Healthcare Quality Improvement Partnership (HQIP)’s Post

FUN FACTS FRIDAYS The MMAS-8, originally developed by Dr. Donald Morisky and his colleagues, was initially created as a 4-item questionnaire. However, it was later expanded to the current 8-item version to provide a more comprehensive assessment of medication adherence. The additional items were developed to capture intentional non-adherence, providing a more nuanced understanding of patient behavior. This expansion has contributed to the widespread use and effectiveness of the MMAS-8 in measuring medication adherence. Here is a recent article that underscores the significance of employing the MMAS in managing rare diseases. It's crucial to emphasize that personalized, tailored educational counseling emerges as the most effective method not only for identifying barriers to adherence but also for devising strategies to enhance it. Where treatment protocols might be intricate and adherence is paramount, the utilization of validated tools like the MMAS becomes invaluable. By tailoring educational counseling to individual patients, HCPs can pinpoint unique challenges to adherence and collaboratively work with patients to develop personalized solutions. #medicationadherence #patientreportedoutcomes #clinicalresearch #mmas8 García-Muñoz, A.M.; Victoria-Montesinos, D.; Cerdá, B.; Ballester, P.; de Velasco, E.M.; Zafrilla, P. Self-Reported Medication Adherence Measured with Morisky Scales in Rare Disease Patients: A Systematic Review and Meta-Analysis. Healthcare 2023, 11, 1609. UCAM Universidad Católica San Antonio de Murcia Ana Mª García Muñoz Pura Ballester Navarro Desirée Victoria Montesinos Begoña Cerdá Martínez-Pujalte Eloisa Maria De Velasco Garcia PILAR ZAFRILLA RENTERO    

With key long COVID trials yet to yield results, people with the condition are trying to change how #clinicaltrials are done. In the past few years, patient-led efforts have helped to shape research programs on long COVID and kick off some early clinical trials of therapies that might otherwise have gone unexplored. Article: 'Long COVID still has no cure – so these patients are turning to research' https://lnkd.in/ddpUnMkx via Nature Portfolio #COVID19 #pandemic #clinicalresearch #patientadvocacy

For those attending POCMA NOW tomorrow, you will experience the passion and authenticity John Whyte brings to this important conversation. For those who will not be at POCMA NOW, stay tuned for highlights and reach out to me directly [email protected] to learn more about this conversation - and how you can apply the learnings to your marketing approach.

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of #pulmonaryhypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the latest guidelines jointly developed by the European Society of Cardiology and the European Respiratory Society (2022). This historic moment represents not only a significant advancement for the individual representatives but also a monumental stride for the entire patient community. It establishes a crucial precedent, as moving forward, all European Society of Cardiology guidelines will feature involvement from patient representatives, mirroring a growing trend across scientific societies. That is why we highly recommend participating in the webinar organised by the ERKNet | EURORDIS-Rare Diseases Europe on "Patient Involvement in Guidelines" by Matt Bolz-Johnson. 📆 Date: Monday, April 22 nd ⏱ Time: 17:30 - 18:15 CET 🖊 Sign up and join the webinar at https://lnkd.in/ekZRKZUr Matt's presentation will focus on how patients can best contribute in the development phase and how clinicians can encourage patient involvement. Matt joined EURORDIS-Rare Diseases Europe in 2014 and is active in a number of advocacy actions including the European Reference Networks, Mental Health; Advanced Therapies. At EURORDIS, he has been instrumental in the establishment of the ERNs, by leading the development of the assessment framework for the ERNs and also supporting the rare disease community to active in shaping the development and implementation of the European Reference Networks (ERNs). #PatientInvolvement #HealthcareGuidelines #Webinar #EURORDIS #ERKNet #Advocacy

project PROGRESS is on @the SC3 CAREgivers summit23. REGISTER: DESCRIPTION Patient Reported Outcomes to GRow Engagement among Sickle Cell Stakeholders (PROGRESS): Priority Setting for Patient and Caregiver Valued Outcomes. The purpose of this convening session is to engage sickle cell disease stakeholders to establish a standardized, patient-derived, and patient-prioritized list of the impacts of interventions and treatments beyond clinical outcomes. This effort will result in a guide for clinicians, researchers, and other stakeholders to target patient and caregiver-preferred patient-centered outcomes in healthcare services for sickle cell disease. Following the convening session, we will compare patient-preferred patient-centered outcomes with provider-preferred patient-centered outcomes. We will also distribute the summary through the project team’s dissemination networks #SCDCaregivers #BetterTogether

🩸March is Deep-Vein Thrombosis (DVT) Awareness month.🩸 #CardinalHealth is proud to sponsor a #VTEPrevention webinar hosted by Becker's Healthcare this Thursday, March 28th at 2-3PM EST. Join Dr. Amy Campbell, PhD, RN, as she discusses an innovative clot-busting program highlighting best practices to prevent VTE.   Topics to be covered:   💡Discuss the pathophysiology of venous thromboembolism (VTE) and how to refresh staff education 💡Map the patient experience at your facility, identifying any key challenges in the process 💡Create a unique clot-busting program solution and set metrics for improvement success   For Healthcare professionals only. This webinar is offered in English only. Register now at no cost: https://lnkd.in/ge_S93_3

The "Guide to developing a Patient Journey", published in March 2024 by EURORDIS-Rare Diseases Europe, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing "Patient Journeys" for their respective rare conditions. What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of a rare condition and the unique needs of patients by delving into their day-to-day experiences and perspectives. Through this patient-driven lens, they identify common unmet needs, addressing healthcare gaps, and improving health services by focusing on the daily life of individuals living with the condition. Patient journeys offer a structured approach for patient representatives within European Reference Networks (ERNs) to engage with their communities, identifying common needs for each condition. EURORDIS, along with patient representatives and clinicians in ERNs, are actively promoting the implementation of the Patient Journey approach across all rare conditions, empowering patients to shape care pathways based on their lived experiences. How is this relevant for #pulmonaryhypertension patients? The European Reference Network for rare pulmonary diseases ERN-LUNG - European Reference Network for rare respiratory diseases has a core network dedicated to this condition, led by Prof. Marc Humbert, and five pulmonary hypertension patients/patient representatives sit on the ERN-LUNG Patient Advocacy Group! See the list at this link: https://lnkd.in/dieSgfa9 Hall Skaara PHA Europe Natalia Maeva PHA Europe Gergely Meszaros JD, MSc Tüdőér Egylet Luc MATTHYSEN HTAP Belgique Pisana Ferrari Alliance for Pulmonary Hypertension https://lnkd.in/dtuDT9NG

Recent findings from a comprehensive survey have highlighted a significant demand among UK patients for enhanced access to early and accurate diagnostic testing. As healthcare continues to evolve, the imperative for timely and precise diagnostics becomes increasingly apparent. It is crucial that the medical sector responds to this call, ensuring that patients are not only heard but also provided with the facilities and services that are key to early detection and effective treatment management. 🩺🔬 The survey underscores a growing awareness among patients about the vital role diagnostics play in their healthcare journey. In this era of personalised medicine, diagnostics are instrumental in tailoring treatment plans to individual needs, thereby optimising outcomes. Healthcare providers and policymakers must, therefore, prioritise investment in diagnostic technologies and streamline processes that can reduce waiting times and potential uncertainties in medical prognoses. 🚑🧬 Action in this arena necessitates a collaborative approach, bringing together the public sector, private healthcare providers, and diagnostic innovators. Together, we can bridge the gap between patient needs and healthcare delivery, fostering a system that champions early diagnosis and swift action. By doing so, the journey towards recovery and wellness can begin on the strongest possible foundation for patients across the UK.🤝✨ #HealthcareInnovation #PatientCare #DiagnosticTesting

Please join me for a great discussion on how to build your clot busting program and improve your patient outcomes!!

🩺 Simulation: A Prescription for Safer Healthcare Diagnostic errors have far-reaching consequences for patients. The report by Johns Hopkins Medicine underscores their public health impact. Full report here: https://lnkd.in/gqhuTPgQ Simulation training is the antidote to reducing medical errors. It allows healthcare providers to practice and perfect their skills, ultimately leading to better patient care. Let's raise awareness about this critical tool for a safer healthcare system! #SimulationSolutions #PatientCare #HealthcareImprovement