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Involvement in Research

There are many different ways to take part in research, one way is as a participant. Another way is as to become involved in research by using your expertise from experience to help advise researchers. This is where someone helps influence and develop research by contributing their personal rather than professional experience. For example, experience of having a particular mental health problem, using services, or being a carer.

What is the difference between participation in research and involvement?

  • When you are a participant you are the subject of the research which has already been planned and developed. You contribute personal information to be used as data.
  • When you are involved with research you take an active role in helping to design and influence it. You contribute what personal experience you feel is relevant or helpful to develop the research.

Being involved in research in this way is known as Public and Patient Involvement (PPI) and is at the heart of our work at McPin. jm140527_poole_414

Why is it important to get involved in research?

It is important because those who have expertise from experience bring a different knowledge and perspective that others do not have. They have an important role in making sure that the relevant research questions are asked, helping to ensure participants have a positive experience, and help challenge researcher assumptions. It is not only a great opportunity to improve research and its impact, but can also be very personally rewarding.

If I did choose to get involved in PPI what kind of thing would I be doing?

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

 

Example:

  • You are asked your opinion on materials given to participants ( e.g. information sheet and consent form)

You may point out things such as there is too much technical jargon, or some of the words are stigmatising. You’d then have a chance to propose alternatives and edit the materials.

E.g. Change “schizophrenics” to “people with schizophrenia.”

 

Example:

  • The proposal for the research is to interview service users with a particular mental health problem (e.g. bipolar) about their experiences.

You may comment that you need to reassure participants that the services they are using will not know what they have said, and this will not affect them receiving treatment.

 

Example:

  • The researchers think that the most interesting point made during interviews that they conducted is, (just for an example) how easy it was for participants to access services.

As someone with experience of that treatment you may comment that what you thought was most interesting was what they said about their relationship with their therapist, as from your own experience this made a massive difference to your response to treatment.

 

PPI at McPin jm140527_poole_084

We have developed a Public Involvement in Research programme over recent years which includes working with a range of partners and our advisory group to promote ‘expertise from experience’ in research and learn more about how to deliver PPI initiatives. See our current projects for examples of our PPI programmes and their role in our research projects.

Where can I find out more about PPI?

If you want to find out more about PPI, Involve – which champions PPI in the NHS – has produced a number of guides.

How do I get involved in PPI?

If you want to know about our opportunities to get involved with research at McPin please email thomaskabir@mcpin.org. You can also sign up to our bulletin. The bulletin comes out quarterly and outlines research involvement opportunities both at McPin and at other mental health organisations.

We also regularly post opportunities on Twitter (@McPinFoundation) and our Facebook Page

Below are other organisation’s research involvement opportunities. If you cannot find anything for you, you can also look on condition specific charity websites (e.g. the eating disorder charity Beat) and on social media.

People in Research www.peopleinresearch.org

National Service User Network (NSUN) weekly newsletter & Survivor Researcher Network newsletter  both available from www.nsun.org.uk/news/ebulletins