Study Coordinators: Clinical Trials’ Unsung Heroes
by Mackenzie Gignac
Enrolling in a clinical trial can be an intimidating idea for some who are seeking treatment for their medical condition. However, there is actually a hidden benefit for those who feel courageous enough to enroll.
Clinical trials are run with the help of study coordinators. These coordinators are assigned to be the middleman between the patients, doctors, and the pharmaceutical company sponsoring the trial drug. Study coordinators help guide patients throughout the whole trial and guide them through all of their care, from the start of the trial to finish.
‘We monitor their progress closely, from the moment they get on the trial to the moment they come off,’ says Anupa Dey, who works in the clinical haematology unit as clinical trial coordinator at St. Vincent’s Hospital in Melbourne. ‘Other standard of care options don’t really have a coordinator touching base with them as frequently.’
Patients are seen much more frequently throughout a clinical trial than they would be on a standard care chemotherapy option. Because of this study coordinators are able to build a closer and more unique bond with their patients.
‘We see the patients once a week, so we can really focus on their concerns,’ says Dey. Study coordinators allow the patients to receive close to instant feedback about their worries. ‘If a patient brings up a side effect with me, I am able to get in contact with the doctor immediately instead of them having to wait a month.’
This kind of instant feedback can help to relieve anxiety and provide comfort for patients as they know they have an extra professional providing an additional layer of support. Often study coordinators provide direct lines of communication to their patients to allow their patients to come to them with any concerns, ‘they have our numbers and email addresses, so that way we can stay in close link with each other,’ says Dey. ‘We do build that bond with them, so they feel like they can trust us and tell us things.’
This kind of close connection with the patients is one of the reasons Dey says she enjoys her line of work. ‘I love working with the patients because you feel like you’re making a positive impact on somebody. You do see a lot of lives changing which is fantastic,’ she says.
Dey says another positive aspect is getting to work firsthand with new cutting edge drugs that will shape the future of care for patients. ‘Clinical trials have a massive impact on changing the treatment landscape of cancer in general. I love that aspect of it.’
Clinical trials that study coordinators work on help to improve the current treatment options for patients. In the trials that focus on cancer treatments, these trials study new targeted therapy options.
‘Normal chemotherapy doesn’t discriminate between normal and cancer-inducing cells,’ says Dey. Traditional chemotherapy often leaves patients dealing with a lot of side effects, but the treatments that are being studied now have reduced side effects by focusing on more targeted therapy. ‘Targeted treatment specifically targets the cancer-inducing cells which means less side effects such as nausea, hair loss, things like that,’ says Dey.
Additionally, these targeted therapies are being tested now so they can be listed on the pharmaceutical benefits scheme in the future. Currently, they are not widely available for medical use. However, this is one of the benefits of choosing to enroll in a clinical trial.
‘Being on a clinical trial gives you access to medications you wouldn’t otherwise have access to,’ says Dey. ‘That’s a win for the patient, because they are getting something with hopefully fewer side effects.’
Enrolling in a clinical trial is a good option for multiple reasons, ‘There are a lot of benefits to a clinical trial, it’s not just a novel drug, it’s also everything that comes with it, especially from a support perspective,’ says Dey.
Aside from monitoring and reporting their progress in the hospital, study coordinators also manage the care of their patients in other ways. ‘We do everything from arranging their taxis, to organising their accommodation, to their reimbursements for travel,’ says Dey.
Additionally, a lot of times patients are unaware that there are additional third-party support options for them. ‘It can be so daunting not having that support,’ says Dey. She says that organisations such as the Leukemia Foundation or the Red Cross offer support services for those in need.
Along with doctors, study coordinators take a patient-centered approach to their work. ‘As a coordinator, almost all the coordinators have a passion for clinical trials and really invest their time in helping the patient they have,’ says Dey.
‘I see my role as study coordinator as giving the patient access to something they otherwise wouldn’t have access to. It’s a privilege to work with the patients and to hear their stories.’