Another way to make a difference

I was in the doctor's surgery a couple of weeks ago and whilst I was waiting for the receptionist I read the notices on the boards.  Most were providing information about health conditions or local support groups, but two caught my eye as they were requests for research participants.

My job involves university research - and research wouldn't happen without people agreeing to participate.  I first properly learned about research during my A levels - both Psychology and Sociology A levels focused on classic research studies (many of which wouldn't pass an ethics committee today!) as well as contemporary research and it was clearly apparent how much of the knowledge we have today is due to the willingness of people to participate in research (people unwittingly taking part in research studies is another ethical issue entirely!).  One of my teachers worked part time at the university and she encouraged us to volunteer to take part in experiments if we could.  I happily volunteered and took part in quite a few - most were straightforward, didn't take much time, and I was paid a few pounds for attending.

At university the importance of research became even clearer, and I began to realise just how hard it is to recruit participants (or respondents, depending on what terminology you prefer).  There would often be leaflets in lecture theatres and waiting areas asking for people to take part in this focus group or complete that survey.  I volunteered to take part in an eye tracking experiment - they needed people with perfect vision (sadly I don't have that any more!) and who had English as a first language.  The psychology department was near my college so it wasn't much effort for me to attend and £5 an hour wasn't too bad!  The experiments sound a bit grim writing them down - I had a bite bar made (a mould of my teeth which was attached to a metal bar - I held this mould in my mouth, the metal bar was attached to a vertical metal bar to ensure my head stayed in one position) and my head was then strapped into a restraint.  This meant my head was completely still so the machine could accurately track how my eyes moved.  There were things happening on the screen and I had a hand held control I had to push buttons on depending on what I could see and what I'd been asked.  Clearly, not everyone would be happy with such an experiment, but I didn't mind it and apparently my eyes track really well.  I was asked back by that person to do more experiments with her, and my name was passed on to another PhD student so I could take part in his too.  Both were really grateful for my time and to be honest, I liked participating and seeing the screenshots of how my eyes moved across a page!

My PhD involved interviewing men who had been diagnosed with breast cancer.  I knew from the beginning this would be tricky - I ended up interviewing fewer than ten as it was so hard to find men who had been diagnosed, and even harder to find men who had been diagnosed who were willing to be interviewed.  I am so, so grateful to those who did agree.  Since then, I've always said I'll participate in research where I can - I've been interviewed, I've completed questionnaires, I've been involved in medical research.  I've participated in research done by universities, the NHS, charities, organisations.  I've occasionally been reimbursed for my time and I've always been genuinely thanked.  

I've never done medical testing such as trial a new drug or treatment, the interviews/questionnaires have just focused on my experiences and opinions.  I'm more than happy to talk about me for an hour or so to a captive audience!  

Of the studies being advertised in my doctor's surgery, I was eligible for one as I'm the right age group.  I took a questionnaire, I filled it in at home (a few multiple choice questions asking me why I had(n't) done x, y and z) and I'll return it next week.  It took me about five minutes but I know it will help the researchers.  Response rates for questionnaires are generally quite low - think of all the women in my age group who saw that advertisement, in all the surgeries in which it's been posted.  Thousands, probably. How many women actually took a questionnaire and filled it in?  Probably a relatively low number.  This particular research is being organised by researchers at two universities and funded by a drug company - there must be a lot of people employed solely on this project and their work (and study, as there are bound to be PhD students involved somewhere!) relies on the kindness of people to take a few minutes out of their day to answer some questions.  Ethics committees have to believe that a research project is of benefit to a community in order to approve it, so I am confident that my participation will be of use.

If you are ever able to participate in research, I do urge you to seriously consider it: obviously, not all research is appropriate for all people, but you really would be helping out researchers and in turn contributing to real-world research which does have the power to impact on the future.