Researchers' experiences of patient & public involvement

Jen

Female
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.

Audio & video

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.

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