As a research student, I am grateful to have had the opportunity to interact with many patients and their families regarding ongoing research studies at the hospital.
Some of us may feel honoured to participate in a research study to help advance the scientific field, while some of us may not feel comfortable participating in a research study.
Here are 10 things you should consider asking, before deciding on your involvement:
- What type of research study is this?
There are different types of research study designs. For example, randomized controlled trials, observational studies, qualitative (e.g., interview-based) studies etc. Each of these different study designs, require different time commitments from you. - What is the purpose behind conducting this research study?
It might be helpful for you to understand the background of why this research study is being conducted to decide whether you would like to participate. Some studies are designed in a manner that may directly impact you, while some are designed to collect data to create further studies that aim to improve care of other patients like yourself. - Has this study been approved by the health ethics committee?
By the time a student, research scientist, or the physician approaches you with a research study, it has usually been cleared by the ethics committee. However, by asking this question you will gain a sense of safety, as you will get to know that the members of the ethics committee whose job it is to question all ethical issues involved have approved the study for patient participation. - What will my role be in this study?
This question will help you decide whether or not you are able to fulfill your role in the research study along with your personal commitments. - What are the risks involved in this study?
This question is key because you will only be able to make an informed decision after learning of the risks involved. Risks are usually dependent on the study design. Meaning, studies that are asking you to fill out surveys, may not involve any direct physical risks. However, a drug trial may involve some risks you need to be aware of, so that you can seek care when needed. - Will I be compensated for my time?
Depending on the study’s funding support, you may or may not be compensated in the study. Some studies might offer financial reward, some may offer a gift card while some may even offer you parking coverage for your time. - How will my confidentiality be maintained?
Research students and healthcare staff go through a mandatory training revolving around the personal health information’s act. However, you may want to make sure that your name and identifiable data are going to be secured and limited to only the trained research staff. - Will my healthcare team (i.e., your doctor, nurses etc.) be made aware of my participation in this research study?
Depending on the research study, your healthcare team may be made aware of your participation in the study. For example, if the research study involves a drug trial, everyone involved in providing you care will know of your participation. This is done to make sure you receive the appropriate care. However, if you are participating in a study that does not involve medical risks like completing surveys or engaging in focus groups, your healthcare team may not need to be made aware of your participation. - Who do I need to contact if I have more questions about my participation?
It would be of use to you and your family, to keep the name, phone number and email address of the research coordinator in case you or your loved one has any questions after leaving your appointment. - May I have a photocopied version of my signed consent document?
If you choose to participate in the research study, you will be asked to sign a consent document which contains important information such as the study’s name, principal investigator’s name, the research study’s purpose, the risks involved etc. Therefore, having a copy of the consent document will help you revive any information you might have forgotten about the research study at a later time point.
I hope these questions help you in making an informed decision of your participation in healthcare research. Without scientific evidence gathered from these research studies, advancing medical practice would not be a possibility. It is because of participants who agree to take part in research studies, that we now have the answers to medical mysteries that we did not have before.
Choose to participate in research studies, choose to help advance medical care and choose to help save lives!
Mudra Dave