted you to know. Nowadays though we have access to so much information at the touch of a button or screen. Not only patients but also their families can find out things about up and coming developments and things like side effects, it makes us able to take more control of our lives and our families and also people from the medical profession, have a better understanding of what we go through.
Thanks for taking the time to post a comment Brian, it’s much appreciated. There are signs that the research community is taking patient involvement more seriously with organisations like the excellent Citizen Scientist (@citzsci) and I was interviewed yesterday by http://www.herc.ac.uk/ for a role as a patient reviewer of their research. I’d still like to see more information about research coming out of our renal centres though.