As a cancer patient or survivor, participating in a research study might be the single most powerful thing you can do to make a difference in cancer research and care. Your opinions and experiences are invaluable: It is only through research that we are able to ask and answer questions including what treatments work, how current programs could be improved, how to improve patient care, and critical directions for cancer care. We wouldn’t be where we are today without research, however we still have a long way to go.
So with that in mind – I ask you – Have you ever thought about participating in a research study?
Maybe you saw a flyer at the cancer centre, a link on Facebook or Twitter, or perhaps you were asked directly by someone on your healthcare team. It might have been a paper questionnaire, an online survey, an in-person interview, a telephone call, or something similar.
Maybe you said yes, figuring, “why not”. It was a topic that interested you, a topic of personal relevance, or you just wanted to help out. Maybe you said no – the topic was not of personal interest, you didn’t think you could contribute much, you were busy, tired, or just didn’t want to. Yes or no – without judgment – the decision is always your choice.
That is perhaps the first and most basic tenet of research: the choice to participate is yours and yours alone to make.
As you make that important choice, however, it might help to have an understanding of how that research link came to be presented to you. Every research study first originates from an idea, a conversation, a question, a need, or an evident gap in the system. Reviewing the literature and discussing with colleagues are often the next steps, before the project takes shape into a research proposal. Within the protocol, the researchers further detail how the research will take place, including who will be asked to participate, what participation entails, the reasons for selecting particular tools, specific hypotheses, how the data will be collected and analyzed, and how the research findings will be disseminated.
For research conducted by a university or medical institution, the protocol must be reviewed and approved by the Research Ethics Board (REB). The REB helps to ensure that research projects meet stringent academic research standards, do not pose undue risk to participants, and that researchers adhere to the protocol submitted. In many ways, it helps to guarantee a standard is met.
All that to say, before you see the research poster, or Twitter notice, or Facebook message, or invite, a considerable amount of time forethought and preparation has gone into being able to actively recruit participants. This work is done because, most likely, there is a researcher on the other end, doing their best to understand the issue, and hoping to make a difference in the care of patients and our global understanding of the impact of cancer. At least, that’s why I do what I do.
In an effort to address a current gap in the literature, I’m in the process of recruiting for a study: an online survey for adolescent and young adult cancer patients and survivors. It is, admittedly, a long survey. It asks for information about cancer history, the key issues facing young adults, positive or negative life changes that have occurred since diagnosis, quality of life, distress, social support, life satisfaction, physical activity level, stress, and more. Although there are research studies out there that already ask many of these questions, they don’t do so together. This is really important, as we need a greater understanding of how all of these factors relate to one another. In the end, we are hoping to develop a clearer understanding of the issues faced by adolescent and young adult patients and survivors, as well as how resources and tools can be better tailored to meet specialized psychosocial care needs.
If you were diagnosed with cancer between the ages of 15 and 39, and are now over the age of 18, then you are eligible to participate in my research. Regardless of the type of cancer you were diagnosed with, regardless of where you are from, you are eligible. To say thank you, participants will have the option of being entered into a random prize draw for one of three prizes: a personalized iPod nano in the colour of choice, a Kindle e-reader, or a $100 VISA gift card. If you would like to participate, or for more information, please email me at firstname.lastname@example.org. You can also check out my Facebook research page (https://www.facebook.com/AYAresearch) and Twitter profile (https://twitter.com/LianeKandler) for updates from the adolescent and young adult cancer research and peer support fields.
Thanks for considering participation.
And if this is not a study you’re interested in, that’s okay too. Consider passing it on to someone else who might be.
Food for thought: please comment! Have you ever participated in a research study? Why? Why not?
Liane Kandler is completing a PhD in Clinical Psychology at Lakehead University (Thunder Bay, Ontario). Her research focuses on adolescent and young adult psychosocial oncology, including the impact of diagnosis and treatment, the evaluation of adventure therapy expeditions, and the use of online support strategies. When not studying, she enjoys a work-life balance thanks to her wonderful daughter Elsie, husband Cassidy, and dog Obie.
You can find Liane on Facebook (https://www.facebook.com/profile.php?id=100007333036993) and Twitter (https://twitter.com/LianeKandler).