Building a culture of participation in research

By LaTese Briggs Program Analyst at FasterCures

“I have been waiting 174 days to say this: 'Good Morning America.' "

IDA MAE ASTUTE/ABC

Good Morning America anchor, Robin Roberts, made her triumphant and long awaited return to the talkshow last month after a five month recovery from a bone marrow transplant to treat myelodysplastic syndrome (MDS). The show and her fans have been celebrating and supporting Roberts’ through her courageous fight and recovery. An emotional Roberts’ thanked her fans, colleagues, and doctors for helping her through her battle with the disease, but she also took the time to thank all of the courageous people that participate in clinical trials.

“The standard treatments of today are developing because patients before you participated in clinical trials, and in a certain sense it’s our obligation as physicians and the patients of today to develop the standards of care for the patients of tomorrow.”

By participating in clinical research studies, these giving volunteers play a key role in improving the standard of care for themselves and future patients. Clinical trials are critical to bringing new drugs and interventions to patients in need. In a recent editorial by Francis Collins, Director of the National Institute of Health (NIH), he explains that the wealth of discoveries related to the genetic and environmental causes of disease, have led scientists to numerous new targets for drug development; however, the rate at which new drugs and other therapeutics are reaching patients has not increased proportionately. A key impediment to the translation of these discoveries to new treatments is the poor participation rate of Americans in clinical trials. This problem has been well-demonstrated in cancer where according to the NIH, only 3% of adults with cancer are participating in clinical trials.

According to studies conducted by CenterWatch, 94% of Americans recognize the importance of participating in clinical research in order to assist in the advancement of medical science; however, 75% of Americans state they have little to no knowledge about how clinical trials work and the participation process. This staggering statistic highlights the need to raise clinical trial awareness among the general public. Even small efforts like a simple thank you to clinical trial participants from a beloved morning show anchor, can have a major impact on achieving this goal. Thus involvement from the media and high profile individuals to illuminate the importance of clinical trials can be used as a powerful tool to educate the public on the link between improvements in healthcare and clinical research.

Educating patients and non-patients alike has become infinitely easier with the advent of online registries and databases. Sites like clinicaltrials.gov help doctors, patients, friends, and family members find clinical trials soon to be conducted in their area, their specific disease or a find a call for a person with a particular medical history.

The involvement of patient advocacy groups has also proven to be an effective way to increase clinical trial awareness and patient enrollment. A good example of this is the Love/Avon Army of Women collaboration between the Dr. Susan Love Research Foundation, the Avon Foundation, and the American Association of Cancer Research. The goal of this initiative is to recruit one million women willing to donate time, biospecimens and data to breast cancer research. To date, the organization has recruited nearly 400,000 women.

In addition, the use of outreach workers to educate patients about clinical trials can also potentially have a huge impact. These workers would not only make patients aware of clinical trials, but also work to address concerns and misconceptions about clinical trials that some may have. Common concerns include fear of experimentation, logistical concerns related to costs, insurance coverage, travel, missing work and/or time with family. Some common misconceptions are that clinical trials are last-resort efforts and one should only participate when all other approved treatments have failed, placebo treatment means that no treatment will be provided, and the assumption that intervention or treatment in the clinical trial is more invasive than standard treatment.

Clinical trials are truly the crux of drug development and medical innovation. Most trials evaluate new treatment options for safety and efficacy before making them commercially available; however, clinical trials are also used to understand the root cause of disease, improve disease detection, and compare commercially available drugs to determine which are more effective in certain patients. 

By raising awareness and educating the public about the power of clinical trials, we will be able to move research forward faster such that the many patients plagued by one disease or another will be able receive new and innovative medical solutions that hopefully exceed the current standard of care.

To find out more information about clinical trials and how you can get involved, check out these links:

-- http://www.armyofwomen.org/

-- http://www.patientslikeme.com/

-- https://foxtrialfinder.michaeljfox.org/

-- http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

-- http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/app/clinical-trials-matching-service

-- http://clinicaltrials.gov/

FasterCures' Patients Helping Doctors (PHD) Program
The Patients Helping Doctors (PHD) program anchors everything we do at FasterCures. In fighting disease, patience is not a virtue—patients are. Through PHD, we are building a culture of participation in research where patients and healthy volunteers understand the fundamental value they bring to clinical research. We focus our efforts on unlocking patient information—medical records and biological material such as tissue, blood, and DNA—and making these available to clinical researchers in a meaningful way. Learn more here.