Jen

Age at interview: 29

Brief Outline: Jen conducts scientific research on smoking, drug and alcohol use.

Background: Jen is a research scientist. Ethnic background: White British.

More about me...

Jen’s research largely focuses on the genetics of tobacco use. She often works with large-scale, pre-existing datasets, but also conducts lab-based behavioural studies. 

After finding it difficult to recruit for a study about smoking behaviour, Jen began involving people. With the help of her university’s participation manager, she redesigned the study information materials that were being sent out to potential participants because she suspected they may be the cause of the problem. She then interviewed some potential participants drawn from her target sample to discuss what they thought the problem was. The interviews showed that a number of things were possibly putting them off, but especially the way in which the study information was originally presented. They thought the new information packs were much better, and also highlighted some additional changes they would like to see, which were subsequently incorporated.

Afterwards, Jen said she wished she’d involved people sooner. She has learned a lot from the experience, and bears these lessons in mind now when constructing information packs for new studies, making sure the relevant information is presented clearly, and using pictures to illustrate some of the key points. She intends to involve people in reviewing the packs before they are sent for ethical review because ‘on the basis of past experience, this will save us a lot of time and energy and to-ing and fro-ing!’. She also thought that involving people earlier meant that their suggestions could be used to change the research. 

Sometimes Jen thinks researchers have become ‘hardwired to do things a certain way’ and having an ‘alternative perspective is really refreshing’. She said it’s important to take ‘a step back from yourself as a scientist and try to think about how it would be if you were receiving something like this [information] as a member of the group that you’re planning on recruiting from’. But she explained that this isn’t always so easy to do as a researcher because you spend a lot of time ‘writing and speaking in an academic way. Taking a step back can be more difficult than it sounds. She finds it helpful to explain her work to her friends and husband who don’t work in academia. 

Although she has never involved people throughout all stages of a study, Jen said she would be interested to see how that would work. She thought it would be difficult to see how they could make a difference to tasks requiring a lot of expertise, like statistical analyses, but would be happy to try to explain it to them and get their opinions on it. However, she thought they could contribute to interpreting and understanding the results, and that participant involvement could be particularly useful in the generation of ‘lay summaries’ of studies which often feature in academic papers. She has recommended involvement to colleagues. She especially encourages them to work with participation managers, whose role is to be a link between academics and the public and who are skilled at communicating complex information in a simple way.

Jen’s first experience of patient involvement helped her rescue a study that was failing to recruit. Involving people earlier would have saved 2 years of work.

Well that kind of initial participant involvement in the design, not of the experiment but of the study materials, came about after a study which I started running very unsuccessfully during my PhD. We needed to recruit 200 individuals for this study. We were recruiting from a finite number of individuals from a pre-existing dataset. So we sent out 600 invitations and this is back in 2011, 2012. And off the back of the 600 invitations, we received maybe 15/20 responses of which only five were positive, so a horrible positive recruitment rate. So we were racking our brains thinking what could be the problem… 

We were looking at our materials, we were thinking about the study, we were thinking maybe it’s because, you know, the participants we were inviting were older individuals… We thought that maybe people are worried that they are going to feel that we’re going to put pressure on them to, or look down on them for their smoking behaviour. And that’s not the point of the study at all. We’re just interested in defining smoking behaviour; we’re not interested in cessation, at the least in the context of this study, and we’re certainly not going to be judging anyone who comes in. So we thought kind of collectively that that was the issue, but to address it we decided that we were going to hold a focus group with a kind of a small selection of our participant pool. So we invited a number of these participants in to take part in a number of semi-structured one-to-one interviews. So before doing this we collated all of our invitation materials because this was really, this was what turned out to be the crux of the issue…

We asked for their initial responses and then we went through each section of the invitation letter and the information sheet step by step. And the first off-putting side was the title of the study; it was called Smoking Behaviour Study. They thought that made it sound a little bit like a dirty habit so we immediately as a result just retitled it Smoking Study. They said there was far too much information in the invitation letter. Time involvement also sounded too intense….

Other things that were pointed out as being off-putting were the use of this mystery device which again was described in the information sheet but we’d touched on it briefly in the invitation letter and people weren’t looking at the information sheet, so they just immediately, you know, put it to one side and decided they weren’t going to take part on that basis. There was too much text, it wasn’t clear exactly where the study was being run. So anyway, then we were moved onto the newly designed invitation materials. I mean these were a lot clearer, they had pictures of all the equipment we were going to be using which people immediately liked. The invitation letter was minimal. I think we never had more than one or two sentences per paragraph and a maximum of five paragraphs with lots of white space…

So that was really helpful for us. I think coming in from an academic starting point where you’re used to scientific writing and you’re used to writing for journals and not necessarily used to writing for a lay audience, you tend to err on the side of complexity rather than keeping things simple and to the point. And I realised in hindsight there was a lot of unnecessary description and overly complex words…

It was a really helpful experience and I wish that I had run something like this at the beginning of the study because it would have saved me two years’ worth of work.

Jen knows that making her speaking and writing style simpler and less full of scientific terms is an important skill, but it’s hard.

It’s taking a step back from yourself as a scientist and thinking about how it would be if you were receiving something like this as a member of the group that you’re planning on recruiting?

And is that easy to do?

No, no it’s not easy, especially when the majority of your working week is spent writing papers and giving conference presentations, you know, you kind of switch into this alternative way of speaking, of writing - taking a step back and thinking about doing things simply and clearly can be actually be a lot more difficult than it sounds. And I just mentioned that I was talking last night about writing a lay summary of a paper that I’m about to submit, and it’s that kind of thing which really does make your take a step back and think ‘how do I explain this simply?’, you know. Is there really any need to be so complex sometimes? And it’s actually quite nice if you’re just explaining a study that you’re running to a friend who doesn’t come from that kind of scientific background…

I mean sometimes it can be something as simple as just outlining a concept. If I may be struggling with describing something like that in a paper I find it easier to have a discussion with someone who doesn’t work in science or come from that kind of scientific or academic background to discuss the issue with them, and then I find it almost clarifies things in my mind from describing it simply. It can be really difficult to describe things simply and I think sometimes it’s very easy to hide behind complex terminology because you don’t fully understand it yourself. There’s nothing like trying to explain things clearly or teaching something to really solidify things for you…

I can only speak for myself but changing your style of writing, I mean that can take a lot of mental effort. I find it difficult because when I read something which I think I’ve written fairly simply it’s not necessarily that simple still. You find you use, you know, what I see perhaps is a simple piece of terminology that still makes something inaccessible to someone that doesn’t necessarily come from a scientific background. So even though I feel like I’ve done a good job and I, you know, I realise I do this because when we were going through iterations and I was working the participation manager I’d write something which I thought was fairly simple and I would send it to her and it would come back with these red track changes 

Jen thinks early training in communication skills would be valuable for new researchers. Members of the public would also benefit from training to make science more accessible.

Do you think that researchers could benefit from being trained in how to involve people?

Oh absolutely. That’s not something that you ever receive any formal training in, at least not in any of the PhD programmes or undergraduate programmes I’ve been involved in. It is important, communication skills in general are really important in science, and that’s not just the communicating with members of the public, that’s communicating with your peers as well. There’s a slight difference between your kind of classic public engagement side of things, and public engagement with a view to improving study design. That’s all well and good giving a talk in a public or tutorial, to actively engaging and listening and taking things on board…

I think it is important to be open to change, and, you know, you learn from your peers, you certainly have the potential to learn from people that would be taking part in your study, because I know that I definitely have…

I don’t think science should be such a closed off entity as I think it sometimes can be… It de-clouds what can be quite a mysterious discipline. And for that reason I think training people in certain methods so that someone, you know, your average person on the street can perhaps interpret what’s in a Daily Mail article with a little more scepticism. I mean that would be, and that would be a great thing [laughter]. But this is another problem, it’s making science accessible, which sometimes means making it too simple - which is why you see all these horrible headlines like “This gene causes obesity” and that’s not, that’s too basic, and to the point where it’s misleading. I think generally increasing public knowledge on scientific approaches and interpretation and encouraging a bit of scepticism, and encouraging people to think perhaps a little bit more critically over what’s reported is a really good thing. You know, and everyone wins in this instance.

Jen has learnt that involving people earlier would have saved her a lot of wasted time in making the information for participants more understandable and appealing.

So that was really helpful for us, I think, coming in from an academic starting point where you’re used to scientific writing and you’re used to writing for journals and not necessarily used to writing for a lay audience, you tend to err on the side of complexity rather than keeping things simple and to the point And I realised in hindsight there was a lot of unnecessary description and overly complex words, so in future in studies that I’m running now I keep the information sheet, you know – the information sheet contains a lot of information, but it’s laid out very neatly. There are pictures where there need to be pictures. But the invitation letter is always very simple and to the point so the people will actually go on to read the invitation, the information sheet. Yeah, and we changed the format of the information sheet to the double sided A4 colour sheet of paper rather than an A5 booklet which people just weren’t opening. Yeah, so it was a really helpful experience, and I wish that I had run something like this at the beginning of the study, because it would have saved me two years’ worth of work…

In the long run yes, it would have been more of a time saver if I'd done that at the very beginning during design of materials before we’d even submitted to ethics. I mean it would have, it would have saved us months if not years of time trying to recruit from participants who were not interested in taking part because the study didn’t, as it was presented, didn’t look very, very appealing.

Jen points out that you need the advice of people who reflect the target group of your research.

I think it’s important to involve individuals across the breadth of your recruitment pool, otherwise you’re going to be limiting yourself to opinions that perhaps are just representative of a sub-group and I don’t think that’s necessarily very healthy. If you’re basing your redesign of materials and methods just on a subset of a population, then that’s probably the population that you’re going to end up recruiting from, and that’s going to introduce some level of bias into your sample, and bias is not good at any time.

Jen learnt the hard way that involving people earlier could have saved a lot of time and money. She advises colleagues to use their local PPI coordinators.

I would recommend to anyone, if you’re lucky enough to have that facility, to have someone that is used to engaging with members of the public or with a particular cohort on a daily basis, they are an invaluable source of information, and working with them from step one is going to save you as a researcher probably months of time in the long run. You’re not going to be having to play tag with ethics committees if you’re constantly making changes which then need to be approved. You’re not going to go through months of, you know, really poor recruitment - because you're going to make sure that everything is as perfect from the get go. And it was a hard lesson for me to learn but I’m so glad I went through that process. It was invaluable.