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The Oxford PPI Panel has been used in the past to positively feed into Oxford's cancer research community. Examples of how this group has made an impact can be found below.

Aim of research:

The aim of the research was to get a better understanding of the early signs of sepsis in people who are having chemotherapy, and to identify who is at highest risk of sepsis.  A better understanding of the early signs of sepsis will help patients and their families to look out for these signs while they are having chemotherapy treatment, so that they can get help quickly.

Research need:

The research required feedback on the patient facing aspect of the project. The researcher wanted to find out what symptoms people on chemotherapy experience when they are at home, and which of these symptoms can be used to identify the early stages of sepsis. The plan was to ask patients to keep a daily diary throughout their chemotherapy to include questions about which symptoms (such as nausea, or feeling tired) they were having that day, and to ask them to record their temperature, blood pressure and heart rate. Patients were also to record if they saw a doctor or went to hospital because they were feeling unwell.

How PPI was used:

The researcher contacted the Oxford PPI lead, Nikki Hayward, to arrange to present to the PPI panel at a face to face meeting. She presented the project, and asked questions to find out what the panel thought were important outcomes to consider and if there were other aspects of suspected or documented sepsis that patients thought were important. She also asked for feedback on how best to recruit and retain patients on the study – including how to make the research “patient friendly” at a time when patients are often stressed and have a lot of other things going on.

Feedback was provided by the panel during discussion of the project at the meeting. The researcher was also given further feedback via email post the meeting, specifically with regards to how to write a lay summary, and was able to rewrite her proposal with this advice in mind. Further feedback was provided on the rewritten proposal from interested PPI panel members who she had direct contact with.

How PPI helped the project:

The researcher was able to write her lay summary in a much more accessible format for patients and the public following the feedback. She was very grateful for the input and said how much this had helped her to move forward with the project.

Aim of research:

To evaluate whether testing for cancer can be carried out in a way that the benefits of early diagnosis outweigh the harms, such as over diagnosis, false alarms, costs, anxiety and distress to the patient.

Research need:

The researcher was putting together a post-doctoral fellowship application, for submission to the National Institute for Health Research (NIHR). If successful, this would provide funding to carry out the proposed research for three years. The researcher wanted to involve patients and the public at the design stage of the research and also to consult with a focus group throughout the duration of the fellowship programme.

At the initial stage, the researcher wanted feedback from the PPI panel on the aims of the study and the application generally, and then specifically on the potential harms from the pathway.  He suggested themes for the discussion ahead of the meeting, but was also keen for the PPI panel to raise additional items that they felt were important.

How PPI was used:

The researcher attended an Oxford PPI panel meeting and presented his research proposal. He then asked pre-set questions to the group and minutes were captured by the group administrator.

How PPI helped the project:

The questions asked were answered from the perspective of the patient and provided information that the researcher had not considered. As a result he was able to submit a stronger proposal for funding.