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Participating in Research

There are many ways you can contribute to research. One way is to volunteer to become a research participant. This means you provide information or data about yourself to researchers as part of their study. Below are some questions that you might have about participation.

Why should I participate in research?

Mental health research aims to understand why people experience mental health problems and how they can be prevented or their impact reduced. Participating in research is a way that you can contribute to this. A lot of people who have personal experience of mental health issues volunteer to participate because they want to help other people in a similar situation.

What would I have to do?

What you will be asked to do will vary between studies. You may be asked to complete a questionnaire, take part in a telephone interview, a face to face interview, a workshop or focus group. In some studies you may be asked to try out a new treatment. An example of a McPin study was when we wanted to know how women decided whether or not to keep taking medication for their mental health while they were pregnant. To find out, we recruited participants who were women with this experience. During the interviews, they were asked about advice they’d received, what had worried them and what decision they made.

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Who can participate in research?

Different studies will have different criteria for who they need to recruit. This can be general, for example, “People who volunteer in Mind charity shops”, or more specific, “Females aged 18-25 who have received cognitive behavioural therapy for bulimia”.

Do I need experience of a mental health condition to take part in research?

Not necessarily. Some studies will be looking to recruit people with personal experience of a specific mental health condition. However others will be looking for other sorts of experience, such as women who have used perinatal NHS services, or they will want to recruit a mix of people.

What information will I get before I take part?

You should be given an information sheet outlining exactly what the study is looking at and what you will be asked to do. It should also tell you what information, data or samples you will be asked to give and how these will be used. The researchers should also explain any risks connected to taking part.

If you are happy to participate, you will be asked to sign a consent form, which says that you are agreeing to take part in the study. Normally you will be able to withdraw from a study at any time without giving a reason.

Is my information confidential?

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Normally all the information you give as part of a study is confidential and often data is anonymised. For example, if you filled in a questionnaire, it will be labelled as “Participant 23” not “John Smith” so it is impossible for people looking at it to know who filled it. The information sheet should make it clear what information will be collected and how it will be used.

Is there a chance confidentiality could be broken?

In rare circumstances researchers may break confidentiality, usually to protect you or somebody else from harm. You should be told what these circumstances are before you give consent.

Will I get to hear about the results?

In the majority of cases, you should be able to find the results when the study is published. In some cases you may be sent a copy or a summary of the findings.

Can I take part in research in other ways?

Yes. Participating in a ready made project is only one way of contributing to the research process. If you want to use your personal experience to influence what research questions are asked and how the study is designed in the first place, you may want to consider doing research involvement.

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

EMAIL thomaskabir@mcpin.org

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STILL NEED HELP? Check out these organisations

People in Research

National Service User Network (NSUN)

Be Part of Research

If you cannot find anything for you, take a look on social media and at appropriate condition-specific charities such as Beat for eating disorders or Autistica for autism.