National Infusion Center Association (NICA)’s Post

🌍 Building a Healthier World Together: Introducing Our Patient Community Charter 🤝 After consultation and input from over 80 patient advocacy groups, patients and carers from around the world (and much internal discussion too), I'd like to share Sanofi's Patient Community Charter. The Charter formalizes our commitments and sets the stage for greater accountability. Our aim is to continuously consult, involve, and work alongside these communities to ensure we deliver on our promises. It focuses on four key areas: 🔬 Developing Medicines and Vaccines that reflect patient priorities and unmet needs, ensuring that our products address real-world challenges. 🤝 Partnering with Advocacy Communities to better support them and the people they represent. We actively engage with advocacy groups, supporting and amplifying their efforts to improve patient care. 💡 Leveraging Real-World Insights: we improve and adapt our medicines and vaccines through real-word patient and health community insights by listening to patients and healthcare communities. ⚕️ Advocating for People-Centered Healthcare: We champion the creation of patient-centric healthcare systems that prioritize individual well-being. And, because we are committed to transparency, we'll aim to regularly report on our progress towards these goals. To learn more about our Patient Charter click here: https://lnkd.in/e9mZN8Tm Well done to Kersten Sharrock, M.S. Laura Gutierrez and all of the team 🌟 If you have feedback, please don't hesitate to send it on. We are always learning.

First Report Managed Care Volume 21, Issue 2, Asembia Insights: In our recent First Report Managed Care issue, experts discuss the importance of incorporating patient voices into health care decision-making, which they reviewed at ASX24. Learn more about opportunities for collaboration and enhancement in drug development and patient coverage in this interview with Jasmine Patel, MPH, Senior Principal, Patient Advocacy, Strategic Consulting at Envision Pharma Group, and Jessica Krauser, Marketing Advisor, Envision Pharma Group; Founder of 5kforJK. #FirstReportManagedCare #FRMC #managedcare #drugpipeline #AXS24 #Asembia 

Many patients lack awareness or have limited understanding of available patient support programs, hindering their participation and utilization of these resources. Effective communication and education strategies are needed to address this gap. By leveraging solutions as TeqNext AI for PSP, healthcare providers and pharmaceutical companies can disseminate information more effectively and engage with patients in meaningful ways. It's crucial to develop tailored educational materials, conduct outreach initiatives, and foster strong partnerships with patient advocacy groups to raise awareness. Together, we can ensure that patients have the knowledge and support they need to fully benefit from these invaluable programs. Let's work towards a future where no patient is left behind due to a lack of information. #Healthcare #patientsupport #patienteducation #patientengagement

Success in generics and biosimilars is not just about developing and manufacturing affordable, high-quality medicines. It’s essential to understand patient needs and perspectives. That’s why we involve the perspectives of the patient community in our work at Sandoz to pioneer access for patients. Last week, our Global Director, Patient Communications and Engagement Izlen Toker spoke at the Patient Engagement Conference in Amsterdam about authentic patient advocacy and Sandoz’ approach to patient engagement. Follow us to learn more about our commitment to working with patients in mind.   #PatientAdvocacy #WithPatientsInMind #Sandoz

Building the standard. What does good look like in patient advocacy and how can we support teams with measurements and metric that matter to underserved communities. #healthequity #healthdisparities #patientadvocacy #patientcenteredcare #pharmaceuticalindustry #patientoutcomes

It was a great honor to speak on 5th Patient Centricity & Collaboration Conference on our collaboration with patient advocacy groups to raise awareness and improve lived experience with a rare conditions to make more people smile. Learned a lot from other speakers about the importance of collaboration with people affected by conditions and there should be no excuses to start this work earlier and wider.   Patient Centricity & Collaboration World Congress Europe (patientcentricityworld.com) #patientcentricity #patientengagement

Boosting patient recruitment pipelines and collaborating with clinical trial teams can be challenging, but patient advocacy organizations can help. With a modest investment of effort and a well-thought-out approach, these organizations can be an invaluable resource. Discover how to better collaborate with patient advocacy organizations to achieve mutually beneficial objectives by reading this article by Harbor Clinical: https://lnkd.in/evNyqs3U #PatientAdvocacy #ClinicalTrials #Collaboration

Pfizer Albert Bourla Patrick van der Loo Kevin Francis Peter Wharton-Hood eNCA NEWS 24 Office of the Ombudsman Ombiomedic pharma Life Healthcare Netcare Johnson & Johnson Aspen Pharma Group Patient Advocate International Patient Advocate Kerry Mitchell RD, CDCES, Coach Director Patient Engagement Patient Advocacy Lighthouse Patient Advocacy, LLC , Gail Gilberto Forbes Advisor #accountabilitymatters#Pfizer 🚨 In 2021, I reported an adverse event related to a Pfizer product, and initially, I thought it was just an oversight and error on their part. However, things took a troubling turn when I escalated the matter to CEO Kevin Francis, and he ignored my concerns. His response, when it came, was accompanied by threats and a refusal to be accountable for compliance with adverse event reporting. Months later, SAHPRA confirmed Pfizer's non-compliance with their recommendations, yet there was still no contact from Pfizer. I decided to escalate my concerns to Kevin Francis's boss, Albert Bourla, and sadly, a similar pattern emerged. It's disheartening to realize that this may not be an isolated incident but rather a reflection of a deeper culture within Pfizer. Is this an organization that prioritizes compliance and patient safety, or is it corrupted to its roots and DNA? Healthcare professionals, how do you feel about prescribing Pfizer drugs to your patients in light of these concerns? Patient safety should always be our top priority, and it's vital to have confidence in the companies we trust. 💊 #PatientSafety #PharmaAccountability #PfizerConcerns Regenerate

In the intricate landscape of MPN research and development, the patient voice is not just valuable — it's indispensable. Sharing personal journeys empowers those affected by MPNs by fostering a sense of community. At the same time, it equips researchers, clinicians, and biopharmaceutical professionals with the nuanced insights necessary to tailor discovery and development efforts to meet genuine patient needs.  The era of underrepresentation of MPN patient voices is at an endpoint. We’re marking the dawn of a collaborative, insight-driven approach in our field. Stories like those from Ignacio and countless others are pivotal, enriching our collective endeavors and driving innovation in therapeutic solutions and treatment methodologies.  Join MPN Research Foundation in championing this collaborative ethos. Together, we can enhance the synergy between patient experiences and scientific expertise, accelerating our understanding and treatment of MPNs.   Stay informed and engaged with the latest advancements and insights in MPN research by joining our community today:

The Clinical Operations & Clinical Trial Supply Strategy Meeting on May 16th in Princeton brings Eve Dryer, a tireless advocate for patient engagement, for a crucial discussion on diversity and inclusion in clinical trials. Eve, a trailblazer with over 25 years of experience, recently retired as Vice President of Patient Advocacy at Travere Therapeutics. She's a founding member of the Rare Disease Diversity Coalition, actively working to bridge the gap in diagnosis and treatment for rare disease patients of color. We'll delve into the importance of engaging patient organizations from the very beginning of the research process. Effective strategies for reaching and enrolling underrepresented communities will be a key focus. Equipping Patient Advocacy Organizations (PAOs) with the resources to educate patients on the value of clinical trial participation is paramount. This session will emphasize incorporating patient input throughout the entire clinical trial process, from initial concept development to reimbursement discussions. We'll also explore the potential of decentralized trials to improve access and participation for geographically dispersed and underrepresented populations. Joining Eve will be Kathy Machuzak, another patient advocacy leader with extensive experience at Travere Therapeutics. Together, they promise an insightful conversation that will equip you to champion diverse voices in clinical research. Stay tuned for more! #ClinicalTrials #DiversityInClinicalTrials #PatientEngagement #EastCoastScience #EveDryer #KathyMachuzak #TravereTherapeutics