Human Advocate for Equity in Access and Informed Decision Making | Integrity, Ethics, Inclusion and Transparency by Design | Enabling Co-Creation for a Healthier Future for all | Global R&D Collaborations | Convergence
The star of the show isT.J. Sharpe and the reality of why we are still having this exhaustive conversation... is because of courageous humans like you and bewildered humans like me! Thank you so very much for changing my focus when I heard you speak for the first time almost 9 years ago. There is simply no more appropriate perspective than the lived human clinical trial participant and healthcare human experience in demonstrating the WHY NOT!! Informed decision making requires a commitment to ensuring the timely sharing of linked health data generated by patients/study participants wherever they are on their care journey and helps all stakeholders understand the patient experience, the evolution of patient safety, product effectiveness over time and valuable evidence generation. Solutions to ensure a risk-based, meaningful, pro-active, ethical approaches/options for the return of individual participant data and lay summaries demonstrates reciprocity, respect and partnership, requires global harmonization and flexibility and has the ability to transform the cultural thinking about what is possible when we critically think and re-think about our shared mutual objectives, reducing burden on health systems and patients to accelerate medicines development. Essential to ensuring the sustainability of R&D and improving global health equity. Providing pragmatic personalized options which matter most to patients and their care providers and securing mechanisms that will facilitate the convergence of clinical care and clinical research is no longer an option. #DIA2024 Session #373 Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Innovative Health Initiative (IHI) Facilitate Project TransCelerate BioPharma Inc. Society for Clinical Research Sites (SCRS) CISCRP #pfdd #CRACO #Collaborating with #patients to enable a healthier future for all. Enabling #innovation and #equity ambitions through co-creation and global collaboration. #datasharing #patientsaspartners #healthinformation #bioethics
Patient engagement clinical research advocate expert with a decade+ of industry-advocacy experience. Stage IV melanoma survivor. Keynote speaker. JV football coach.
Coming to #DIA2024? Mark session #373 on your Wednesday calendar for the one-time-only showing of "Patient-Centric Approaches in Summaries and Data Return" starring Jean Stimola-Sposaro, MSJ, with yours truly riding shotgun on this docu-drama focused on "How in the world is information return STILL not happening and WHAT the heck are we doing about it?" Featuring the work of TransCelerate BioPharma Inc., Clinical Trials Transformation Initiative (CTTI), Innovative Health Initiative (IHI), Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center), and others. Get your 🍿 !! https://lnkd.in/eYhJEmry #PatientDataReturn #IRR #RoR #LaySummaries
Patient engagement clinical research advocate expert with a decade+ of industry-advocacy experience. Stage IV melanoma survivor. Keynote speaker. JV football coach.
4moCan't wait to share the spotlight!