Aaron Kamauu MD MS MPH’s Post

Post Marketing Observational Studies (PMOSs) are essential for gathering real-world data that standard clinical trials often miss. They provide insights into everyday patient experiences and help researchers study rare events by collecting retrospective data to identify probable causes. PMOSs bridge the gap between controlled trials and real-life outcomes, offering valuable information for improving patient care. #HealthcareResearch #CebisInternational #PostMarketingObservationalStudies

New episode! In this fourth installment of "From Chaos to Clarity: Navigating Health Data," Heather Grey, SVP/GM Real World Data and Clinical Trials, and Lindsey Tornabeni (Klein), VP of Strategic Partnerships, Real World Data and Clinical Trials, highlight the biggest challenge in health data management—data from diverse sources that lack uniformity. In oncology, this issue affects everyone, from researchers and clinical trial investigators to clinicians making critical treatment decisions. Learn how Omega Healthcare CurateIQ tackles these challenges head-on. #HealthData #OncologyResearch #DataManagement #HealthcareInnovation #CurateIQ

Greenphire is making headlines with the launch of the industry’s first comprehensive #PatientExperienceDataset! 🌐 This is a game-changer for #ClinicalTrials, offering insights that can transform the way you plan, budget and execute the optimal patient experience. 🔗Check it out to read the full article: https://bit.ly/3L8VmwE

Advanced technology and medical data can be confusing for patients, their caregivers, and healthcare providers. 👉 Our newest study looks at how patients and healthcare professionals talk about these complex tests and treatments and what areas need more research to improve communication in this field of personalized cancer care. Access the full publication here: https://bit.ly/43DyXQn & don't forget to share it with your network! And, as you dive into the paper, take a look our library of #patientexperiences, as they allow us to understand better the barriers to accessing targeted treatments, discover best practices, and see key differences between patient experiences in precision medicine: https://lnkd.in/dt95v3vS 👀 𝙏𝙝𝙚 𝙥𝙝𝙤𝙩𝙤 𝙞𝙨 𝙛𝙧𝙤𝙢 𝙡𝙖𝙨𝙩 𝙮𝙚𝙖𝙧'𝙨 𝙘𝙤𝙢𝙢𝙪𝙣𝙞𝙩𝙮 𝙢𝙚𝙚𝙩𝙞𝙣𝙜 𝙞𝙣 𝙈𝙖𝙙𝙧𝙞𝙙 💚

Last Wednesday we had a conversation with Brent Clough, CEO at Trio Health and a significant background in financial support and development of meaningful software solutions (e.g., for oncology clinical workflows and RWD), as we discussed the Trio Health model that moves beyond continuous RWD collection, leveraging custom disease networks in order to "understand real-world patients, we must measure how each stakeholder impacts real-world patient performance." If you missed it, you can now listen to the podcast episode on our website: https://lnkd.in/gbpGRjHY Brent Clough Matt Veatch Aaron Kamauu MD MS MPH Please check-out our website to join the club, get updates and see other podcast recordings: https://rwd-rwe.club #realworlddata #rwd #realworldevidence #rwe #datascience #clinicalresearch #drugdevelopment #healthcareanalytics #clinicaltrials #drugdevelopment #medicalinformatics #EHR #electronichealthrecords #EMR #electronicmedicalrecords #operationaldefinitions #computableoperationaldefinitions #codef #computablephenotypes #computablemeasures #measurelibrary #trialtokenization #triallinkage #augmentedtrials #datalinkage #digitialhealth

In this #AskDrDurie video, #myeloma expert Dr. Brian G.M. Durie discusses what should be done if a patient relapses while in a clinical trial. https://lnkd.in/gmRw3Raq

📢 We are pleased to share that during the 𝗔𝗻𝗻𝘂𝗮𝗹 𝗦𝗰𝗶𝗲𝗻𝘁𝗶𝗳𝗶𝗰 𝗖𝗼𝗻𝗴𝗿𝗲𝘀𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗜𝘁𝗮𝗹𝗶𝗮𝗻 𝗠𝗦 𝗦𝗼𝗰𝗶𝗲𝘁𝘆 (AISM ) and 𝗶𝘁𝘀 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻, an important session dedicated to the PROMS Initiative was held. This event, titled “𝗕𝗿𝗮𝗶𝗻 𝗛𝗲𝗮𝗹𝘁𝗵: 𝗥𝗲𝘁𝗵𝗶𝗻𝗸𝗶𝗻𝗴 𝘁𝗵𝗲 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗼𝗳 𝗠𝘂𝗹𝘁𝗶𝗽𝗹𝗲 𝗦𝗰𝗹𝗲𝗿𝗼𝘀𝗶𝘀 𝗮𝗻𝗱 𝗥𝗲𝗹𝗮𝘁𝗲𝗱 𝗗𝗶𝘀𝗼𝗿𝗱𝗲𝗿𝘀,” provided a valuable opportunity for engagement and discussion among PROMS members.   The session, “𝗧𝗵𝗲 𝗥𝗼𝗹𝗲 𝗼𝗳 𝗣𝗮𝘁𝗶𝗲𝗻𝘁-𝗚𝗲𝗻𝗲𝗿𝗮𝘁𝗲𝗱 𝗗𝗮𝘁𝗮,” explored how patient-generated data is revolutionizing our understanding of #𝗺𝘂𝗹𝘁𝗶𝗽𝗹𝗲𝘀𝗰𝗹𝗲𝗿𝗼𝘀𝗶𝘀 and enhancing patient care. We had the privilege of hearing insightful presentations from esteemed experts, including Xavier Montalban, Mario Alberto Battaglia, Daniel Ontaneda, Helga Weiland, Giampaolo Brichetto, Giancarlo Comi, and Florian von Raison, MD. The concluding discussion, “𝗧𝗵𝗲 𝗣𝗮𝘁𝗵 𝗙𝗼𝗿𝘄𝗮𝗿𝗱 𝘁𝗼 𝘁𝗵𝗲 𝗙𝘂𝘁𝘂𝗿𝗲 𝗔𝗴𝗲𝗻𝗱𝗮 𝗮𝗻𝗱 𝗙𝘂𝗿𝘁𝗵𝗲𝗿 𝗦𝘁𝗮𝗸𝗲𝗵𝗼𝗹𝗱𝗲𝗿𝘀’ 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻,” was skillfully led by Tim Coetzee and Paola Zaratin.   For those who could not attend in person, the complete presentations, including slides, are now available for review. You can watch the recorded sessions and access the slides at the following link ➡ https://lnkd.in/ep-GMu7a (from 4:32:00 to 7:10:00)   This session was an invaluable moment for sharing insights and advancing our collective efforts in multiple sclerosis research and patient care. We look forward to continued collaboration and innovation as we explore new horizons in understanding and diagnosing multiple sclerosis.   #MultipleSclerosis #MSResearch #PatientCare #DigitalHealth #PROMS #HealthcareInnovation #ClinicalResearch

Increase your trial patient pool. MediPro Direct will go to patients with extreme illness or limited mobility in order to include them in your research. By adding some DCT Elements to your trial everyone wins! #decentralizedclinicaltrials hashtag #clinicalresearch hashtag #patientengagement hashtag #patientcentricity hashtag #oncologyresearch hashtag #diversityequityinclusion hashtag #healthequity

📈 Presented at #SOHO2024: Luspatercept use in #MDS is associated with fewer patient visits and less resource use compared with ESAs. 📚 Read more about the abstract led by Brian Ball, MD, of City of Hope. ➡️ https://buff.ly/47cRFQQ

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