Participant Engagement

Participant Engagement

Patients bring value to clinical research beyond their participation in trials—they should be involved as partners in every stage of the research process.

Our Thinking

Too often, the full potential of patients gets overlooked throughout the process of designing and implementing clinical research. We believe that patients are our partners in research and should be involved in every phase of clinical trials, from research design to the dissemination of study findings.

Tapping into the perspectives and insights of patients and study participants can make all the difference between success and failure in clinical research. A forward-thinking approach to trials planning ensures that all stakeholders are engaged so that the right questions are asked during study design, feasibility, recruitment planning, and beyond.

Elizabeth Fraulo
Senior Director, Operations
Health Services Research

"What if we actively engaged patients and made them partners in every stage of our research?"
Beth Fraulo

Highlights

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Exploring the Ethics of Patient-Centered Research

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Laura M. Beskow, PhD, MPH, and her team recently supported a study with data gathered from hundreds of participants to assess patient perspectives on the use of their electronic health records for research and on acceptable approaches to informed consent.

Informed consent is a major focus for us at the DCRI. Our goal is to help patients make decisions about participating in research that are right for them.

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Listening to the Patient

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Adrian Hernandez, MD, DCRI cardiologist and principal investigator, and Patient Partner Lesley Maisch discuss how patients are redefining the way clinical trials are conducted in the context of the PROSPER trial.

Want more from Adrian and Lesley on the power of patients and the value of their feedback? Read their blog post.

How Patient Engagement Leads to Advances in Healthcare

VIDEO

Former FDA Commissioner, Robert Califf, MD, discusses how direct engagement with patients can lead to greater advances in research and healthcare.

Collaboration

The Clinical Trials Transformation Initiative (CTTI) is a public-private partnership to identify and promote practices that will increase the quality and efficiency of clinical trials. Once a specific aspect of the clinical trials process is targeted for improvement, the CTTI establishes a project in order to more thoroughly explore the various elements that create the issue at hand, as well as novel solutions for it. CTTI’s membership now comprises more than 60 organizations from across the clinical trial enterprise, and it is this diverse representation of stakeholders that makes the CTTI uniquely positioned to innovate through collaboration. CTTI projects result in a variety of deliverables, or products, which can then be used to promote adoption and implementation of the ensuing recommendations.

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People

Linda Davidson-Ray
Project Leader, CONNECT-HF

"I am proud that the DCRI is leading the way in involving patients from day-one in its studies. As the project lead for our CONNECT-HF study, I work directly with our patient steering committee—the Cardi-Yacks. From the informed consent form to improving communication with physicians, by sharing their experience, our study participants are helping to design more effective and efficient studies."

Linda Davidson-Ray
Project Leader, CONNECT-HF

"... by sharing their experience, our study participants are helping to design more effective and efficient studies."
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