2 posts tagged “clinical trial awareness”

Partnering with patients: An interview with Michael Evers and Ken Getz

Posted June 20th, 2013 by

PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) recently announced a new partnership with the global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials.

Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe, and Ken Getz, Founder and Board Chair of CISCRP and an associate professor at the Tufts University School of Medicine, share their views on why spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge) and increasing awareness about clinical trial opportunities will help get the best medicines to patients faster.

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Michael Evers                           Ken Getz


What’s this partnership all about?

ME- Given our missions and beliefs in the power of clinical research, it simply made sense for our three companies to collaborate. It’s an exciting alliance – and the first for PatientsLikeMe where we’re partnering with a pharma leader like Sanofi and a nonprofit like CISCRP to do a widespread awareness campaign on the power of research participation. For example, with our 200,000-member community and Clinical Trial Awareness tool, we’ll be able to match patients with relevant Sanofi trials and work with CISCRP to provide educational materials about the clinical trial process. Similarly, our partners are interested in directing their clinical trial participants to PatientsLikeMe where they can use tools to better manage their disease while participating in real-time research every day. Like I said, there was a lot of synergy here.

KG- We all share the same goal – to empower patients with information that helps them make informed decisions about whether to participate in clinical research and ultimately to ensure that the right treatments make it to the patients who need them in an efficient manner. This partnership is really about an integrative approach to empowering patients through closer collaboration with research sponsors, patient networks and a nonprofit educator.


Can you tell us a little about these “Medical Heroes?”

KG- CISCRP launched this groundbreaking public service campaign back in 2008 to portray the image of the clinical research participant as a Medical Hero. The Medical Heroes campaign provides recognition for the profound “gift of participation,” while raising awareness of the participant’s significant contributions to advancing public health. Clinical study volunteers are medical heroes found in ordinary, everyday places. Even though they advance public health, these medical heroes are under-acknowledged and under-appreciated.

ME- The Medical Heroes campaign that CISCRP has developed is so powerful. It’s an inspirational way to show how people’s participation in clinical trials is such a selfless gift and crucial part of advancing medicine for everyone. What struck a chord with us is how well this campaign described many of our members – those who participate in real-time research every day by logging onto PatientsLikeMe and sharing data about their experiences.


What else do you want people to know about this partnership or what’s ahead?

KG- It’s widely known that clinical trials are less efficient and are taking longer to complete. Patient recruitment and retention is extremely challenging and a major contributing factor to study delays. The main goal of this collaboration is to leverage the power of interactive communities with outreach and educational materials to truly engage patients as partners in advancing medical knowledge. Ultimately, we hope that this collaboration will demonstrate a new approach to improving recruitment and retention rates and to help reduce study delays. The patient is waiting for new and better treatments – and expects this from all of us.

ME- Ken said it well – this is all about engaging patients as partners. That’s the only way we can get to better research, better treatments and better medicine. The more Medical Heroes there are contributing to research, the faster we can get there. That’s a win for everyone.

PatientsLikeMe and CISCRP Team Up with Sanofi to Spotlight Medical Heros and Clinical Trial Participation

Posted May 13th, 2013 by

CAMBRIDGE, Mass.— May 13, 2013—PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) announce a new partnership with global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials. The partnership will focus on: spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge); increasing patient awareness about clinical trial opportunities; and advancing PatientsLikeMe’s mission to accelerate research by analyzing patients’ real-world disease experiences.

The partnership will utilize the PatientsLikeMe’s Clinical Trial Awareness tool to match patients with relevant Sanofi clinical trials and CISCRP’s educational materials to inform patients and their support network about the clinical research process. Through the tool, patients can search for and be notified about trials based on age, sex, disease or condition, and location criteria.

As part of this collaboration, the clinical trial tool on PatientsLikeMe will become part of Sanofi’s clinical trial recruitment process for a range of conditions, including asthma, cardiovascular disease, diabetes and oncology. Additionally, the partners will work together to raise awareness among doctors of the benefits of clinical trials for their patients. This collaboration adds to CISCRP’s expansive outreach and education channel, including clinical research and health professionals, disease advocacy groups and patient communities.

“Tens of thousands of people are actively engaged in monitoring their health and sharing their experiences on PatientsLikeMe,” says PatientsLikeMe Co-founder and Chairman Jamie Heywood. “They’re not just helping each other, but contributing directly to research. They are heroes in the truest sense, ideal partners for medical discovery, and the best source for real-world, real-time evidence.”

“An integrative approach that combines patient education with recruitment communication is essential to engaging informed study volunteers,” says Ken Getz, CISCRP’s founder and chairman. “We’re very excited about our involvement in this groundbreaking collaboration.”

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

The Center for Information and Study on Clinical Research Participation (CISCRP), now in its ninth year is a nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. CISCRP provides a broad portfolio of products and services to educate and engage patients and enhance the participation experience. For more information about CISCRP’s educational initiatives visit www.ciscrp.org.