This was supposed to be my first post of the year, but a few days ago I felt the need for a minor rant about the claims being made about a new app. I hope it isn’t too late in the day to be blogging about New Year’s Resolutions. I suspect this is about the time when quite a few good intentions start to slide. But if you’re struggling to keep up with your gym visits, diet or newly decaffeinated lifestyle, here’s an idea for a resolution you can easily keep and which will make a difference to the whole of society, not just yourself.
BE A RESEARCH PARTICIPANT SOMETIME IN 2015
I’ve blogged a fair bit here about the challenges to research. One of the biggest ones in any human studies is recruitment. When you add it up, huge numbers of people are needed to provide useful results or training to the researchers of the future. To illustrate this, I’m going to imagine an average psychology department lecturer. This hypothetical individual has one big grant on the go for which she needs to recruit, say, 30 children with Down syndrome, 30 children with autism, and 30 children who are ‘typically developing’ – i.e. have no specific diagnosis or difficulty. Recruiting these children will require the co-operation of their parents and in order to reach out to them the researcher will probably need help from local schools or clinical services too.
As well as her own grant, this PI (principal investigator – i.e. someone in charge of a research group) will also have 2 or 3 PhD students. Probably one of them isn’t collecting much data in 2015 – maybe he’s busy writing his thesis – but the other two will also need participants. Student A is doing an online survey of parents of children with Down syndrome comparing experiences of mothers and fathers so she is looking for 100 families and in each case needs both parents to complete the survey. Student B is exploring how confident teachers feel about having children with autism in their class. She is doing interviews so she doesn’t need so many people – say 20 teachers – but each one will need to commit to a 90 minute interview and some questionnaires about their background and experience.
On top of that, our fictional PI is supervising some Masters projects and undergraduate students. A group of them will do questionnaire studies with their fellow students – maybe 60 or so participants. Two Masters students will do some observation of play in nursery schools so they’ll need a couple of nurseries to sign up, along with a majority of parents whose children attend a specific room in each nursery (say 30). One final Masters student wants to try something ethnographic so he is going to spend time at a support and social group for siblings of children with intellectual disabilities. To permit his project to go ahead, all 14 people attending the group will have to give permission for him to be there and record his experiences.
Let’s add up the numbers. This pretend researcher will need more than 400 people to directly consent to be involved in her projects. Another 150 or more people will be involved either because they are the parents of the children in the studies, or because they are gatekeepers – such as nursery and school staff. And this is only one individual. Here in Edinburgh our psychology department has about 50 full time staff. Other departments – medicine, education, health and social sciences – will be looking for human volunteers for their studies. And the University of Edinburgh is one of four Universities in this city. So collectively there are easily going to be tens of thousands of volunteers approached with requests to participate in a year.
My daughter’s first EEG!
It is tremendously hard work finding people willing to engage with research in these sorts of numbers. As you can imagine, the same people end up being involved over and over again. Last year my children, husband and I took part in seven research studies between us. Research participants very often come from families with academic backgrounds, like mine, because we’re easy to locate in University towns and we’re sympathetic to the difficulty of recruitment. I’m not saying my children are extraordinary, but of course a study with my kids and the children of my colleagues – coming from privlieged and highly educated backgrounds, and a narrow professional sector – can’t really claim to have worked with a group representative of society as a whole.
Another group who are very research active are parents of children with known difficulties. These parents are very motivated to engage with researchers because they hope it will benefit their children or future generations. Perhaps also they are awre that some of the supports offered to their children are based on previous research, and therefore previous generations of participants. But these studies nearly always need a group of typical kids as a comparison, and they are much harder to recruit. Even though ‘normal’ families massively outnumber those who include children with specific diagnoses, their parents don’t have the same emotional and personal motivation to engage with academics.
So, if you do one thing this year, be a research participant. If you can, sign up with a local active research department. If you live far from your nearest University, you can complete online surveys or questionnaire studies by post. Interview studies can sometimes take place by phone. Please please give your time – think of it like blood donation. A small sacrifice for the greater good. Your contribution will increase understanding, help train future researchers, and in almost every case I think you’ll also find it fun. Give it a try!
