BioCanRx HQP member Allison McNamara spoke with Helene Hutchings, member of the Cancer Stakeholder Alliance Working Group, about her participation in the study
Much progress of cancer research has come directly from the multitude of scientists in the laboratory setting, however a new paradigm that involves not only scientists but the collaboration of cancer patients in the process is becoming recognized as increasingly important for the development of the next generation of cancer therapeutics. Cancer patients play a unique role in this process by guiding the thinking of scientists and clinicians to develop treatment strategies that not only best determine how to eradicate cancer, but also to achieve the most desirable quality of life for the patient. Although this patient involvement model is still in its infancy, steps are being taken to improve the involvement of patients in the process.
BioCanRx Cancer Stakeholder Alliance Working Group Member Helene Hutchings was involved in a study that aimed to take into account what outcomes of cancer treatment are the most important for patients undergoing anal cancer clinical trials. The study was known as the Core Outcome Research Measures in Anal Cancer (CORMAC). Currently clinical trials for anal cancer patients measure treatment outcomes in various ways and have also been poor at reporting short and long-term side effects from the cancer treatment. Many side effects are inevitable, however they are important for determining what is best for patient lifestyle along with efficacy in eradicating the tumor.
The CORMAC study aimed to agree to a ‘core outcome set’ that would provide a guide that all anal cancer trials should measure and report to standardize anal cancer clinical trial reports. Development of a set of core outcomes will allow for researchers and clinicians to gain a better understanding of how new therapies are best benefiting anal cancer patients, ensuring that side effects and quality of life are taken into account.
The CORMAC study involved a two-part process where an international online questionnaire was conducted and involved patients and healthcare providers. The survey aimed to determine which outcomes should be included in the set of core outcomes as well as asking the patients about their experience with anal cancer. Following the survey, a meeting was held with group of representatives. This meeting allowed for participants to complete another survey to rate how important various outcomes were to them. There was also a discussion that occurred between health care providers and the patients whenever answers to the survey did not match between the two groups. Hutchings noted that the involvement of anal cancer patients in the study did change what side effect outcomes appeared on the set of core outcomes, which often differed from the opinion of the clinicians. For Hutchings, the involvement of patients really allowed for the voices of cancer patients to be heard and a core outcome set was mutually agreed upon by the participants that included side effect outcomes important to cancer patients.
This unique study is paving the way in how we incorporate cancer patients into developing strategies to determine the best therapeutic outcomes. Not only will this study encourage all anal cancer trials to measure a core set of clinical outcomes, it also makes analysis and many clinical trials easier to determine the best way of treating patients.
Helene Hutchings is the CEO/Founder of not-for-profit organizations Hair Donation Ottawa and Anal Cancer – A Bum Rap, Helene is formerly from the UK and lives in Ottawa with her partner Iain and three daughters. Helene joined Coldwell Banker First Ottawa Realty in 2002 and has been helping clients with their Real Estate needs ever since.
Diagnosed and successfully treated for Cancer in 2010 at The Ottawa Hospital, Helene began the cancer research fundraiser Hair Donation Ottawa in 2011 as a way of thanking the medical profession that saved her life as well as creating Anal Cancer-A Bum Rap which offers peer-to-peer support for international anal cancer patients.
In March 2016, Helene was awarded The Sovereign’s Medal for Volunteers.
Allison McNamara is a graduate student at the University of Alberta, Cross Cancer Institute in Edmonton Alberta. Her work involves investigating colorectal cancer and its relationship with the immune system.
As an undergraduate student, Allison worked in an immunology lab and became interested in cancer later on in her science degree. The growing field of cancer immunotherapy inspired her to combine her interests in tumor biology and immunology to contribute to finding better biotherapeutics for cancer treatment. Through her work in her Master’s degree, she aims to better determine how to harness one’s own immune system to attack and eradicate colorectal cancer.
Allison has previously attended the 2017 BioCanRx Summit for Cancer Immunotherapy as a highly qualified personnel (HQP) and participated in the HQP professional development seminars as well as the BioCanRx Learning Institute. Allison is highly interested in improving the lives of cancer patients and continues to translate cancer research to the public in Edmonton and is involved in cancer patient advocacy.
