Patient and public involvement in research: in this Primary Care Unit case study, we learn that the CanTest Collaborative has had PPI at its heart from the outset, aiming to improve the early diagnosis of cancer in primary care settings
Summary: The CanTest Collaborative is a great example of how to include patients and members of the public both in the early planning stages and at the strategic levels of research. PPI representative Jenny Bovaird describes working with CanTest researchers as being an overwhelmingly positive and rewarding experience.
The CanTest Collaborative is an international team of primary care cancer researchers working on early detection and diagnosis of cancer. Cambridge’s CanTest research, based at the University’s Primary Care Unit, focuses on developing strategies to detect symptomatic cancer earlier using biomarkers, technological devices, smartphones and clinical decision support. Projects aim to understand patient pathways, and to develop and evaluate interventions for GPs to use to improve the detection and diagnosis of cancer. There are currently 17 Cambridge-led projects which use a variety of methods such as systematic reviews, qualitative interviews, mixed-methods patient studies, and analysing primary care data.
How patients and members of the public got involved
One patient and public involvement (PPI) representative, Margaret Johnson, has been involved from the application stage. Margaret provides input at the highest strategic level of the research programme as a named co-investigator, PPI lead and member of the steering group.
CanTest also has a panel of PPI representatives recruited from the four CanTest UK University locations, which Margaret chairs. The panel is a mix of individuals with personal experience of cancer, either as a patient or family member. The panel members were recruited either via having worked with one of the Investigators previously or from other local PPI forums.
PPI panel contributions include:
- Reviewing and co-authoring academic papers. For a recent CanTest study investigating the impact of COVID-19 on cancer assessment in primary care, Margaret provided input on the qualitative interview transcripts, preliminary findings, and the draft paper.
- Margaret attended conferences on behalf of CanTest such as SAPC (Society of Academic Primary Care) and Ca-PRI (The Cancer and Primary Care Research International Network).
- PPI representatives are invited to attend and present at the annual CanTest International School, a three-day programme of talks and group sessions. This provides a networking opportunity with the wider CanTest partners.
- PPI representatives are invited to “CanTest Mondays” – virtual sessions in which the team present current projects and engage in knowledge sharing. PPI representatives take part in the discussions and provide their patient and/or public perspective as well as comment on any methodological issues.
- Providing direct input into steering group meetings.
- Reviewing study protocol and written materials, including participant information leaflet, consent forms and interview schedule. Critical review by PPI representatives often leads to significant changes, for example, the rewording of a project title after the PPI team deemed it too technical for a lay patient.
- Co-writing lay summaries for individual research projects. For example, PPI representative Jenny Bovaird amended the lay summary on a recent systematic review to make it easier for a lay audience to read and understand.
- Writing blogs about their experiences working with CanTest (see Pete Wheatstone’s article about working with the Leeds team and Sharon Cooper’s article about her work with the Exeter CanTest team)
The impact of PPI on CanTest
PPI has been instrumental in shaping CanTest research processes and outputs including materials for the studies and research publications. In particular, PPI helped make the research more acceptable and accessible to the target patient group. One such example was the renaming of a diagnostic toolkit on a patient information leaflet, entirely driven by PPI representatives. “They asked that we rename the toolkit from “faecal immunochemical test” to “poo test”, which was much easier for patients to understand, and will, we hope, increase the chances of public engagement with the study”, said Dr Valerie Sills
“Involving patients and the public makes the research seem more real. It helps the researcher feel connected to what they’re trying to achieve. Hearing how members of the public react to the research brings home what we are trying to do.”
Dr Valerie Sills
Overcoming challenges with PPI
With the nature of this research area, people can face challenges due to their own healthcare issues throughout the course of the project, so the team emphasises that it is important to be flexible and sensitive to the needs of PPI representatives. Also, CanTest provides support and resources to increase the accessibility of activities, such as arranging travel.
Top tips for researchers from the CanTest team
- Think about PPI as early as possible – involve PPI representatives early on in grant applications and research plans, rather than it being a last-minute ‘tick box’ exercise.
- Personalise documents – add photos of the research team and/or nominated contact to your PPI information sheets to make the project seem more approachable.
- Ditch the jargon – make sure the language you use is accessible and easy for the target audience to understand.
In their own words…
Jenny Bovaird, PPI representative for CanTest
What motivated you to get involved with CanTest?
It was a great opportunity to apply my knowledge and skills from a professional career in healthcare, as well as my personal experience with cancer, to a worthwhile project. A large part of my current role with PPI is to suggest changes to documents for patients so that the language is simple and easy for patients to understand.
Did you experience any challenges whilst working on this project?
CanTest is comprised of multiple projects so it took some time to understand how my role fits into the wider research environment and what was expected of me. It was also more difficult getting to grips with joining an already established group since we weren’t able to meet in person due to coronavirus restrictions. That being said, the researchers have been fantastic at keeping us updated on the projects via email.
What have you enjoyed about working with researchers on CanTest?
It makes me feel I can have a positive impact on the research. The team listen to me and indeed us all and are willing to take my contributions seriously. It is heart-warming to see researchers doing valuable work to improve the experiences and outcomes for patients, and I enjoy listening to their enthusiasm for the work!
On a personal level, it has been a really rewarding experience that allows me to make use of my knowledge and skills. It forces me to keep up-to-date with the latest research and has helped to keep me sane in these last few months.
What advice would you give to researchers and members of the public who are new to PPI?
Research projects can sometimes be intimidating to members of the public. Researchers should take care to reassure people that all input is valid – there are no right or wrong answers with PPI. PPI representatives should never feel embarrassed if they don’t understand something – this is in fact valuable information because it indicates that the research needs to be further adapted for the target audience. I would encourage anyone who is unsure about joining a PPI project to talk to a member of the research team one-to-one for some reassurance.
Contributors: Professor Fiona Walter (Director) and Dr Valerie Sills (Programme Manager) on behalf of the Cambridge CanTest team based in the Primary Care Unit, University of Cambridge; and Margaret Johnson and Jenny Bovaird (CanTest PPI representatives) all contributed to this case study. The case study was prepared by Miranda Van Emmenis.
Please also see the Primary Care Unit’s Resource page on PPI for more case studies and examples of PPI in action.