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Patient and Public Involvement (PPI) in Research – what does it involve?

The aim of using PPI in this Lancaster University study is to get the views of patients and family members to ensure that the research they undertake is relevant to people who are affected by a life-limiting illness.


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The aim of the research is to confirm the format and content of the Attitude to Health Change scales (AHC) and their usefulness for patients and family members who are caring for them. It also aims to explore how the scales might be used more widely in palliative care – thereby providing more effective support to a greater number of people.

What can you offer?

Quite simply your experience. Your experience of receiving counselling or emotional support where you were asked questions from the Attitude to Health Change scale (AHC). Your role will be one of contributing to the research process as an advisor.

Your advice and opinion may be sought on:
  • The research proposal – its aims, goals and methods
  • Research questions – what questions are asked and the way they are phrased
  • The best way of contacting people to ask them to take part in the research
  • How to get consent from those taking part in the research
  • How to collect information from those taking part in the research
  • Identify if there are any barriers to people taking part in the research
  • Consideration as to whether there are there any emotional or personal safety issues for people taking part
  • Help to write a summary of the research in plain English that is easier for people to understand
What will happen if you agree to be involved in the PPI process with Lancaster University?
  • You will be invited to be a member of a PPI group for this research project
  • In the current situation where face to face meetings are not possible, we will arrange an online meeting with you and five or six other people who have agreed to participate in the PPI group
  • The meeting will be scheduled for a time that is convenient for you and other members of the group and will last for about 1 to 1.5 hours
  • You will be provided with information about the proposed research study and an outline plan before the meeting.
  • After the meeting you will have feedback from the research team.
  • You will receive £25 as reimbursement for the meeting.

This invitation to be part of a PPI group is to help in planning the research. We value your potential contribution to this important study and would be pleased to hear from you if you would like to participate or if you would like to ask some questions before agreeing to take part. Please get in touch using the contact details below.

The research will be undertaken at the International Observatory on End of Life Care, Lancaster University. The research team includes Professor Catherine Walshe, Dr Linda Machin, Dr Amy Gadoud, Dr Jason Boland, Dr Bernadette Bartlam, Ms Lesley Dunleavy.

If you would like to take part or have any questions about the research project, please contact Fiona Pope, St Barnabas House Counsellor, email: Fiona.Pope@stbh.org.uk or telephone: 07775 941081.