Why Should We Participate in Clinical Trials?

By now, you’ve probably seen the meager statistics of clinical trial participation among cancer patients: less than 5% of cancer patients have participated in a clinical trial (NCI); 85% of cancer patients are unaware that clinical trials are even an option (Harris Interactive). A recent New York Times article by Gina Kolata, “Forty Years’ War – Lack of Study Volunteers Hobbles Cancer Fight,” (Aug. 3, 2009) further highlights the ongoing crisis in low patient participation in cancer clinical trials.

Given that clinical trials are the only way in which to approve new, potentially life-saving therapies, why are more patients not volunteering for clinical trials? The last time we checked, cancer in most of its forms has not yet been cured. There are more promising statistics however: out of the 85% of cancer patients unaware of clinical trials, 76% of them indicated that they would be willing to consider a clinical trial had they known about them as an option. Another survey conducted by Harris Interactive in 2000 indicated that 32% of American adults would participate in a clinical trial if asked to do so, the results of which were published in the Journal of Clinical Oncology. Indeed, over 90% of eligible children with cancer are entered in clinical trials, according to the Children’s Oncology Group. Perhaps that statistic may have contributed to the fact that 80% of children with cancer will be alive in 5 years as compared to only 50% in the 1970’s (CA Journal).

So, what do we do now? How can we achieve the same level of clinical trial participation that exists in children’s cancer? Here we offer reasons to participate in clinical trials, the questions to ask before entering a clinical trial, as well as some strategies to increase public awareness.

Top 5 Reasons to Participate in a Clinical Trial:

1. Help yourself: ultimately it’s about you. While clinical trials typically study an investigational therapy, you can get access to potentially better treatments sooner, especially if you and your doctor have already tried standard therapies.
2. Help others: the information that researchers gather about your condition and how your body reacts to a certain treatment is pooled together with those of other patients. This information helps physicians determine how to better treat a given medical condition in entire populations of individuals.
3. Access to top quality medical care: 97% of people who participated in a clinical trial rated the quality of their care as either “excellent” or “good.” (Harris Interactive) Clinical trials are conducted by some of the best and brightest medical professionals who generally specialize in a disease area.
4. Access to new, potentially better treatments: while there may be a shortage of clinical trial participants, there’s no shortage of new, promising drugs for all kinds of cancers. In fact, 43% of all “new chemical entities” are for cancer and cancer-related conditions (Cutting Edge Information 2004).
5. Advance medical science: your participation in a clinical trial will ultimately advance medical knowledge that will eventually lead to a cure. Cancer is a compilation of hundreds if not thousands of different conditions. It will take the full participation of the patient community to find meaningful new treatments and cures.

Top 5 Questions You Should Ask Before Entering a Clinical Trial

1. What is the purpose of this clinical trial and what is currently known about the potential benefits of the drug being tested in this clinical trial?
2. What are the known side effects of this drug? Are there any other potential side effects that might occur? Are there any other risks that I should be aware of?
3. How often do I have to come into the clinic for this clinical trial? What kinds of blood tests, CT scans, MRIs, X-rays, or other diagnostic tests do I have to undergo as part of this clinical trial? How long will this clinical trial last?
4. What qualifications do you and your staff have in conducting clinical trials?
5. Will I find out the results of this clinical trial? How will I be notified?

Note: read the consent form very carefully before signing. Do not feel rushed into anything you are unclear about.

Strategies to Raise Public Awareness of Clinical Trials

We believe that the responsibility of raising public awareness of clinical trials falls on the shoulders of multiple stakeholders: academic medical centers, government research organizations like the National Cancer Institute, physicians, pharmaceutical and biotechnology companies, and academic research societies like the AACR and ASCO. The question remains, how do we do it? How do we get the public aware of clinical trials? Here are some suggestions:

1. Traditional Media Campaign: Stakeholders should ban together and create, finance and execute a mass media public awareness campaign of the need for more patient participation in cancer clinical trials. A focused message of the importance of clinical trial participation can literally flood television, radio, and print media. Articles like the one written by Ms. Kolata of the New York Times go a long way in spurring discussion and awareness.
2. Digital Media Campaign: From WebMD and Everyday Health to the myriad patient blogs, engage online health content websites with public service announcements about the need for greater clinical trial participation among cancer patients.
3. Social Media Campaign: Twitter and Facebook have over 300 million users. These emerging platforms offer a promising way to spread the message of clinical trial participation virally. In addition, patient social networks like Inspire and Patients Like Me have cropped in recent years and can provide users opportunities to learn about clinical trials specific to their medical condition.
4. Online Clinical Trial Matching: Companies such as ours, Healogica are crafting solutions that help patients find the right clinical trials based on their age, gender, geographic location and medical information. Additionally, clinical researchers can log on to our system and find patients based on the inclusion and exclusion criteria outlined in the clinical trial. Providing this matching tool on mobile platforms (like our iPhone app) can also make a difference in generating public awareness and engagement.
5. Clinical Trial Volunteer Network: Using social networking platforms like Twitter and Facebook, we envision a group of people who have participated in clinical trials and can be made available to speak with those who are considering a clinical trial. According to Harris Interactive, 76% of cancer clinical trial participants would recommend a clinical trial to another cancer patient.

Again, these are only a few suggestions that will hopefully spur more brainstorming to generate awareness of clinical trial participation.

We under no illusion that increasing patient participation in cancer clinical trials will take anything but time, hard work and coordination among patients, physicians, drug companies, medical centers and the government. However, we remain confidently optimistic that clinical trial participation can and will improve over time. Finally, we leave you with a quote by Dr. Scott Ramsey in the New York Times article:

“We can’t improve survival unless we test new treatments against established ones.”

Clinical Trial Resources:

• CISCRP – Center for the Information & Study on Clinical Research Participation
• ENACCT – Education Network to Advance Cancer Clinical Trials
• ClinicalTrials.gov – comprehensive database of clinical trials
• FDA – Food and Drug Administration

By Edward Shin, MD and Jean-Luc Neptune, MD MBA co-founders of Healogica

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