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Educate Yourself on Clinical Trials

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Below is a recent blog from our partners at Education Network to Advance Cancer Clinical Trials (ENACCT) about the need to educate people on clinical trials.

August 5, 2009

The recent article, “Lack of Study Volunteers May Hobble Cancer Fight” by Gina Kolata, discusses the challenge of making progress against cancer in the face of low participation rates among adult cancer patients. However, there are important aspects of this issue that were not sufficiently addressed.

First, the notion that patients are not interested in clinical trials has been refuted. In fact, a 2003 study of American adults by Comis and colleagues in the Journal of Clinical Oncology found that 32% of respondents indicated that they would be very willing to participate in a cancer clinical trial if asked to do so. An earlier study by Comis and colleagues in 2000 highlighted the importance of patient awareness; eighty-five percent of cancer patients surveyed were unaware that clinical trials were a treatment option. Secondly, while trial participation rates are lower among medically underserved populations, this, too, cannot be attributed primarily to disinterest. A recent analysis (Wendler et al) of research studies indicated that minorities may be as willing to participate in research, but are less likely to be asked.

We believe that the principles of social justice demand that all eligible individuals be offered the opportunity to participate in clinical research, ensuring that both the potential benefit and burdens of research participation are shared among all groups. In ENACCT’s experience, one way to address this is through ongoing community based education about cancer clinical trials. Enhanced public awareness–before the point of diagnosis and especially among minority communities–may translate to greater acceptability of a clinical trial when it is presented to a patient as an option. We must also help primary care providers understand more about cancer clinical trials, as they can play a valuable role in proactively making early referrals to oncologists that offer cancer clinical trials.

Ms. Kolata also leaves the impression that clinical trials are most appropriate for those who choose it as a last resort. While some cancer patients may be open to joining a trial when other options are no longer feasible, these should not and need not be the only patients who should be the focus of recruitment efforts. Since all patients in phase III trials receive at least standard treatment, cancer clinical trials can be a quality treatment option to many different kinds of patients-even for those receiving their first treatment.

Finally, the article describes two main options for addressing the challenge of low participation-either offering more incentives for doctors and patients or streamlining studies to result in smaller sample sizes. While we certainly support these ideas, in the communities in which ENACCT has worked, we have found that improving the quality of the patient-provider encounter when discussing the possibility of clinical trial participation is paramount. Clinical trial staff that is well trained in providing culturally competent, patient-centered care can more successfully recruit patients of all backgrounds by adequately addressing the cultural, linguistic, psychosocial and resource needs of the patient as they consider their treatment options. As for the second solution offered, utilization of smaller, later-stage study samples may in fact provide a more efficient means of completing a study, but should nevertheless be considered carefully. Sacrificing more diverse research participation in the name of expediency may result in limited generalizability for the population as a whole.

With recent reports estimating that approximately 40% of NCI’s Phase III treatment trials are closing early due to poor accrual, something must be done to change the current paradigm. Improving rates of participation is no doubt a demanding goal, but with greater community engagement, improved health care system infrastructure and sustained commitment by researchers to enhance recruitment strategies, accelerated progress against cancer can be achieved.

  • Jamie Lindsay

    This is ANOTHER of the strengths of the approach taken by the Lance Armstrong Foundation, a desire for all people diagnosed to, as the Manifesto states “..get smart about clinical trials.” When I was diagnosed, thanks to the information at LiveSTRONG.ORG, I was ready to ask. Even though my doctor was a researcher, she was a bit taken back that I was so prepared to broach the subject.
    I was in the trial in a matter of days and in remission in a few months thanks to the trial and thanks to the LAF for pointing me in the right direction.
    To the LAF team, please keep leading the way on this very important piece to the Survivorship puzzle!
    LiveSTRONG!

  • http://www.cookieshouse.com/wp/ Rebecca

    I’m on my fourth clinical trial in 2 1/2 years for breast cancer. I have to travel over 2hrs to a hospital that offers trials. The closer community hospital offers no trials. Most of my trials have involved multiple trips per week, sometimes staying over night in a hotel closer to the hospital.

    My family is starting to question my choice of doing trials. Having little support of my treatment choices has not helped.

    As for people choosing to do trials, many people are afraid of getting placebos, basically no treatment. Educating potential trial participants that this isn’t the case would be a huge plus.

  • http://www.fastercures.org Cecilia Arradaza

    We at FasterCures echo the movement to empower patients to become active participants in medical research. We wanted to share a letter published in the NYTimes in response to the Kolata article referenced above.

    Letter to the Editor as published August 7, 2009:
    Why Patients Turn Down Clinical Trials

    To the Editor:

    Re ?Lack of Study Volunteers Is Said to Hobble Fight Against Cancer? (?Forty Years? War? series, front page, Aug. 3):

    I read with interest your article about the chilling effect that low recruitment for clinical trials has had on the search for meaningful treatments.

    Patients can play a critical role in the search for cures, but it is time we rethink the entire paradigm surrounding clinical trial design and recruitment.

    Clinical trials offer patients some say in their own destinies, and to leave a legacy that may save others, even if it?s too late to save themselves.

    Unfortunately, the current system governing clinical trials gives patients concrete reasons to balk at participating. Often, clinical trials are aptly named: they are trials ? difficult and exhausting, at a time when a patient?s physical and emotional capacities are already stretched thin.

    Within each of us is a Rosetta Stone that could unlock the potential to cure disease, but it requires that we reconsider how we approach treating a seriously ill patient ? and how we approach being one.

    Margaret Anderson
    Washington, Aug. 4, 2009
    The writer is chief operating officer of FasterCures, which aims to accelerate the pace of medical research and development.
    http://www.nytimes.com/2009/08/07/opinion/l07cancer.html?_r=1&ref=opinion