We have been increasingly hearing about the need to include patient representatives in our clinical trials. “Patient engagement” has become the buzz word of the decade. But what does it really mean, and how is it best accomplished? It’s time to stop paying lip service to this concept, and truly partner with our patients in not only their care, but in the development and conduct of clinical trials.
This session, on Saturday, December 5th, is chaired by Ms. Cynthia Chauhan, a patient with HFpEF from Wichita, KS, USA, and Ms. Penilla Gunther, a heart transplant patient, former member of the Swedish parliament, and the founder of Parliamentarian Network for Equal Care in Stockholm, Sweden. Check out their blogs here and here.
The goal of this session is to understand the true value of patient trialists by hearing from actual heart failure patients and patient advocates, from around the world, including: Rhonda Monroe (Martinsburg, USA), Patricia Vlasman (Amsterdam, NED), Jayna Williams (New Hampshire, USA), Jacqueline Alikhaani (Los Angeles, USA), Marietta Verbakel (Nijmegen, NED), Marc Bains (Vancouver, CAN), Robin Martinez (Denver, USA), and Patrick Gee (Chesterfield, USA).
They will share their personal stories, and experiences counselling other patients to enrol in and persevere with clinical trials. Through this you will get a thorough appreciation of how to incorporate patient engagement from conceptualization through completion of every trial.
Other topics will include a discussion of quality of life indexes, and how to measure and truly improve patient well-being, as well as strategies to encourage diversity in trial participation. Finally, learn how to translate trial language and effectively communicate with patients.
The patient panel will be joined by cardiologists, nurses, and other clinicians for the moderated, multi-stakeholder, expert panel debate, titled: “Patient Trialists and Clinician Trialists Dialogue.” Come weigh in on the issue of mandatory sharing of trial results.