The aim of PPI is that cancer research is done ‘with’ people with cancer, not ‘to’ them,” Dr. Frances Drummond, Breakthrough
Breakthrough Cancer Research (Breakthrough) is inviting cancer patients, survivors, their families, and members of the public from all walks of life across the country to get involved in its Public and Patient Involvement (PPI) panel.
The leading cancer research charity says it’s critical to include the voice of those impacted by cancer in their research as it will help to create better treatments and more cancer survivors in the future.
Breakthrough focus on funding research to improve cancer care and survival, especially for difficult to treat cancers that have a poor prognosis. They say that this collaboration will not only improve the quality of the cancer research, which will lead to better survival outcomes, but it will also ensure the relevance of future research to patients’ needs.
There are many different ways that the PPI panel can get involved, from participation in studies to becoming partners with researchers, and help share research findings. There are plenty of benefits for those who get involved in PPI, including a sense of empowerment, increased knowledge and improved communication with healthcare professionals.
Breakthrough Cancer Research is committed to ensuring that the research they fund is focused on improving cancer patient outcomes. Chief Executive Officer of Breakthrough, Orla Dolan, explained, “At Breakthrough, we want to fund the best cancer research. When we receive research applications, they go through an international scientific review process with experts in the field, to identify the best scientific proposals. Applications also undergo a PPI review, to get the perspective of patients and the public – those who are likely to be impacted by the research. Research shows that by asking patients and members of the public for their opinion, research can and is improved. Our aim is to involve patients and the public in the research we support.”
To empower and enable patients and the public to participate fully in the review process, Breakthrough will be hosting interactive training workshops for PPI panellists. To date more than 80 people nationwide have responded to the charity’s request to take part in the PPI panel and two training workshops have been held. During the workshops, PPI panellists have learned about the research process, and researchers have learned about important patient-related issues.
Breakthrough says PPI involvement is important in research and wants to emphasise the fact that those interested do not need to have been affected by cancer to take part.
The charity’s research manager, Dr. Frances Drummond, explained what taking part involves. “The aim of PPI is that cancer research is done ‘with’ people with cancer, not ‘to’ them. I am fortunate to work closely with Breakthroughs’ PPI panel. These amazing people can and do get involved in all aspects of our research department, to different degrees, depending on what is right for them. What is lovely, is seeing their confidence grow as they realise how important their lived experience and opinions are to the research processes.”
PPI participant, Helen McGonagle from Cork who was diagnosed with breast cancer in 2018, said she got involved with the initiative because she wanted to “contribute what I could to cancer research in acknowledgement and gratitude for all the expertise I had benefited from.”
She believes it is important for cancer research funding bodies to have a PPI panel for a variety of reasons. “PPI creates a type of partnership between cancer researchers, funding bodies and those affected by cancer and helps support the dialogue or connection between researchers, funding bodies and patients,” Helen said.
“It is essential that the voices of cancer patients, those who have recovered from cancer and their families are heard by those involved in the research process. These voices provide the lived experience which is so important in informing the decisions on funding and the researchers amazing work. I also think that input from patients and others affected by cancer can help funding bodies and researchers in terms of their own insights or connection with their research – it takes the research from the theoretical to the practical,” she added
If you would like to get involved in Breakthrough’s Public Patient Initiative and help improve cancer research, treatments and care, regardless of whether or not you have experienced cancer, please complete the online form on breakthroughcancerresearch.ie or contact Dr. Frances Drummond on 021 4226655 or frances@breakcancer.ie
