Public and Patient Involvement in Theory and in Practice 1

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My name is Kath Maguire, currently I am studying as a PhD student with the Peninsula College of Medicine and Dentistry. Over the past few years I have taken part in public and patient involvement (PPI) in a number of ways, reviewing research proposals, commenting on protocols and sitting as a panellist on funding boards. Through these activities I have met a lot of different people doing similar things and who have each had their own reasons for becoming and remaining involved. They include members of research networks, steering group members, project advisors, lay researchers or members of ethics committees. There are many different PPI roles, some involve working in groups while others mean sitting alone with papers or a computer screen. Sometimes critics of public and patient involvement have labelled those of us who have become very involved as ‘the usual suspects’, implying that we do not represent a sufficiently diverse cross section of society. But little research has been done to look at why some people become involved while others are put off or drop out. This study is intended to start to bridge that gap. It will look at why people became involved in health service research and what keeps them interested or drives them away. It will ask people what PPI is about for them. It will also look at how PPI might fit with social theories, and how those theories look in the light of the experiences of people taking part in PPI in health research. The first part of the study is this short survey of people involved in PPI. It will be used to get some background information on what participants have in common and what differences there are between them. The survey is in two halves, the first will ask for your name, to ensure that each person is only included once, and at least your postcode, to show how many parts of the country it has reached. It will ask you whether or not you are interested in taking part in a more in-depth interview about your PPI activities, keeping a PPI diary, taking part in a workshop or joining an on-line discussion forum. You could also choose to receive updates about how the study progresses. If you choose to give your contact details and answer ‘yes’ to any of these you will be able to change your mind at any time, if it turns out not to be convenient after all. There are twelve questions in the second part of the survey, five about your PPI activities and seven adapted from the 2011 census form. Some answers will help shape the theories; others will be compared with national statistics. Your answers will be treated as confidential and will be stored separately from your name and contact details, which will only be used to keep in touch with you about this study. A full participant information sheet is available from: http://home2.btconnect.com/rebalance/about.html. It will open in a new window.

or by emailing kath.maguire@pcmd.ac.uk

Please contact me if you have any questions about the study.