Pictured: Leader of the research Dr Catherine Kelly, Consultant Oncologist at the Mater Misericordiae University Hospital, Dublin, and Associate Professor at UCD with Prof Bryan Hennessy, Clinical Lead with Cancer Trial Ireland
8 in 10 would take part in a trial for others
A nationwide survey of people living with cancer found that helping future patients by advancing research is as important a factor as potentially living longer and feeling better.
When asked to list the most important factors [i] in deciding to take part in a cancer trial, living longer/feeling better (82%), the chance to advance research (81%) and getting a recommendation by their cancer doctor (76%) were the top three most important factors.
Led by Dr Catherine Kelly, Consultant Oncologist at the Mater Misericordiae University Hospital, Dublin, and Associate Professor at UCD, Dublin, the research found that most people living with cancer are receptive to going on a trial, with most who were offered the opportunity to participate in a trial accepting it.
Commenting on the altruism of people taking part in cancer trials, Prof Bryan Hennessy, Clinical Lead with Cancer Trial Ireland, said, “This research clearly illustrates the generosity of people living with cancer. While cancer trials can give people access to promising new treatments, not yet available through the mainstream health service, it’s humbling to see that one of the most important factors for their participation is to advance cancer research to help future generations.
“Approximately 100 cancer trials, which seek to find the answers to cancer, are currently recruiting people living with cancer in 16 hospitals around the country. At any one time there are in the region of 6,000 people taking part in cancer trials[ii]. As a community we owe these people a great debt of gratitude,” he said.
Commenting on the research Dr Kelly said, “We want to better understand how we can further support people living with cancer and this research will help us do that. While most people living with cancer said they fully understand the term cancer clinical trials, the research also highlighted a myth about what participating in a cancer trial really means. Many patients consider cancer trials to be a last resort treatment option[iii], with 22% of people surveyed believing that cancer trials were only used when standard treatments had not worked.
“On the contrary, cancer trials can offer hope to all patients with cancer, not just those for whom standard treatment has not been successful. Cancer trials test new and potentially more effective ways to prevent, diagnose, and treat cancer. Most of our trials involve testing new drugs which show promise or new combinations of existing drugs which may offer better outcomes than treatments currently used,” Dr Kelly said.
Speaking at the launch of the Just Ask Your Doctor! campaign, Eibhlín Mulroe, CEO of Cancer Trials Ireland said, “The findings of this research show us that less than one in ten (9%) patients living with cancer asked about participating in a cancer trial. This points to the need to improve the community’s understanding of cancer trials. The Cancer Trials Ireland Just Ask Your Doctor! campaign aims to empower people with cancer to trigger information rich conversations with their doctor and support teams. We’re calling on all people living with cancer to just ask their doctor if there is a relevant cancer trial that they can join to enhance their treatment options. All cancer trials are listed on our website; www.cancertrials.ie
“Since Cancer Trials Ireland was established in 1996, more than 15,000 patients have participated in over 350 cancer trials. We have lobbied hard for the increase in the number of people who can participate in cancer trials, contributing to the Government’s decision to set a Key Performance Indicator to double the number of people with cancer who can access cancer drug trials, from the current 3% to 6% by 2020, as part of the National Cancer Strategy 2017 – 2026. This will not only save the HSE millions of euro in drug costs (at least €6.5 million annually[iv]), but also provide more patients with access to promising new treatments that would otherwise not be available,” Ms Mulroe said.
The survey also found that when making decisions about cancer trial participation nearly six out of ten (56%) would consult their family as a frequent source of support, with two out of ten (21%) frequently consulting the interneti. Cancer doctors and specialist nurses scored highest in terms of trust among people living with cancers; (70%) and (50%) gave them full scores respectively i.
Trials are highly regulated by the Health Products Regulatory Authority (HPRA) and patients are intensively monitored by their consultant and research teams at all stages. Any patient can withdraw from a trial at any time, without penalty or loss of benefits to which he or she is otherwise entitled, if they wish to do so.
Cancer Trials Ireland is a not-for-profit registered charity, partly funded by grants from the Health Research Board (HRB) and the Irish Cancer Society. Cancer Trials Ireland works with the foremost Medical, Surgical and Radiation Oncologists, as well as Haematologists (blood cancer specialist consultants) and Research Specialists (Oncology Research Nurses, Translational Scientists, Data Managers, Pharmacists and staff) in Ireland. It works with the leading international collaborative research groups around the world to bring international trials to Ireland. It also works closely with the global pharmaceutical companies to open cancer trials in Ireland.
Cancer Trials Ireland’s Just Ask Your Doctor! campaign has been part-funded by unrestricted grants from the pharmaceutical companies MSD, Pfizer, AbbVie, Novartis and Roche.
Cancer Trials FAQs
What are cancer trials?
Cancer trials look at new ways to prevent, detect, and treat cancer. They can also help improve the quality of life for people with cancer. Most trials involve testing new drugs, surgery, immunotherapy or radiotherapy treatments which show promise or new combinations of existing treatments. Cancer trials are highly regulated and follow a long and careful research process to make sure they are as safe as possible.
How would I benefit?
On a cancer trial you may receive access to a treatment, a combination of treatments, or a procedure not available as standard for your type of cancer. You would be closely monitored by your doctor, clinical research nurse, experienced researchers and the trial team. You may also be helping to find answers to cancer for future generations.
Are there drawbacks?
The treatment you would get during a trial may be different to what you would receive if you were not on a trial. There might be some side effects, some of which are not yet known. You might have to visit your hospital more often for blood tests, scans and other assessments.
How long do trials last?
Trials can take place over many years and may involve up to hundreds or thousands of patients. Each trial is different and the number of patients taking part and the length of time you would be on a trial depends on what was being tested.
When would I know the results?
When your trial treatment is complete you would continue to be monitored, sometimes over many years. This is so that the trial team can build up a reliable picture of the effectiveness of the treatment. When the trial is complete, the results would be published in a medical journal and available from your trial team. If new information relevant to your taking part in the trial became available during the trial you would be kept informed.
Could I withdraw from a trial?
Of course, taking part in a cancer trial is entirely voluntary; you can decide not to take part or if you do, you can withdraw at any stage. Your choice would not affect your relationship with your doctor or the care you would receive.
Would taking part affect the care I receive?
On a trial you are likely to receive more care as you would be monitored very closely and see your trial doctor and support team more often. You would have more opportunities to ask about your treatment, progress and general well-being.
Why are cancer trials important?
New and more effective approaches to cancer prevention, detection and treatment cannot be developed without cancer trials. All cancer treatments used today were once tested through a cancer trial. Cancer trials enable access to new treatments and help researchers increase knowledge on the best way to deliver these treatments. By taking part in a cancer trial you would be helping to test new ways to prevent, detect or treat cancer.
Can I take part in a cancer trial?
Cancer trials are not open for all types of cancer and are not always available in all hospitals in different parts of the country. Each trial has strict criteria for who can take part. For example, a trial might be for a certain age group, a particular type or stage of cancer, for patients with specific previous treatments, or may exclude patients with other certain conditions or illnesses. Your doctor can advise you of any cancer trials available for your disease type either in the hospital where you are being seen or another hospital and assess whether taking part in a trial is suitable for you and in your best interests.
How can I find out more?
Just Ask Your Doctor! or healthcare professional if there is a cancer trial currently available that would suit you. You can also find a list of open cancer trials here and you can call the Irish Cancer Society’s Cancer Nurseline for information about cancer trials on Freephone 1800 200 700.
[i] Kelly, C. Feighery, R. Mc Caffrey, J. Higgins, M. Smith, M. O’Reilly, S. Horgan, A. Walshe, J. McDermott, R. O’Donnell, D. Morris, P. Keane, M. Martin, M. Murphy, C. Duffy, K. Mihai, A. Armstrong, J. Mulroe, E. Murphy, V. Kelly, C. M. (2018). Do Oncology Patients Understand Clinical Trials? A Nationwide Study By Cancer Trials Ireland. Dublin
[ii] Cancer Trials Ireland: http://www.cancertrials.ie/2017/07/national-cancer-strategy/
[iii] Kelly CM et al. J Clin Oncol 33 ,2015 Suppl ;abstr e17586
[iv] [iv] Health & Economic Impacts of Cancer Trials in Ireland commissioned by Cancer Trials Ireland. Prepared by DKM Economic Consultants (2016)