Clinical FeaturesOncology

Embedding Public and Patient Involvement in Cancer Research across Ireland

Written by Dr Claire Kilty, Dr Rebecca Amet, Nikolett Warner – Irish Cancer Society

As the largest voluntary funder of cancer research in Ireland, the Irish Cancer Society is committed to putting patients, survivors, families, carers, supporters and the public at the very heart of what we do. To do this, we work directly with people affected by cancer to ensure that they are embedded as partners within the cancer research processes in Ireland through public and patient involvement in research (PPI).

A major priority of the Society is making sure that cancer researchers around the country understand what PPI is and the value of PPI in research. The Society work with all researchers from traditional lab-based scientists to data scientists and doctors, and even nurses and allied health professionals; helping them incorporate PPI into their research projects.

PPI in cancer research involves carrying out research in partnership with people affected by cancer, ultimately whereby all contribute collaboratively in varying amounts towards the research. With true PPI, each voice is of equal importance in the research process.

This partnership is important for many reasons: firstly, it ensures that the research we are carrying out is relevant and meaningful to those who are affected by cancer. Importantly, by promoting equity in the research decisions, it can increase the trust between people who are affected by cancer and the research community, as well as improving interactions between patients and health care professionals. Being involved in research can also create a sense of empowerment and value for all involved. In terms of the research community, it ensures that researchers are made aware of the true meaning of their research; it gives them a different perspective to consider, and helps them understand the real-world barriers and enablers of the research that they are proposing.

Researchers can embed PPI at any stage of the research cycle, from the development and design stage of the project, to the grant application stage, to inputting directly into the methodology and direction of the research project, to helping interpret the results, and dissemination and communication of the results. Ideally, people affected by cancer should be involved as PPI contributors as early as possible in the research process, working together with researchers to identify and prioritise the initial research questions i.e. long before that grant application is due.

Key to building this partnership is ensuring trust and respect. This includes having empathy and understanding for each other, communicating with respect and honesty, putting time in to developing the PPI relationship, as well as listening to the PPI contributor and making sure that their voice is heard. Managing and setting the expectations of both the researcher and the PPI contributor from the onset is a vital part of building this PPI relationship, as it ensures that everyone is clear what their role in the project will be. Completing a role description for the PPI contributor and the researcher is a good way of providing this clarity. In addition, following up with PPI contributors to communicate results and the impact of their involvement throughout the research project and afterwards is an important part of maintaining trust and respect. A piece of feedback that the Society continually receive from PPI contributors working with researchers is about the lack of follow-up and communication about how their contribution was utilised.

Researchers need to be flexible when it comes to their PPI methodology. Not all PPI contributors will feel comfortable or be able to contribute in a standard group setting, whether it be online or in person. Genuine involvement means making sure that we accommodate PPI contributors to share their voices in ways that works best for them. Researchers also need to have the ability to change and adapt when it comes to PPI, they need to be able to work with PPI contributors to reflect on things that haven’t worked well, identify difficulties or challenges they had with including PPI, so that their PPI methodology can be refined and improved as required.

Cancer impacts the lives of everyone, unfortunately, no one is immune to the devastation it can cause. In order to achieve equitable access to world-class treatment, care and support; everyone must have a seat at the table. Historically, those from underserved and minority groups often have poorer outcomes from cancer than the general population. It is important that the benefits of cancer research reach everyone, especially people from these communities who might struggle with access to care and services. Including PPI contributors who are members of underserved communities ensures that the scientific research agenda is more equitable and impactful to their needs 1 .

Inclusion at the planning stage guarantees that the research topic is relevant and will include individuals from all backgrounds; whilst including inclusive PPI at the dissemination stage will ensure that those who may benefit from the research findings will know about it. Some contributors may not have the same access to resources to participate in PPI. In these instances, researchers must be proactive in accommodating these individuals, for example, travelling to the contributors or creating bespoke methods of research communication. This may seem initially challenging, however, it is important to remember that that this can be a dynamic process whereby co-designed strategies for more inclusive research can be developed. This investment in inclusion will likely result is more just, equitable and impactful cancer research for all.

Finally, the Society advises researchers to spend time developing their PPI network. A growing number of organisations are developing best practice in PPI in Ireland and are there to offer support to researchers. Health Research Charities Ireland have an excellent toolkit available guiding researchers on beginning a PPI relationship 2 . The National PPI Ignite network, and associated seven lead university sites offers supports to scientific, health, and social care researchers within academic institutions in Ireland, and are a vital resource for PPI. At the Irish Cancer Society, we are always willing to provide advice to cancer researchers during their PPI journey, and we advise researchers to get in touch with us on if you have any PPI related questions.

References available on request

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