A key message from people we spoke to is that involvement can be as much or as little as you want it to be (see also ‘Types of involvement‘). They described a range of activities and tasks, most commonly attending meetings to give a patient, family or public perspective, and commenting on documents.
People who are asked to take part in health research are first given a ‘participant information sheet’ as part of the consent process, so they understand what the study is about and what will happen to them if they take part. All such leaflets are checked by a research ethics committee before a study is allowed to start. It is vital that these leaflets are clear and easily understandable, so being asked to comment on how they are worded is one of the most common ways for people to get involved. However, Helena argued that this could just as easily be done by a communications professional. Many research funders also ask researchers to include a ‘lay summary’ (an ‘easy to understand’ explanation of their research) in their research proposal, and helping write the lay summary is another common form of involvement.
Beryl explains how lay input can improve the information given to research participants so it is clear to them what the trial is about.
Alan’s cancer research panel checks whether patients will understand the leaflets they are given about taking part in research.
Roger B describes rewording a patient information sheet to help it get through an ethics committee.
Helen describes the process of checking leaflets are understandable and cover practical real-life issues which matter to patients.
Anne was delighted that her suggestion for a picture to illustrate a leaflet about brain donation was taken up.
It’s important that patient information leaflets are designed in a way that grabs peoples attention.
Catherine was distressed by the logo the researchers wanted to use in their study. She was pleased she spoke up about it because they changed it.
Peter describes the questions he asks himself when reviewing a research proposal.
Sharon reviews proposals for research in children. She always tries to think herself into the shoes of a mum or dad asked if their child will take part.
Since her stroke, Marney finds meetings tiring, although she enjoys meeting people. Contributing by email is easier because she can go at her own pace.
Stephen attends cancer clinical studies group meetings and conferences. He may speak at a conference for young people with cancer.
Margaret has worked both on individual trials and on national and European committees. She has given interviews and made a podcast to raise awareness of research.
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.
There are many different ways for people to contribute that suit different skills and interests.
Maxine describes what happened in a James Lind Alliance Priority Setting Partnership on skin research and how it has led to new research proposals.
Sharon has been involved at many different levels. She and another consumer have done their own piece of research on parents’ research priorities for their children.
Carolyn describes seeing a trial through from the initial idea to sitting on the trial steering committee. She has helped recruit patients with a podcast.
Dave G has helped recruit patients, give presentations and analyse data from focus groups.
Rosie helped collect and analyse some research interviews, and implement findings. She chaired the implementation group.
Mary is proud to have helped edit a book on survivor research; she has also reviewed a book based on a PhD study she took part in.
Her interest in the link between a rare condition and possible environmental factors has led Anne to write a paper with a professor of epidemiology.
Richard was flattered to have been invited to be a co-author on an academic paper. He describes how the style of writing was like learning another language.
In his national role Derek has supported a mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
‘Types of Involvement‘
‘Skills and background for involvement‘
‘The value and impact of patient and public involvement in research‘
Last reviewed July 2017.