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Looking to the past reminds industry of great strides taken in clinical research for patients.
On April 22, 2002—twenty years ago—TIME magazine dedicated an issue to exposing the dangerous and undignified experience of being a subject in clinical research. Many of us can recall the shocking cover image showing a woman in a hospital gown, cold, alone, and vulnerable. Her arms were crossed as she huddled in an animal crate with a feeding bottle dangling above.
The title on the cover—‘How Medical Testing has Turned Millions of Us into Human Guinea Pigs’—conveyed what the reader could expect. And the feature stories inside—with the titles: “At Your Own Risk”; “Poisoning for Dollars”; “They’re Dying to Get In’—delivered.
The truth in that now iconic magazine cover and its feature articles surprised and stung professionals throughout the clinical research enterprise. Many believed that the compassion, ethical conduct, integrity, and expertise that they brought to their relationships with clinical trial participants was sufficient. In the months following release of the TIME issue, the reaction was muted and insular. There was some discussion and debate at trade conferences and in professional society meetings. In a few meetings, the TIME magazine journalists were invited to speak and they were often confronted by members of the audience who denied the insinuations.
Sadly, no one came to the defense of the woman in the cage.
There was no effort to rectify this image of clinical trial volunteers: to view them not as helpless and passive subjects in scientific experiments but rather as ordinary people who have bravely chosen to give the gift of their participation to help advance medical knowledge that benefits us all.
That TIME issue—and the ensuing response (and lack of response)—ultimately served as a rallying cry for many individuals and organizations who recognized that we can and must do better. Indeed, it inspired the creation of our unique non-profit education and advocacy organization—the Center for Information and Study on Clinical Research Participation (CISCRP). Founded in 2003, CISCRP’s mission and passion is to change the way the world views and recognizes clinical trial volunteers and to engage patients and the public as partners in clinical research.
To mark the 20th anniversary of that TIME magazine issue, CISCRP has created a special publication commemorating the patient engagement movement and its progress. This publication—entitled: ‘How Clinical Research has Engaged with Millions of Us to Advance Medicine’—acknowledges the diverse community of clinical research stakeholders that have mobilized and implemented new initiatives, guidelines, policies, practices and solutions to amplify patient voices and needs; educate the public; improve transparency and disclosure; enrich the clinical trial participation experience; and promote collaboration between patients and the clinical care and clinical research communities.
This special publication also features an impactful new cover image designed to replace that of the original TIME issue and rebrand clinical research participation. The new cover shows the lock on the animal crate broken and lying on the ground; the door of the once confining cage thrown open with no one left inside. The women, now twenty years older, with a study volunteer and a research professional behind her, stands proudly above the cage, informed, and empowered to manage her health journey.
Other symbols on the new cover include communication technologies (e.g., iPad) and images of a home and offices where study volunteers can more conveniently and easily participate. And in the background, barely legible, only two letters from the TIME logo remain—‘ME’—to signal that each person’s health journey, their needs and preferences, are central and essential.
It is our hope that this special publication will be circulated widely and that it will help to raise awareness and educate us all on the many ways that we can contribute to actively and meaningfully engaging with the clinical research process today. Please download your free copy of this commemorative publication and please feel free to share the link.
Looking back it is clear that we have made great strides in the decades-long global movement for patients in clinical research—from subjects to partners—and there is so much more to be done!
Ken Getz, Caroline Casey, Joan Chambers, Annick de Bruin, Jill McNair, and the CISCRP Team