Press Release: From Subject to Partner Publication

BOSTON, MA, April 25, 2022 – The Center for Information and Study on Clinical Research Participation (CISCRP), announces that it has produced and launched a special publication – ‘How Clinical Research is Engaging with Millions of us as Partners in Advancing Medicine.’ The publication marks the 20th anniversary of TIME Magazine’s article – ‘How Medical Testing has Turned Millions of Us into HUMAN GUINEA PIGS’, and celebrates progress made by patient communities and the public through two decades of engagement with the clinical research community. 

“The April 2002 TIME magazine issue was an inflection point denoting more rapid adoption of patient–centric practices in clinical research,” said Ken Getz, Founder of CISCRP and Executive Director and Professor at Tufts University School of Medicine. “It was also the impetus for CISCRP, a unique nonprofit education and advocacy organization whose mission is to inform and engage patients and the public around the world as partners in clinical research.” 

The main story in the commemorative publication, written by an award-winning journalist, spotlights a variety of initiatives that have been implemented 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 clinical research professionals. Among the initiatives spotlighted: virtual and remote technologies improving participation convenience and data collection, the return of plain language clinical trial results, and patient input panels informing protocol design. The publication also unveils a new cover graphic designed by the creative team at global agency RAPP and is intended to replace and rebrand the image of patients and the public as central and essential collaborators in the clinical research process. 

“You can’t speak for someone with a rare disease unless you’ve really been with them through it and been a part of it,” noted Julie Breneiser, who was diagnosed with Gorlin Syndrome (a rare genetic disorder) and serves as Executive Director of the Gorlin Syndrome Alliance. 

“The burden of a clinical trial has to be balanced against the patient’s experience living with a disease or condition,” explained Kim Down, National Institute for Health Research (NIHR). 

The commemorative publication is available for download free of charge at www.from-subject-to-partner.org  and print copies are available upon request.