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Question: My daughter suffers from really bad anxiety. She has been on a waiting list for many months to see a specialist at a hospital. The doctor’s office recently phoned to say my daughter can be seen right away if I agree to enroll her in a study. It seems wrong to tie her treatment to a study. To me, this just looks like queue jumping. Is this fair or even ethical?
Answer: By taking part in a research study, you can sometimes gain quicker access to treatment than would normally be the case in our health care system.
But please don’t get the idea that this is some type of queue jumping. The money for the treatment would have come from the study’s sponsor – and is separate from regular health care spending.
“Unfortunately, mental health services tend to be underfunded and the wait times for many different conditions are very long,” says Sally Bean, a policy advisor and ethicist at Sunnybrook Health Sciences Centre.
Occasionally, though, additional funds are provided through studies in which researchers are trying to evaluate a particular treatment. For instance, the money might come from a pharmaceutical company, a medical-device manufacturer or a research institute.
“So long as it is voluntary, and someone is making a free and informed choice,” then this approach can benefit patients, adds Bean. In fact, for cancer patients, a clinical trial may be one of the few ways for them to get new and extremely expensive medications that aren’t covered by provincial health and drug insurance plans.
When a study is integrated into a patient’s regular care, the medical staff will keep track of the different aspects of the treatment for accounting purposes.
“A study that is going to, for example, prolong an inpatient stay for three-days can have implications for hospital resources,” says Bean. “Those types of additional resource requirements would have to be funded by the study so they don’t affect our regular day-to-day care.”
Studies involving hospital patients are overseen by Research Ethics Boards (REB) to make sure the participants are protected. A REB would do an independent review of all details of a study – including the funding – before the research can start.
It’s also critically important that patients – or the parents, in the case of a child – feel free to say no when they don’t want to be included in a study, says Randi Zlotnik Shaul, director of bioethics at The Hospital for Sick Children in Toronto.
“The fact that you say no to the research study doesn’t mean that you’ve lost the opportunity to go the regular route,” she says. “You would still be in the queue for the standard treatment.”
Even so, “people sometimes worry that the doctor won’t be happy with them if they don’t support the research,” says Dr. Zlotnik Shaul. And, it’s easy to understand how they might fear their overall care could be affected in a negative way.
To minimize that sense of vulnerability, the doctors in charge of a study shouldn’t be directly involved in recruiting their own patients as potential participants in the research. “They can leave the room and someone else can introduce [the idea of participating in] the study,” explains Dr. Zlotnik Shaul.
If you ever have an issue with the way a study is being run at a hospital, contact the ethics board overseeing the research. In many cases, you can simply phone the main number of the hospital and ask for the Bioethics Department or the ethicist.
All hospitals also have some type of office that deals with complaints or concerns of patients and their family members. That office should be able to put you in touch with the Bioethics service or the office of the Research Ethics Board. (At Sunnybrook, the patient relations department is called The Office of the Patient Experience.)
“The research ethics board would be in the best position to address any concerns that an individual might have about a particular clinical trial,” says Dr. Zlotnik Shaul.
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.