Here in the UK in a masterpiece of marketing genius the makers of Marmite (similar to Vegemite) created the slogan “You either love it or hate it”. In this article Maggy Jackson examines paid market research through this lens.

Do we have that love affair! I had a brief encounter this week and want to tell all! Love- hate relationships! Whatever your views it does cause dissent as to the benefits and disadvantages.

I have contributed to a research programme by one of the drug companies who are asking CLL patients for their experiences of treatment and how they feel about having CLL.

I am upfront in saying I was paid a fee for taking part in the interview and pre- interview tasks. However I have decided to donate the fee to a Blood Cancer charity. I am aware that not every one will be comfortable with a drug company doing this research or indeed paying participants.

I just want to give my perspective on the whole thing. I do not judge anyone for having views so would like to put forward my own. Ethics is something I pride myself on. Particularly because my career role insists quite rightly on ethical practice. In my view anyone asking for our experiences are to be admired as it is so nice to be heard.

However how they use the information given is not 100 percent clear. It was said they would use it when developing new treatments. I sincerely hope this is the case, not for any other spurious reason. I have signed a confidentiality statement to prevent me from disclosing specific details.

However this is not about details more about ethics. To my knowledge most of clinical research is funded by the big pharmaceutical companies. These interests are declared when research findings are published. I have no issue with that. The advent of novel CLL treatments have come on in leaps and bounds since my initial diagnosis in 2006. To the
credit of the dedication of research teams throughout the world. Development is costly and then the
cost of drugs is another factor. It is a big money industry.

Personally I have taken advantage of two of the relatively new BTK inhibitors as a mainstream treatment coming out of clinical trials. I am grateful for having been prescribed such treatment.

Yet severely lacking in the care is a focus on the psychological effects of a CLL diagnosis. It is refreshing to hope that this factor is now being considered alongside the clinical effect of treatment. You may think”Maggy would say that, she is a psychotherapist.” I am passionate about listening to people’s experiences. Indeed I use personal therapy to deal with my own on a regular basis.

Others amongst our group may disapprove of the methodology. But whatever your views, just like Marmite it is bound to generate the love it- hate it debate.I am saying how I view this research. Am not expecting agreement or criticism as my judgement is that hopefully my contribution will have some value. Maybe I am assuaging the slight negativity by donating the fee.

Details of the project have been published on this site. Take a look and make up your mind.

For the record- I love Marmite!

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