When you, or a loved one, are sick, you might research clinical trials online to learn about treatment options. Before you choose a treatment, you should know about all possible side effects. However, it turns researchers do not always accurately report side effects in clinical trials. This is true even for studies published in the highest caliber medical journals.
Since all medications and treatments have potential side effects, some more dangerous than others, it’s important to learn about risk. But the lack of accurate information makes it hard to make informed decisions.
Clinical trial results don’t report all side effects.
In a recently published report, the authors state that “there is strong evidence that much of the information on adverse events remains unpublished and that the number and range of adverse events is higher in unpublished than in published versions of the same study.”
The analysis found that on average, 64% of side effects were not reported in articles published in medical literature documenting the results of clinical trials, when compared to side effects reported in unpublished reports on the same research. This includes serious side effects such as death, suicide, and/or adverse respiratory events.
This research raises red flags for doctors and patients. The authors report serious concerns about the large amount of data regarding negative, or adverse, events that remains unpublished. The general public, as well as doctors and other healthcare workers, would struggle to find this important “hidden” information.
What can you do?
Unfortunately, it can be very difficult to obtain unpublished results from clinical trials.
For starters, you can research clinical trial results on Proquest Dissertations and Theses. You can also look up medical conference databases and/or study trial registries.
This process is very labor intensive and would be difficult for most patients, families and doctors. There is a movement towards requiring studies to include all side effects information; however, it will likely be many years before all studies include exhaustive lists of potential side effects.
Until this problem is fixed, read medical journals with a critical eye, realizing not all side effects are included, even harmful ones. Keep in mind that your doctor likely does not have information on all potential side effects either.
It may be helpful to speak to patients with similar conditions to learn of their experiences with particular treatments. If you do so, realize their comments are not medical opinion. If interested, you can find support groups and group chats by searching online.
For more information, read Can You Trust Advice from Other Patients?
Want to learn more about clinical trials? Read my blog posts:
- What You Need to Know About Clinical Trials Before You Sign the Dotted Line.
- Researching Clinical Trial Results.
Want to learn more about the diagnostic process and choosing a treatment? Read these posts:
- 10 Steps to Reduce Your Risk of Diagnostic Error.
- The Dangers of Too Many Medical Tests and Treatments.
- 10 Tips for a Better Medical Appointment.
- Can You Trust Medical Information Online?
- Understanding Medical Information Is Harder Than Most Realize.
- Communication Gap Among Doctors.
- Help for Hard to Diagnose Health Issues.
NOTE: I updated this post on 8-22-21.
Sheila Rafter says
Thank you for sharing this great article!