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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 – of the phenomenon being researched. This makes it more likely that the research will be relevant and has a greater chance of contributing to change.

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.

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?

There are a number of valuable contributions that people with expertise from experience can make. Below are a few examples throughout the research process.

RESEARCH MATERIALS You are asked to comment on materials that will be given to participants, such as the information sheet and consent form.

You may think that the materials contain too much technical jargon or that some of the words are inappropriate. You would have the chance to propose alternatives and edit the materials.

DATA COLLECTION The data will be collected through interviews with service users who have a particular mental health problem (e.g. bipolar). They will be asked about their experiences with services.

Drawing on your own experiences and thinking about how you would respond in this circumstance, you may comment that the team will need to reassure participants that their responses will be confidential and that the services they use will not know what they have said, nor will their participation affect any treatment they receive. 

DATA ANALYSIS The researchers think that the most interesting point made during the interviews is how easy it was for participants to access services.

As someone with experience of services, you may think that this is too narrow an interpretation of the data and suggest that equally interesting was what participants said about their relationship with their therapist. Because of your different lived experiences, this point in the data resonated with you but may have been under-appreciated by the researchers.

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

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