Public and patient involvement
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What is Patient & Public Involvement (PPI) at the Irish Cancer Society?
The Irish Cancer Society is committed to putting patients, families, survivors, supporters and the public at the very heart of what we do. In keeping with this commitment, we are working to embed Patient and Public Involvement (PPI) in our research processes. There are many different ways people with cancer can interact with research, specifically by means of participation, engagement, and involvement (1).
- Participation: A person with cancer may be recruited into, and take part in, a research study and provide data of some form.
- Engagement: Engagement is when the researcher communicates and shares research information, for example, at science festivals, public talks, television programmes, or radio.
- Involvement: Involvement is distinct from participation or engagement. Where participation and engagement are conducted ‘to’, ‘about’, and ‘for’ people with cancer, involvement is ‘with’ or ‘by’ people with cancer. People with cancer can be involved at any stage of the research process, from conceptualisation to dissemination.
Why is PPI important?
PPI is becoming increasingly common in research. The Irish Cancer Society is committed to expanding the involvement of those affected by cancer in the research that the Society funds, and in the funding decision-making process. This commitment is reinforced by the Irish Government's National Cancer Strategy (2017-2026) (2), which highlights:
“Patient involvement in cancer research improves the relevance of research questions, the quality, acceptability and feasibility of research conduct and the likelihood of uptake of research outputs.”
PPI creates a partnership between people affected by cancer and researchers. It is more than a tokenistic gesture to comply with policy; it can provide a real and substantial benefit to all stakeholders. While not without its challenges, PPI can:
- Promote a sense of empowerment and value among patients (3).
- Enhance patient trust in researchers (3).
- Improve researchers’ insights into their own research area (3).
- Help researchers identify barriers and come up with solutions to research (3).
- Increase trust and acceptability of research findings in the patient community (3).
- Inform the provision, access, and location of healthcare services (4).
- Improve the dialogue between healthcare professionals and patients (4).
Specific to the cancer setting, PPI may be used by patients as a resource, to make sense of living with a chronic condition (5). People with cancer report feeling enhanced knowledge and skills from taking part in PPI, as well as feeling they contributed to research by providing a lay perspective (i.e. practical knowledge about being a patient with cancer) (6).
As such, PPI can be a valuable tool in the research process for both patients and researchers, and the Irish Cancer Society aims to expand its PPI work in the coming years.
The Patient Voice in Cancer Research
The Irish Cancer Society are delighted to provide 2019 funding support to the University College Dublin (UCD) Patient Voice in Cancer Research (PVCR) initiative.
This initiative grew out of a clear unmet need to involve the voices of cancer patients within the scientific research process. Its main aim is to enable dialogue between patients and researchers, scientists, funding bodies and patient advocate groups so that the lived experience of cancer patients can enrich, inform and shape the research process.
Get involved in PPI
The Irish Cancer Society research department are seeking PPI representation from individuals affected by cancer (patients, family members, carers, and survivors) to participate in their research processes.
This currently involves our PPI representatives reviewing sections of grant applications that have been submitted to us by cancer researchers and/or participation on grant review interview panels.
If you are interested in becoming a patient representative please email firstname.lastname@example.org for further information.
(1) INVOLVE. (2018). What is public involvement in research? Retrieved from http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-rese…. Accessed 2/08/2018.
(2) Department of Health. (2017). National Cancer Strategy (2017-2016). Retrieved from https://health.gov.ie/wp-content/uploads/2017/07/National-Cancer-Strate…. Accessed 28/08/2018.
(3) Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014a). A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient-Patient-Centered Outcomes Research, 7(4), 387-395.
(4) Mockford, C., Staniszewska, S., Griffiths, F., & Herron-Marx, S. (2011). The impact of patient and public involvement on UK NHS health care: a systematic review. International Journal for Quality in Health Care, 24(1), 28-38.
(5) Thompson, J., Bissell, P., Cooper, C. L., Armitage, C. J., & Barber, R. (2014). Exploring the impact of patient and public involvement in a cancer research setting. Qualitative Health Research, 24(1), 46-54.
(6) Froggatt, K., Preston, N., Turner, M., & Kerr, C. (2014). Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges. BMJ Supportive & P Care, 5, 518–521.
For more information
(01) 231 0500