People who get involved in health research can come from all sorts of backgrounds and bring various skills and experience. Although they are often motivated by their own illness or caring for a family member, people with no particular illness experience can also be involved. Having first-hand experience of a particular condition can give researchers valuable insight into what it’s like to be a patient or a carer. But just bringing a general patient or carer perspective can also be valuable.
Catherine and Kath argued that it was possible to relate your own experience to that of people with other conditions, and sometimes it might be easier to get involved in a topic you did not feel so emotional about. Helena felt it was important for researchers to be clear why they wanted someone; she would not be able, for example to comment much on specific conditions other than her own, but she would bring general understanding of having a long term condition. Very recent or current experience can be important for some studies but several people made the point that it was important to feel strong enough (physically, mentally and emotionally) when you got involved.
Roger A is just an ordinary chap’ – but he is also an expert in caring for someone with motor neurone disease.
Part of Catherines early training for involvement was about learning to take a wider view beyond your own experience.
Kath found it upsetting when things were too close to her own experience. It’s possible to imagine yourself in others’ shoes and still bring a useful lay perspective.
It’s important to be clear what expertise someone is bringing to the table and whether direct experience of a particular condition is needed. The same is true about what expertise each researcher brings.
Anthony feels general members of the public bring a valuable different view.
Anyone should be able to get involved, in different ways. Being able to listen and ask questions is the main thing.
Charles brings his skills as a retired research scientist but you don’t have to be a specialist. Time, interest and persistence are more important.
Catherines microbiology degree helps her to understand the lingo used by researchers, but you don’t have to get involved in projects you don’t understand.
What’s needed is someone who can be a true critical friend.
Sometimes researchers who have a particular condition act as lay advisers. They have a legitimate perspective, but Rosie wonders if insiders’ can be critical enough.
People in the group Margaret works with are from various backgrounds and age groups who contribute in different ways.
Kath has developed training for people who haven’t been to university like her. Researchers need to be more inventive about how to involve people.
If you only ask people who already understand research, you won’t get such useful information. You need views from people who wouldn’t want to take part too.
It’s important to be professional, read up on research and be committed to involvement.
Maxine recommends the NHS website Behind the Headlines’ as an easy way for people to learn more about science.
Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.
Derek had no scientific knowledge at all. Involvement needs ordinary people.
In spite of Catherines skills and experience, she will never be on the same side as the professionals. She brings a carer’s view.
Getting involved in actually doing research may be easier for people who have had some previous related experience. Maxine had experience as a librarian which helped her doing a ‘systematic review’* of all the research evidence on vitiligo in academic journals. Rosie had some previous experience in interviewing people but was given extra training. She felt that people with no previous background could be involved, if they got that extra training and support.
Involvement is about bridging the gap between researchers and patients. Some roles don’t require much training, but helping carry out research might.
As she gets familiar with research Helen worries she starts to lose her ability to be the person on the bus who doesn’t know anything.
Last reviewed July 2017.
Last updated March 2016.