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10 Biggest Cancer Clinical Trial Myths Busted

Cancer research manager dispels common misunderstandings

People have a lot of misconceptions about cancer clinical research trials. They might think patients mostly just take sugar pills instead of receiving actual treatment.  Or they may think clinical research studies are only for people who have no other options.

These and many other common beliefs about cancer clinical research trials are simply not true, says Joshua Beaver, Research Program Manager for Solid Tumor Oncology at Cleveland Clinic.

Mr. Beaver and his colleagues lined up a list of the Top 10 myths that they frequently hear about clinical trials and set about shooting them down one by one:

Myth 1: Participating in clinical research provides no benefit to me as the patient

In fact, trials give patients access to the latest drugs and procedures. Studies show that patients who participate in clinical trials have outcomes at least as good, if not better, than the general patient population.

Myth 2: My doctor can tell me whether or not to consent to clinical research

A physician’s job is to help a potential clinical research patients weigh the pros and cons and otherwise educate them.  Your doctor can’t give you a “yes” or “no” answer or try to predict whether a particular treatment will work or not. Instead, think of your doctor as a helpful resource in making an informed decision.

Myth 3: Researchers treat patients like guinea pigs

This is far from the truth,” Mr. Beaver says, mentioning a survey finding 97 percent of trial participants experienced respectful treatment and care exceeding their expectations.  Often, patients will not even feel like they are part of a study because clinical trials incorporate the best available medicine. Researchers will then adjust treatment to see if enhancements can improve patients’ quality of life or response rates.

Myth 4: Clinical research patients are taking sugar pills

Researchers never use sugar pills in place of the best known treatment for a given cancer, and they are very rarely used in clinical cancer trials whatsoever, Mr. Beaver says. “Patients who join clinical trials will never sacrifice quality of care.”

Myth 5: Health insurance won’t cover the cost

Check with your carrier but the chances are good that coverage will extend to the full cost of your treatment.

Myth 6: Cancer clinical research studies are for people who have no other options

Sometimes clinical trials are a last resort. But many times they simply involve a simple addition or adjustment to a standard treatment plan that can provide patients with a better quality of life.

Myth 7: You need to live near a major hospital to participate

Many clinical trials take place at regional hospitals. “Some trials even extend to local cancer clinics and doctor’s offices,” says Mr. Beaver.

Myth 8: Informed consent exists primarily to protect researchers’ legal interests

Informed consent provides patients with information about their rights as a participant to help them decide whether to participate. Mr. Beaver adds, “The consent process is actually designed to avoid ‘legalese’ and to make absolutely sure that it is understandable to everybody.”

Myth 9: Once you sign the informed consent form, you’re legally bound to participate

Patients have the right to decline participation at any time. Their doctors will then switch to the standard treatment for their condition.

Myth 10: Patients can’t expect medical personnel to keep them informed

Physicians, medical professionals and research staff are all available at any time to help patients. “We know and appreciate that patients’ willingness to participate is what makes cancer trials possible,” Mr. Beaver says.

More information

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  • MBU

    Myth #3 has a basis, at least in our family’s experience. After my sister’s lung cancer showed growth, she was removed from the study – right then and there. There was no offer to adjust the treatment or to recommend another option. Just a ‘sorry to tell you’ statement and that was it. The two of us left the exam room, found a bathroom where we cried our eyes out, then drove home. And that was Cleveland Clinic. Her subsequent death was no one’s fault, but being dropped like a hot potato from a clinical trial that really was her last option, was a cruel way to enter the last few months of her life.

  • Anonymous

    Interesting how Myth #5 doesn’t address whether or not the employer wants to pay for their employees to be experimented on. Nothing like these major providers getting trials paid for with someone else flipping the bill, and then reaping the benefits from an extremely expensive treatment. If these hospitals want to experiment on people, they should do so at their own expense.

  • Ray Foster

    “Myth 5″ is not a myth. It is a reality. From a BCBS Contract:

    “Medically Necessary/Medical Necessity

    A service or supply that We determine, at Our discretion, to be:

    1. necessary for the symptoms and diagnosis or treatment of the

    Illness or Injury;

    2. provided for the diagnosis, or the direct care and treatment, of

    the Illness or Injury;

    3. in accordance with generally accepted medical practice;

    4. not in excess of that level of care that is needed to provide safe,

    adequate and appropriate diagnosis or medical treatment;

    5. not for convenience purposes. . . ;

    6. the most appropriate level of medical care the Insured Person

    needs;

    7. furnished within the framework of generally accepted methods

    of medical management currently used in the United States;

    8. not Experimental or Investigational. . . ; and

    9. not for Maintenance Care. . . .

    The fact that a Physician prescribes, orders, recommends or
    approves the care, the level of care or the length of time care is to be
    received, does not make the services Medically Necessary.”

    CMS takes it even further, requiring that the treatment not be more expensive than alternatives. Only someone remarkably ensconced in an ivory tower would believe that #5 is a myth.

    • James

      Ray,

      I think you may have be misinformed but almost all trials are funded through pharmaceutical companies and it’s these researchers jobs to provide the best care and ensure that costs are not passed down to the patients. Take a look at the actual CMS guidelines pertaining to research here. Good job Cleveland Clinic. I’ve never been a patient here but would if I needed care.

      http://www.cms.gov/Medicare/Coverage/ClinicalTrialPolicies/downloads/finalnationalcoverage.pdf

  • Erica

    My mother had great experiences while on her trial. From the doctor to the nurse she was treated with dignity and respect. I’m sure that I was able to spend several more months with her due to the treatment she was given.

  • Josie M.

    Great article!

  • Jimmer

    I can speak to the fact that my clinical trial experience was truly a beneficial experience. Being diagnosed with lymphoma is bad enough but the care I received at Cleveland Clinic probably saved my life. 5 years cancer free this November!

  • Melissa

    Good job Mr. Beaver, very informative!

  • Anonymous

    I would like to see a follow up article that shows if and how much better patients are for being on a trial.

    • trip

      …that’s the entire point of the trials for research….

  • Michele

    Kudos to the Cleveland Clinic research staff. Mr. Beaver and co. set the record straight on why patients should consider research.

  • Rico

    Not as good as the tv show but still a worthwhile article.

  • Sam

    Glad to see there are other types of care for patients that don’t fit within the normal criterion.