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Get involved with research

At McPin, when we talk about involvement in research, we usually mean people drawing on their personal experience – or expertise from experience – to help improve mental health research.

When you are involved with research you take an active role in designing and influencing it. You contribute what personal experience you feel is relevant or helpful to develop the research. This could be your experience of having a particular mental health problem, of using services, or being a carer. Being involved in research in this way is commonly referred to as ‘Public and Patient Involvement’ or PPI.

“Patient and public involvement in research is often defined as doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them.”

INVOLVE, THE NATIONAL ADVISORY BODY FOR INVOLVEMENT

At McPin, we believe that good public involvement can lead to research that is of a higher quality, more relevant, and has a greater chance of contributing to positive change.  

Are you a young person interested in research? Check out our YOUNG PEOPLE’S NETWORK

What is the difference between participation in research and involvement?

When you are a participant in research, you contribute data to a research project which has already been planned and developed. This could be filling out a survey, speaking to an interviewer or helping to test the effectiveness of an intervention in an experimental study.

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Why is it important to get involved in research?

People who have expertise from experience bring knowledge and a perspective that is different to others, for example, those who have gained their expertise via their profession, as a researcher or doctor, say. Experts by experience can help make sure that relevant research questions are asked, that participants have a positive experience and are able to spot and challenge any assumptions that the research team makes. It is not only a great opportunity to improve research and its real world impact but it can also be personally rewarding.

If I choose to get involved, what would I be doing?

At McPin, we recruit people to advisory groups and we have a peer review panel. Advisory groups usually meet in person. Members of the peer review panel review documents such as study protocols and participant information sheets at home via email.  We also have our own Young People’s Advisory Group and a wider Young People’s Network that advises on mental health research in children and young people.

The groups get involved with research by:

  • Working with research funders to prioritise research. This could by taking part in a research priority-setting project, like our Young People’s Advisory group did with Right People, Right Questions to identify the Top Ten research questions for young people’s mental health, or it could be giving feedback on funding proposals.
  • Offering advice as members of an advisory group (sometimes known as a Lived Experience Advisory Group or ‘LEAP’). For example, we have a group of 11 people that help advise the gameChange study. Members helped develop the virtual reality therapy that is being tested and have provided input into almost all other aspects of the study. You can read about a member’s experiences on p7 of our February 2020 Involvement Bulletin.   
  • Commenting on and developing research materials. This could be the information sheet and consent form that are given to participants. You could be asked to check whether they are understandable and acceptable to a non-scientific audience.
  • Undertaking interviews with research participants. Sometimes members of advisory groups have research skills that enable them to carry out research work – such as conducting interviews. For example, a member of the Feeling Safe study advisory group has conducted interviews with people who participated in the study. 

For further information about being a member of a research advisory group supported by the McPin Foundation click here.

McPin has a Public Involvement in Research programme which works with partners and advisory groups. The aim is to promote expertise from experience in research and learn more about how best to deliver public involvement initiatives.

SIGN UP to our Involvement Bulletin to hear about involvement opportunities at McPin and elsewhere

EMAIL thomaskabir@mcpin.org

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STILL NEED HELP? These organisations may be able to help

People in Research

National Service User Network (NSUN)

Be Part of Research

INVOLVE