Heart disease research and you
Should you particpate in patient case studies? Some thoughts to consider.
If you have heart disease you may have been asked to participate in heart disease research. This is even more likely if you have attended a hospital affiliated with a university or cardiac research center.
The decision to participate - or not - is a very personal one.
When I was diagnosed and hospitalized with heart disease in 2004 I was asked to participate in an outcome assessment study for patients with coronary heart disease. In agreeing to participate, I was advised that I would be contacted by mail annually and asked to complete a simple questionnaire regarding any hospitalizations, medications, and chest pain.
I knew immediately that I wanted to participate in this particular study - my only stipulation was that I receive a copy of the results (which reminds me I need to follow up and see where they're at with the study!).
Why participate?Medical progress is only achieved through years of research - testing, assessing, recording, and analyzing the results of medications, treatments, and procedures - ultimately out of the laboratory and on real people.
Some studies assess new medications or treatments, while others assess medications or treatments that are already "proven" and in common use. Some of the studies occur over a long period of time (longitudinal) and follow specific patients to determine outcomes related to specific treatments.
It's only through the willingness of people to participate in medical research and clinical studies that answers can be found.
What's in it for you?
According the the Mayo Clinic Heart Book there are several reasons to consider getting involved with heart disease research.
Participants in any study must be chosen carefully to ensure reliable data. Despite your best intentions, you may or may not be eligible to participate in heart disease research. For example, you may be excluded if you have another major illness because your symptoms and outcomes will be muddied by other factors.
Many studies are "double blind" in that neither the doctor nor the patient know who receives an active medication or the placebo (an inactive substance or preparation used as a control in an experiment or test to determine the effectiveness of a medicinal drug). Researchers who analyze the results don't have access to who had the medication and who had the placebo .
Note that in situations where one group is doing significantly worse than the other, the study will likely be stopped early to prevent further risk for the group experiencing poor results.
The point of placebos and double blind research is to ensure that the analyses are based on fact and not on the biases of the researchers or the participants.
What to do?
If you have the opportunity to participate in heart disease research you will have to make your decision based on the circumstances. Is it a longitudinal study? Is it a lifestyle study? Is it a medicinally based study? What are you comfortable with?
Read the consent form thoroughly. Understand any requirements, costs, or risks involved in participating in the study. Seek counsel if you feel it's necessary. You must sign the consent form in order to participate but you should also have the right to withdraw if you wish.
Often the results are published in medical journals and the media, but ask to receive a copy as well.