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Raising Public and Patient Awareness of Clinical Trials

Ellyn Getz
Associate Director

Mass media coverage and popular cultural depictions of clinical research during the past decade have continued to grow. For the vast majority of the public, these channels are the dominant educational medium—unfortunately most of this exposure—has been negative and/or unbalanced, focusing largely on risks, human error, and questionable motives.

During that same timeframe, new and expanded programs and initiatives designed to raise public awareness and improve clinical research literacy—particularly among minority and underserved communities—have been implemented. The Center for Information and Study on Clinical Research Participation (CISCRP)’s novel programs are having an impact, and they are evolving and expanding to counteract the effects of wide-spread negative and unbalanced exposure.

A powerful communication channel

Most journalists have little to no prior knowledge about clinical research and must hastily gather information and interview quotes while facing tight deadlines and editorial demands for headline-grabbing coverage. As a result, although some articles profile patients and families that have found hope in clinical trials and investigational treatments, the majority provide a negative and often sensationalistic focus on mistakes made by clinical research professionals, concealment, fraud, and corruption.

CISCRP compiled and evaluated articles focusing specifically on patient experiences in clinical trials that appeared in three major national newspapers—USA Today, The New York Times, and The Wall Street Journal—between 2016 and 2018. The results of this assessment were compared with a similar approach conducted 15 years ago at CISCRP’s inception. The proportion of articles that offered unbalanced, negative coverage had not changed during the 15-year time horizon.

Trends in fictional film and television—two popular culture mediums with extensive reach—are even more alarming, with major fictional stories in film and TV often depicting experimental treatments and procedures for severe and chronic medical conditions that have run amok (e.g., Side Effects, Maniac, etc.).

Although it is not their primary objective, the star power and story lines in these movies arguably reach and influence large audiences and seldom provide any information that might help educate and inform patients with diverse medical conditions about clinical research and the participation process.

There is a silver lining. Most coverage in the mass media and in popular culture—including film and literature—is removed from and lacks personal relevance to a large percentage of its audience. The themes and messages are not tailored or targeted. They are unable to address the highly personalized nature of each person’s health, medical journey, and learning style enhanced by interactions with trusted advisors in individualized locations and communities.

Coverage in the news and in entertainment media is not coordinated and integrated into the many systems and stakeholders that facilitate patient engagement. Numerous studies in the literature demonstrate that clinical research participation is a team-based undertaking: patients rely on their personal healthcare providers and trusted family, friends, and professionals to make decisions and follow-through with their participation in clinical research.

CISCRP’s awareness-building and education strategy has been evolving to take advantage of these weaknesses.

Expanded and new public and patient awareness and education models

CISCRP places a disproportionately high investment of time and staff on local community-based approaches to facilitate awareness. We work with local advocacy groups or hospitals; encourage colleagues, family, friends, doctors, and research teams to extend personal invitations; and hold in-person conversations at health fairs and local events.

During the past 15 years, CISCRP and other organizations—including the Pharmaceutical Research and Manufacturers of America (PhRMA) and TransCelerate BioPharma—have increased the frequency of public and patient awareness-building campaigns and expanded reach through digital and online channels supported by dedicated web portals containing educational resources. These initiatives have also refined their positioning to emphasize the gift of study volunteer participation, the personal relevance of clinical research, and the collective contribution of clinical research professionals.

In the early 2000s, most public service announcements focused on a specific breakthrough therapy and individual company contribution to science and innovation. Launched in 2017, the #GOBOLDLY campaign, initiated by PhRMA on behalf of America’s biopharmaceutical companies, presents stories highlighting the bold risks that pharmaceutical and biotechnology organizations have taken to develop new treatments that improve medical conditions and public health. TransCelerate’s 2018 One Person Closer campaign (@OnePersonCloser) features stories of clinical researchers, healthcare professionals, and patients to personalize the clinical research experience and demonstrate the partnership that must exist between them. The One Person Closer campaign has been featured and discussed in past Applied Clinical Trials articles.

Do Not Go Gentle. #GOBOLDLY - TV

 

Since its founding, CISCRP has developed several PSAs. In 2007, CISCRP launched the PSA “Medical Heroes Can Be Found in Everyday Places.” When it was introduced, Eli Lilly ran the campaign concurrently with traditional patient recruitment efforts. In separate pilots, Lilly observed a 38% increase in monthly enrollment rates when a radio Medical Heroes PSA was run concurrently and a 140% increase in monthly enrollment rates when radio and TV Medical Heroes PSAs were used. Both CISCRP programs have been written about extensively in past Applied Clinical Trials articles.

In partnership with USA Today, CISCRP now produces a supplement every six months with individual patient stories, educational content, messages of appreciation from pharmaceutical companies (e.g., Merck & Co., Pfizer, Biogen, TransCelerate, and Lilly). 

Looking ahead

CISCRP has learnt a great deal about how to improve the effectiveness and reach of our awareness—and clinical research literacy—building initiatives. Progress and success are due to many factors, including engaging patients and the local community around highly personal and relevant positioning; establishing customized programs in the heart of individual communities; connecting national and local outreach; leveraging a wide range of communication channels with print, digital and social media formats; coordinating and integrating educational programs and resources; maintaining frequency and continuity of messages; and enabling the integral patient-professional relationships.

The objectives of awareness and clinical research literacy are no longer to primarily increase patient recruitment rates. They have evolved to accommodate patient needs to influence and be a part of each patient’s healthcare and treatment decisions; build confidence and a personal sense of control in one’s own health journey; enable key stakeholders to facilitate participations; to elevate appreciation for all study volunteers; and to demonstrate the personal relevance of clinical research participation.

Abridged article of “New Models to Raise Public and Patient Awareness” which was published in Applied Clinical Trials, March, 2019.

 

The Center for Information and Study on Clinical Research Participation (CISCRP) is a non-profit organization founded in 2003 and dedicated to educating the public and patients and to engaging these critical stakeholders as partners in the clinical research process. CISCRP provides a variety of award-winning and internationally recognized educational resources, programs and services including print and digital materials; media outreach and awareness campaigns, live educational events; study volunteer appreciation programs; patient advisory boards and custom research assessing patient health journeys and study volunteer experiences; and plain language clinical trial results summaries. For more information - www.ciscrp.org.

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