Patient & Public Involvement in Research
Connecting Oxford’s researchers with cancer patients of the past, present & future
Involving the public in cancer research can help to guide the direction of medical research in a way that benefits those that need it most: cancer patients.
This is why Public & Patient Involvement (PPI) in cancer research is so important. As someone whose life has been affected by cancer, the public can offer cancer researchers and clinicians a unique and valuable insight into the needs of patients and people affected by cancer.
Involving people affected by cancer in the development of research and early phase trials will allow Oxford’s research to progress to reflect the needs of the patients, as well as tackling cancer with world-leading science.
Cancer researchers at Oxford study all aspects of cancer, from testing new treatments and improving quality of life to developing new screening techniques and improving cancer prevention.
The Public & Patient Involvement work that Oxford Cancer supports can help cancer researchers in Oxford in various ways, such as:
- Assisting researchers on grant applications
- Reviewing patient information leaflets
- Producing clinical trial awareness videos
- Sitting on steering groups for clinical trials
- Participating in patient and carer focus groups
- Offering a translational angle to research
For examples on how our PPI has helped to benefit and guide cancer research in Oxford, please see below.
The Oxford Cancer Research Patient and Public Advisory Group aims to provide a lay perspective through consultation with people affected by cancer, on a variety of cancer research projects.
Our involvement can be across the research cycle from concept, through trial design and delivery, to dissemination of results, working in partnership with scientists, researchers and clinicians.
Together we aim to improve access, relevance and understanding of cancer research, to benefit patients and their families now and in the future.
Patient & Public Involvement Makes a Difference
Examples of how this group has made an impact on Oxford’s cancer research can be found below.
Project 1: Early detection of sepsis in chemotherapy patients
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.
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.
Project 2: Funding support for patient wellbeing research
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.
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.
If you would like to be involved in Patient and Public Involvement at Oxford the you can do so below.
If you are a member of the public or a patient that would like to contribute their experiences, knowledge and ideas to cancer research at Oxford, then please email our PPI Lead Nikki Hayward using the link below. Patients & public involved in helping researchers to develop their proposals have access to the ECMC PPI Reference Guide for the public.
If you are a researcher who would like to harness the benefits of Patient and Public Involvement for your own project, please download and submit a project proposal form via the link below. You can find out how to best harness Patient and Public Involvement for your work using the CRUK PPI Toolkit for researchers here.
We have a large panel made up of members of the public who’ve had their lives impacted by cancer in some way. This panel regularly contribute their experience and knowledge of cancer to researchers in Oxford, to help improve the translational impact of their work.
If you are interested in joining the panel or using PPI in your research, please use the links above. You can learn more about some of the patients and members of public on the Oxford PPI panel below, each of their profiles include information about their individual experiences and areas of interest.