Public and Patient Involvement
in Theory and in Practice
Thank you for showing an interest in this project. Please read this information sheet carefully before deciding whether or not to take part. If you decide to participate, thank you. If you decide not to take part there will be no disadvantage to you of any kind and thank you for considering this request.
What is the aim of the project?
My name is Kath Maguire, currently I am studying as a PhD student with the Peninsula College of Medicine and Dentistry. This project is part of my study.
Public and patient involvement (PPI) has become an important ingredient in health and social care research. People are involved in a number of ways, reviewing research proposals, commenting on protocols and sitting as a panellist on funding boards. 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. 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.
What types of participants are needed?
If you are in England, involved in any of the many different PPI roles listed above, or in some other way that you think is relevant then I would like to hear from you.
What will participants be asked to do?
Complete a survey
The first part of the project 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 will be available online, by email or as a paper form. It 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 later parts of the project. 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.
The survey will also ask five questions about your PPI activities and seven questions based on some of those in the census.
Time Commitment
The survey will take approximately fifteen minutes to complete
Take part in an interview
Some people who have said they are interested will be invited to take part in an interview about their PPI activities. These will normally be face to face, although some might be over the phone if that is better for you. This part of the project will mainly involve people in the South West.
In the interview there are eleven set topics for me to ask about. But this project involves using open-questions, so exactly what questions are asked will depend on the way the interview develops.
Time Commitment
The length of time interviews will take will depend on how much the person being interviewed wishes to say, as a guide I am allowing approximately one to one and a half hours.
Keep a diary
Some of the people involved in different sorts of PPI activities will be asked to keep a diary of those activities. This will involve a sheet on which to record the number of meetings, phone calls, emails about PPI and either a written/electronic logbook or a small audio recorder that can be used to record how they feel those activities have gone. Again, if you express an interest in this part of the project and it later turns out to be inconvenient, or if you start to keep a diary and find that you do not want to continue there will be no disadvantage to you of any kind.
Time Commitment
This will very much depend on the individual. Clearly the more activities you are involved in the more time it will take to record them. I would not expect anyone to spend more than five to ten minutes on any individual diary entry unless they found it useful for themselves and wanted to write more. The length of time you will be asked to keep the diary for will depend on the frequency of your PPI activities. I hope that each diary will include information about at least three meetings or pieces of work undertaken.
Workshops
Because this project is intended to capture the views and experiences of people who take part in PPI there will be an opportunity for people who have expressed an interest to take part in one of a series of workshops. These will look at the research findings up to that point using fun and creativity rather than dry reports and presentations.
The plan is to hold three of these workshops, one in Exeter, one in Plymouth and one in Cornwall.
Time Commitment
Workshops will each be one day (about five or six hours, including a lunch break).
Can participants change their mind and withdraw from the project?
You can withdraw from the project at any time. There will be no disadvantage to you of any kind and you don’t have to give any reason.
What information (or data) will be collected and how will it be used?
There are twelve questions in the survey, five are about your PPI activities and seven are adapted from the 2011 census form. Some answers will help shape the theories; others will be compared with national statistics.
Topics for the interview will be:
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· How you have been involved in a PPI role in health research – what groups/roles/activities |
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· How long you have been involved |
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· How you became involved or were recruited |
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· Why you agreed to become involved |
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· Whether you intend to continue to be involved |
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· What the benefits your PPI involvement have been |
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· What the dis-benefits or costs have been |
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· Whether your involvement has changed how you feel about research |
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· Whether your involvement has changed how you feel about yourself |
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· What you think could make involvement easier/better |
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· Any learning you feel you have gained from your involvement |
It is worth underlining that this project involves using open-questions, so exactly what questions are asked will depend on the way the interview develops. Because of this, although the Ethics Committee has looked at the topics we will discuss in the interview, the Committee has not been able to look at exactly what questions will be used.
If you agree to be interviewed but at any time you feel unsure or uncomfortable you can decide not to answer any or all of the questions, you can choose to skip a whole topic or you can withdraw from the project altogether. Choosing to skip parts of the interview or withdraw from the project would not cause any disadvantage to you of any kind, and it would be absolutely fine for me too.
Once the interviews have been written up you will have an opportunity to check them to make sure they are accurate and you can ask for anything that could identify you personally is removed before information is shared further or published in any way. This might include removing names of individuals, groups or places that you would prefer to remain confidential. Some of the stories and ideas you do share may be used to help us discuss practical and theoretical issues involved in PPI through an online discussion forum or in the workshops.
Information from the diaries will be treated in the same way as the interviews.
People who take part in the workshops will receive a short feedback report on the day.
Results of this project may be published but none of your data included will be individually identifiable unless you have first seen it and agreed to publication.
Participants in this project will be able to receive updates and be provided with a copy of the final report.
The data collected will be securely stored in such a way that only the researcher and her supervisors gain access to it. Names and contact details will be stored separately from survey answers, interview scripts and diaries.
What if I have any questions?
If you have any questions about our project, either now or in the future, please feel free to contact either:-
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Kath Maguire Research Student Institute of Health Service Research Peninsula College of Medicine & Dentistry Veysey Building Salmon Pool Lane Exeter EX2 4SG Email: kath.maguire@pcmd.ac.uk |
Andy Gibson PhD Research Fellow Patient and Public Involvement Team PenCLAHRC Peninsula Medical School Veysey Building Salmon Pool Lane Exeter EX2 4SG Email: andy.gibson@pms.ac.uk |
Complaints
If you have any complaints about the way in which this study has been carried out please contact the Chair of the Peninsula College of Medicine and Dentistry
Dr Oonagh Corrigan
Senior Lecturer in Clinical Education Research
Peninsula College of Medicine and Dentistry
C307 Portland Square
University of Plymouth
PL4 8AA
Email: oonagh.corrigan@pms.ac.uk
This project has been reviewed and approved by the Peninsula College of Medicine and Dentistry Research Ethics Committee