Making public and patient involvement in research a reality in Precision Oncology Ireland
Written by: Dr. Fiona Lanigan
Since the launch of Precision Oncology Ireland (POI) in November 2019, we have always strived to involve cancer patients and their families in our research as much as possible. During the patient forum held at the launch event, participants spoke of how they felt that being involved with cancer research gave them hope, a feeling of some power over their condition, and also the opportunity to give back to research, which in some cases had been instrumental in their treatment and recovery.
However, implementing public and patient involvement (PPI) in research at a practical level is not without its challenges. Depending on the research project, it can sometimes be difficult to understand how best to involve patients in the research in a meaningful and non-tokenistic way. This is particularly true for research projects at an early stage of their development, where the research may be focused on understanding how a particular process drives a tumour cell to grow, rather than developing a specific treatment for it, which would come at a later stage.
Another challenge we came across early on when developing plans for PPI was the fact that the research projects within POI had been defined when the funding proposal was submitted. Obtaining research funding can be a long drawn-out process, and the foundation of the POI research projects had been set out several years previously following extended discussions between academic researchers and partner organisations. Each of the research projects within POI, which are comprised of a mix of early-stage and later-stage research, are co-funded by Science Foundation Ireland plus an industry or charity partner. If the direction of this research was already defined, would it be fair for us to invite patients to be involved at this point, and give of their time, unless there was scope for us to implement the changes they might suggest?
It was with these questions, and more, in mind that we first heard about an initiative led by the Patient Voice in Cancer Research (PVCR). The PVCR was established in UCD in 2016 and aims to facilitate dialogue between patients and researchers so that the lived experience of cancer patients can enrich, inform and shape the research process.
They had planned an event in association with the UK-based National Cancer Research Institute, to be held in Galway in February 2020, called the ‘Dragon’s Den’. The idea behind this format was that researchers would apply to the PVCR to have their proposal or idea heard by a team of ‘Dragons’ – those with a lived experience of cancer who had applied to participate in the initiative.
Who better to advise us on how to involve patients in our research but the patients themselves? We drafted a PPI strategy as a starting point for our discussions, and set off for Galway to present it to the Dragons, hoping that they wouldn’t be too fearsome!
In those golden days pre-COVID, the PVCR events were a hugely social occasion, and we enjoyed the informal interaction with attendees and the buzz of the event, before sitting down with our team of eight Dragons.
We started our pitch by explaining why we as a research programme wanted to involve patients in our research: to improve the relevance of our research to patients, to define areas of unmet need for future research projects, and most of all, to make patients, who are ‘experts by experience’, our partners in research. We discussed the focus and scope of our research projects, and the spectrum of activities we hoped to participate in, from patient engagement (communicating to patients or imparting information) to patient involvement (actively partnering with patients in developing research). We outlined the questions and challenges that we had been grappling with in developing our PPI strategy, most of all the fact that we wanted our PPI activities to be achievable, worthwhile, and mutually beneficial. We then handed the floor to our 8 Dragons for their feedback.
The first key point made was that PPI is a two-way street. We as researchers may often feel that we are asking too much of patients, but they can say no if they do not want to be involved - we should not be afraid to ask. That said, our Dragons wanted this involvement to add value to the research process and not be tokenistic. One suggestion to ensure contributions were meaningful was to include patient representative(s) on the Governance Board, where they could bring not only their lived experience as a cancer patient to the table, but also their life skills and career experience. The difficulties in incorporating PPI into pre-existing projects was acknowledged, but this process is about developing partnerships in the longer term, so that future research programmes in the pipeline take patient input into account from the start. A suggested starting point was to hold a ‘POI research showcase’ where POI research projects were presented to a public and patient audience in an accessible way, allowing them to gain insight into the ongoing work and provide input from their perspective where possible. This may then lead to more in-depth partnerships over time.
The group also suggested practical ways that patients could be involved in promoting the importance of research to the wider public, such as partnering on community engagement events, and participating in the dissemination of research outputs. On a practical level, the importance of adequate compensation to ensure patients are not out of pocket due to participation in PPI activities, and acknowledgement of contributions in grant proposals, research publications or presentations, where appropriate, were highlighted. The point was also made that PPI participants were often a highly pro-active and self-selecting group, and more effort should be made to engage with seldom-heard groups and minority communities by attending or organising smaller local events targeted at these specific groups, or facilitating online events for those unable to travel.
We could not have foreseen that this would be the last time for a long while that we would meet other people to physically sit around a table, and we enjoyed the experience enormously, as well as gaining some insights into how best to map out our PPI strategy. Feedback from the Dragons to the organisers was also very positive, and in general this format of event has a lot to offer in terms of bringing patients and researchers together to facilitate PPI.
Based on the advice received, we have implemented some changes to our programme, outlined below. On top of this are the enforced changes to all our lives following the spread of COVID worldwide, which has brought some surprising benefits in terms of accessibility, as well as the obvious downsides.
- We are planning to hold a virtual ‘POI Showcase’ in 2021, which will be co-developed with patients. This aims to bring POI researchers and patients together to discuss and provide input on aspects of POI research, or proposed projects for the future. We hope that similar events in the future can be held in person!
- We have included patient representation on the POI Governance Board with the appointment of Jan Rynne, a hugely experienced patient advocate who will bring her unique insight to the Board.
- The Dragons suggested that POI should engage with the public by organising lay talks relating to POI research. Since February 2020, we have held 4 virtual public research talks in collaboration with various charity partners and patient advocacy groups.
- Based on the suggestion that more efforts be made to engage with under-represented groups, POI have worked together with the leaders of selected minority community groups to co-create a programme of engagement activities for Science Week 2020, funded by Science Foundation Ireland (For more info, see http://www.precisiononcology.ie/engagement/invisiblespectrum/) . We hope that this will be a starting point for further activities aimed at engaging minority groups in our research.
- We have also included in our publication policy that the contribution of PPI participants to research projects should be acknowledged in all research outputs going forward.
We would like to thank all of the PVCR Dragon's who contributed their insight and patient experience to help develop our PPI plan. If you are a patient or interested stakeholder (patient advocate, family member, carer, health care professional, policy maker) interested in sharing your experience and expertise and becoming involved in PPI in Precision Oncology Ireland, contact email@example.com, or contact firstname.lastname@example.org to find out more about the Patient Voice in Cancer Research.
About the Author: Dr. Fiona Lanigan is the Communications, Dissemination and Public Engagement Manager with Precision Oncology Ireland