We helped a programme targeting ex-smokers with lung health checks to complete information governance procedures and ensure personal data is protected. Background The Targeted Lung Health Check (TLHC) Programme team at Lancashire and South Cumbria Integrated Care Board (ICB) needed help with information governance (IG). The health checks are offered to current or ex-smokers aged 55-74, aiming to diagnose and treat lung conditions, often before symptoms appear. This was part of a national pilot study, and the entire project needed a Data Protection Impact Assessment (DPIA). The main challenges were the number of stakeholders involved and the tight timescales dictated by the national team. Action We helped the ICS understand why and how to complete a DPIA. Where some decisions had not yet been made (for example system suppliers and clinical providers), our expert team shared their insights and recommendations to ensure the project team could move forward quickly once decisions were made. The multi-agency project meant that multiple DPIAs were required, but we advised that the best approach would be to map and assess the project from end to end. This gave the ICS the confidence that all data protection risks would be identified and managed, and meant that a single robust DPIA could be completed for the entire project. Impact Although the project was fast-paced, we kept up with the key dates and ensured sufficient risk assessments were completed at every stage. By providing expert advice on data sharing and processing across all partner organisations, we ensured that individuals’ rights were not infringed. It was crucial that all stakeholders were able to understand the needs of the project. Our IG team took great care in explaining the key points in simple terms. This meant the IG teams at the local NHS trusts and the ICS had the confidence and assurance to support and progress the project. The team clearly detailed the project needs in a single DPIA document. As later versions needed to include different data controllers and processes, we used the tools and learnings from previous risk assessments to ensure that the clinical benefit was always at the forefront of these submissions. "By completing the DPIA for the entire project, the NHS ML IG team ensured that all data sharing and processing was mapped and all data protection risks were identified and mitigated. “All required versions of the DPIA were completed in line with the project live dates, and we were confident that the patients’ needs were always at the forefront of the project.” Anne Turner and Lisa Flanagan | Senior Programme Managers: Targeted Lung Health Checks https://lnkd.in/eHsWKYbb #data #health #nhs #informationgovernance #datasecurity #informationsecurity #impactassessment
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We helped a programme targeting ex-smokers with lung health checks to complete information governance procedures and ensure personal data is protected. Background The Targeted Lung Health Check (TLHC) Programme team at Lancashire and South Cumbria Integrated Care Board (ICB) needed help with information governance (IG). The health checks are offered to current or ex-smokers aged 55-74, aiming to diagnose and treat lung conditions, often before symptoms appear. This was part of a national pilot study, and the entire project needed a Data Protection Impact Assessment (DPIA). The main challenges were the number of stakeholders involved and the tight timescales dictated by the national team. Action We helped the ICS understand why and how to complete a DPIA. Where some decisions had not yet been made (for example system suppliers and clinical providers), our expert team shared their insights and recommendations to ensure the project team could move forward quickly once decisions were made. The multi-agency project meant that multiple DPIAs were required, but we advised that the best approach would be to map and assess the project from end to end. This gave the ICS the confidence that all data protection risks would be identified and managed, and meant that a single robust DPIA could be completed for the entire project. Impact Although the project was fast-paced, we kept up with the key dates and ensured sufficient risk assessments were completed at every stage. By providing expert advice on data sharing and processing across all partner organisations, we ensured that individuals’ rights were not infringed. It was crucial that all stakeholders were able to understand the needs of the project. Our IG team took great care in explaining the key points in simple terms. This meant the IG teams at the local NHS trusts and the ICS had the confidence and assurance to support and progress the project. The team clearly detailed the project needs in a single DPIA document. As later versions needed to include different data controllers and processes, we used the tools and learnings from previous risk assessments to ensure that the clinical benefit was always at the forefront of these submissions. "By completing the DPIA for the entire project, the MLCSU IG team ensured that all data sharing and processing was mapped and all data protection risks were identified and mitigated. “All required versions of the DPIA were completed in line with the project live dates, and we were confident that the patients’ needs were always at the forefront of the project.” Anne Turner and Lisa Flanagan | Senior Programme Managers: Targeted Lung Health Checks https://lnkd.in/eHsWKYbb #data #health #nhs #informationgovernance #datasecurity #informationsecurity #impactassessment
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We helped a programme targeting ex-smokers with lung health checks to complete information governance procedures and ensure personal data is protected. Background The Targeted Lung Health Check (TLHC) Programme team at Lancashire and South Cumbria Integrated Care Board (ICB) needed help with information governance (IG). The health checks are offered to current or ex-smokers aged 55-74, aiming to diagnose and treat lung conditions, often before symptoms appear. This was part of a national pilot study, and the entire project needed a Data Protection Impact Assessment (DPIA). The main challenges were the number of stakeholders involved and the tight timescales dictated by the national team. Action We helped the ICS understand why and how to complete a DPIA. Where some decisions had not yet been made (for example system suppliers and clinical providers), our expert team shared their insights and recommendations to ensure the project team could move forward quickly once decisions were made. The multi-agency project meant that multiple DPIAs were required, but we advised that the best approach would be to map and assess the project from end to end. This gave the ICS the confidence that all data protection risks would be identified and managed, and meant that a single robust DPIA could be completed for the entire project. Impact Although the project was fast-paced, we kept up with the key dates and ensured sufficient risk assessments were completed at every stage. By providing expert advice on data sharing and processing across all partner organisations, we ensured that individuals’ rights were not infringed. It was crucial that all stakeholders were able to understand the needs of the project. Our IG team took great care in explaining the key points in simple terms. This meant the IG teams at the local NHS trusts and the ICS had the confidence and assurance to support and progress the project. The team clearly detailed the project needs in a single DPIA document. As later versions needed to include different data controllers and processes, we used the tools and learnings from previous risk assessments to ensure that the clinical benefit was always at the forefront of these submissions. "By completing the DPIA for the entire project, the NHS ML IG team ensured that all data sharing and processing was mapped and all data protection risks were identified and mitigated. “All required versions of the DPIA were completed in line with the project live dates, and we were confident that the patients’ needs were always at the forefront of the project.” Anne Turner and Lisa Flanagan | Senior Programme Managers: Targeted Lung Health Checks https://lnkd.in/eHsWKYbb #data #health #nhs #informationgovernance #datasecurity #informationsecurity #impactassessment
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NICE's Review of the Severity Modifier – Key Insights for Market Access and HTA Recently, England’s National Institute for Health and Care Excellence (NICE) completed its review of the controversial severity modifier. NICE has concluded that no changes are needed to the severity modifier, introduced in 2022 to replace the End-of-Life (EOL) modifier. The severity modifier was designed to give broader, more equitable access to treatments for severe diseases by allowing for higher cost-effectiveness thresholds based on disease severity. The modifier operates in two tiers: a 1.2 multiplier for moderately severe diseases and a 1.7 multiplier for very severe conditions, raising the thresholds to £36,000 and £51,000 per QALY (quality-adjusted life year), respectively. The review, which included a comprehensive analysis of over 60 appraisals, found that the severity modifier has led to a higher proportion of positive recommendations compared to the previous EOL system—84.4% versus 82.7%. This means that more treatments are receiving positive appraisals, especially for diseases that may not have qualified under the old EOL criteria. For instance, the modifier has been applied to non-EOL conditions such as cystic fibrosis, chronic hepatitis D, and various forms of cancer, allowing for broader access. One of the key findings of the review is that the transition from the EOL modifier to the severity modifier has been "opportunity-cost neutral." This is an important point for market access, as it means that expanding access for severe conditions has not displaced care or compromised patient outcomes elsewhere in the NHS. NICE remains confident that the modifier is achieving its intended goals without inflating costs. Despite this positive outlook, some of the key industry stakeholders, including the Association of the British Pharmaceutical Industry (ABPI), have expressed concerns about the conservative application of the modifier. According to ABPI’s analysis, the average QALY weighting per topic since the introduction of the severity modifier is slightly lower than anticipated—1.073 compared to the projected 1.119 which was used by NICE to design the severity modifier. Nevertheless, NICE’s findings suggest that this hasn’t negatively impacted the overall rate of positive recommendations. Looking ahead, NICE has committed to further research on societal preferences regarding the weighting of health benefits for severe diseases. This research, set to begin in December 2024 and complete over the next two years, will inform future modifications and ensure the system continues to reflect public values. As market access experts, we understand how vital it is to stay informed about such HTA updates. At P4A, we are dedicated to helping our clients navigate the ever-evolving HTA landscape to optimise their strategies and ensure that patients receive the care they need. #MarketAccess #NICE #HTA #SeverityModifier Written by Angeliki Meletsi, Senior Analyst
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In 2003, the World Health Organization, via its Research and Training in Tropical Diseases (TDR) https://tdr.who.int/ programme, established criteria for developing diagnostic tests referred to as #ASSURED, an acronym for Affordability, Sensitivity, Specificity, User-friendliness, Rapid and robustness, Equipment-free, and Deliverability to end-users. This framework was developed to improve diagnostic capabilities in resource-limited settings. These settings often lack access to quality diagnostics, which impacts effective disease management and patient outcomes. In 2019, #ASSURED was extended to recognize the need to incorporate digital technology and mobile health with the addition of Real-time connectivity and Ease of specimen collection, creating an updated framework #REASSURED. The ultimate goal is to strengthen health systems by providing more effective and accessible diagnostics leveraging digital technologies, which are crucial for controlling diseases, especially in areas where infectious diseases remain prevalent or in epidemic conditions, as experienced with #COVID19. https://lnkd.in/gZsJPdEj In February 2023, the World Health Organization further emphasized this with a paper by the Executive Board entitled "Strengthening diagnostics capacity". "Recognizing that diagnostic services are vital for the prevention, diagnosis, case management, monitoring and treatment of communicable, noncommunicable, neglected tropical and rare diseases, injuries and disabilities;" https://lnkd.in/g2a2WfnR Over the 20 years since #ASSURED was introduced, advancements in diagnostic technology from a chemistry perspective, along with digital technologies including cloud computing, affordable edge computing, image science, big data, machine learning, and now generative AI, have changed the entire field of Rapid Diagnostic Testing and its integration into Digital healthcare systems. #REASSURED outlines a pragmatic approach to digital enablement while highlighting the need for easier specimen collection and environmental sustainability. The assaya team delivers diagnostic solutions that build upon the foundational aspects of #ASSURED and recognize the lessons learnt over 20 years and highlighted by the #REASSURED framework. The current #H5N1 outbreak highlights the need for rapid digital enablement of community-based rapid diagnostics not just for humans but also for zoonotic and environmental conditions. Building digital tools and infrastructure to support on-demand and at-scale rapid testing is essential for both infectious and non-infectious diseases for the betterment of everyone. #OneHealth #Diagnostics #POCT #POET #POC #DigitalHealth #RDT #RDR #LFA #GenAI #ML #BigData FIND PATH Digital Square at PATH
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Importance of Point-of-Care Testing (POCT) in Public Healthcare: _I. Improved Patient Outcomes_ 1. _Timely diagnosis_: POCT enables rapid diagnosis, facilitating prompt treatment. 2. _Enhanced patient care_: POCT helps healthcare professionals make informed decisions. 3. _Better disease management_: POCT enables monitoring of chronic conditions. _II. Increased Accessibility_ 1. _Rural and remote areas_: POCT brings diagnostic testing to underserved populations. 2. _Community health centers_: POCT enhances primary care services. 3. _Disaster response_: POCT provides critical diagnostic capabilities in emergency situations. _III. Cost-Effectiveness_ 1. _Reduced laboratory costs_: POCT minimizes the need for centralized laboratory testing. 2. _Decreased hospitalization rates_: POCT enables early intervention, reducing hospitalization needs. 3. _Improved resource allocation_: POCT helps optimize healthcare resource utilization. _IV. Enhanced Public Health Surveillance_ 1. _Infectious disease monitoring_: POCT facilitates rapid detection of infectious diseases. 2. _Epidemiological tracking_: POCT enables real-time monitoring of disease outbreaks. 3. _Data-driven decision-making_: POCT provides valuable insights for public health policy development. _V. Challenges and Future Directions_ 1. _Regulatory frameworks_: Establishing clear guidelines for POCT implementation. 2. _Quality assurance_: Ensuring the accuracy and reliability of POCT devices. 3. _Integration with electronic health records (EHRs)_: Seamlessly incorporating POCT data into EHRs. 4. _Training and education_: Providing healthcare professionals with POCT training and support. By addressing these challenges and leveraging the benefits of POCT, public healthcare systems can improve patient outcomes, increase accessibility, and enhance public health surveillance
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Another great collaboration with some wonderful colleagues Centers for Disease Control and Prevention, National Association of Chronic Disease Directors (NACDD), Commonwealth Informatics Inc, Public Health Informatics Institute, Harvard Pilgrim Health Care Institute. Katherine Hohman you are the best to write papers with! Surveillance modernization efforts emphasize the potential use of electronic health record (EHR) data to inform public health surveillance and prevention. However, EHR data streams vary widely in their completeness, accuracy, and representativeness. “Validation of Multi-State EHR-Based Network for Disease Surveillance (MENDS) Data and Implications for Improving Data Quality and Representativeness,” published in Preventing Chronic Disease (Volume 21 — June 13, 2024), describes the validation process by the MENDS pilot project to identify and resolve data quality issues that could affect chronic disease prevalence estimates. It concludes with recommendations for future validation efforts that are generalizable to other public health surveillance initiatives using EHR data. Coordinated by the National Association of Chronic Disease Directors (NACDD) and funded by Centers for Disease Control and Prevention, MENDS is built on the Electronic Medical Record Support for Public Health (ESP) surveillance platform, an open-source software designed to transform raw EHR data into usable public health information (e.g., incidence of hypertension treatment and control in a target jurisdiction stratified by age, sex, and race-ethnicity). Working with five data-contributing organizations, the MENDS Coordinating Center team identified gaps in EHR databases and in the processes to extract, map, integrate, and analyze data contributors’ EHR data. The most common validation issue was missing data, including lower-than-expected data volume, missing demographic or geographic information, and missing patients. Results from validation activities and observations were shared and discussed with data contributors to learn more about specific issues and to reach consensus about how to resolve them. The lessons learned can be applied to other EHR-based surveillance efforts. Have questions or want to learn more about MENDS? Leave a comment below, or contact NACDD’s MENDS team: [email protected]
Validation of Multi-State EHR-Based Network for Disease Surveillance (MENDS) Data and Implications for Improving Data Quality and Representativeness
cdc.gov
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Another great collaboration with some wonderful colleagues Centers for Disease Control and Prevention, National Association of Chronic Disease Directors (NACDD), Commonwealth Informatics Inc, Public Health Informatics Institute, Harvard Pilgrim Health Care Institute Surveillance modernization efforts emphasize the potential use of electronic health record (EHR) data to inform public health surveillance and prevention. However, EHR data streams vary widely in their completeness, accuracy, and representativeness. “Validation of Multi-State EHR-Based Network for Disease Surveillance (MENDS) Data and Implications for Improving Data Quality and Representativeness,” published in Preventing Chronic Disease (Volume 21 — June 13, 2024), describes the validation process by the MENDS pilot project to identify and resolve data quality issues that could affect chronic disease prevalence estimates. It concludes with recommendations for future validation efforts that are generalizable to other public health surveillance initiatives using EHR data. Coordinated by the National Association of Chronic Disease Directors (NACDD) and funded by Centers for Disease Control and Prevention, MENDS is built on the Electronic Medical Record Support for Public Health (ESP) surveillance platform, an open-source software designed to transform raw EHR data into usable public health information (e.g., incidence of hypertension treatment and control in a target jurisdiction stratified by age, sex, and race-ethnicity). Working with five data-contributing organizations, the MENDS Coordinating Center team identified gaps in EHR databases and in the processes to extract, map, integrate, and analyze data contributors’ EHR data. The most common validation issue was missing data, including lower-than-expected data volume, missing demographic or geographic information, and missing patients. Results from validation activities and observations were shared and discussed with data contributors to learn more about specific issues and to reach consensus about how to resolve them. The lessons learned can be applied to other EHR-based surveillance efforts. Have questions or want to learn more about MENDS? Leave a comment below, or contact NACDD’s MENDS team: [email protected]
Validation of Multi-State EHR-Based Network for Disease Surveillance (MENDS) Data and Implications for Improving Data Quality and Representativeness
cdc.gov
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BIG NEWS! 🎉 Our research on the Global burden of urolithiasis is officially published! This landmark study reveals there are a significant regional variations in the prevalence , death and DALYs of urolithiasis. Learn how our findings can inform policy and improve patient care: #urolithiasis #globalhealth #research #kidneystones#GBD @Mae@Hannah Awoke Misganaw Temesgen Institute for Health Metrics and Evaluation
📢 Research Alert: Global Burden of Urolithiasis (“stones” in the urinary tract) 🌍 🎉 Kudos to Professors Atalel F. Awedew, Dirac and the GBD 2021 Urolithiasis Collaborators for their new study, "The global, regional, and national burden of urolithiasis in 204 countries and territories, 2000-2021: a systematic analysis for the Global Burden of Disease Study 2021," published in EClinicalMedicine. 📚 This analysis examines the incidence, mortality, and disability-adjusted life years (DALYs) associated with urolithiasis across the globe, offering insights into regional trends, demographic disparities, and implications for healthcare systems. 🔑 Key Insights: • Prevalence in 2021: There were 106 M incident cases of urolithiasis, 67% of which occurred in men. • Trends: Between 2000 and 2021, global incident cases increased by 26.7%, while age-standardized incidence rates decreased by 17.5%, reflecting improved preventive measures and healthcare access in some regions. • Mortality: Deaths attributed to urolithiasis rose by 60.3% globally over two decades, despite the age-standardized death rate remaining under 0.5 per 100,000 across regions. • Disability: Urolithiasis accounted for 694,000 DALYs globally in 2021, with a 34.5% increase in DALYs since 2000. Age-standardized DALY rates, however, declined by 15.1% during the same period. • Regional Disparities: Incidence rates were highest in Eastern Europe and lowest in Western Sub-Saharan Africa. Some regions, such as Central America and the Caribbean, experienced increasing trends, while others, like East Asia and high-income North America, saw declines. 🌍 Impact: This study underscores the significant burden of urolithiasis, highlighting the need for sustained global efforts in prevention, public health education, and equitable access to healthcare interventions. It provides essential insights for policymakers and clinicians to address disparities and improve outcomes for affected populations. 👏 Funding: Supported by the Bill & Melinda Gates Foundation. 🔗 Dive deeper into the study here: https://lnkd.in/gg6W2Acn #️⃣ #GlobalHealth #Urolithiasis #PublicHealth #eClinicalMedicine 🗓️ Published online 21 November 2024, this comprehensive analysis offers valuable tools for understanding and mitigating the global burden of urolithiasis.
The global, regional, and national burden of urolithiasis in 204 countries and territories, 2000–2021: a systematic analysis for the Global Burden of Disease Study 2021
thelancet.com
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WISH 2024 Summit Closes with Qatar Becoming First MENA Country to Join Novartis Foundations Cardio4cities Initiative https://lnkd.in/duBTr5Ji HE Director of Public Health Department, Ministry of Public Health, Sheikh Dr. Mohammed bin Hamad Al-Thani explained "cardiovascular disease is the leading cause of death in Qatar. Noncommunicable diseases cost Qatar QR 18.1 billion annually, and CVDs account for 73 percent of that burden. "In many cases, CVDs are preventable, and that’s why we are committed to shifting our focus and approach to prevention, rather than only improving care this is especially important for chronic diseases, as most drivers of these diseases can be addressed outside of the health facilities, in our daily life. "This is exactly why we are eagerly looking forward to implementing CARDIO4Cities in Qatar, and working together with different sectors and stakeholders to improve cardiovascular health in the country." Speaking about the significance of Qatar joining this initiative, Research, Development, and Innovation Adviser to the Chairpersons Office and Executive Director of Research, Development and Innovation at Qatar Foundation (QF), Dr. Hilal Lashuel, said: "Participating in CARDIO4Cities offers Qatar unique opportunities to improve public health and drive innovation. Collaborating with a global network of cities allows us to share knowledge, learn from each other, and be inspired by new solutions developed in different urban settings. "This partnership will help us develop tools to capture, integrate, and analyze data, as well as scalable strategies to improve cardiovascular health at both the population and individual levels." He added that one of the programs key strengths is its tailored, data-driven approach, which adapts interventions to local needs. While fostering global collaboration, CARDIO4Cities ensures local ownership and prioritizes data privacy and security. Held under the theme 'Humanizing Health: Conflict, Equity, and Resilience', the two-day WISH 2024 summit brought together over 3000 delegates, including more than 200 global health leaders and expert speakers to discuss evidence-based ideas and practices in healthcare innovation to address the world’s most urgent global health challenges including the impact of conflict on healthcare, cancer, antimicrobial resistance, mental health and palliative care. (QNA)
WISH 2024 Summit Closes with Qatar Becoming First MENA Country to Join Novartis Foundations Cardio4cities Initiative
qna.org.qa
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📢 Research Alert: Global Burden of Urolithiasis (“stones” in the urinary tract) 🌍 🎉 Kudos to Professors Atalel F. Awedew, Dirac and the GBD 2021 Urolithiasis Collaborators for their new study, "The global, regional, and national burden of urolithiasis in 204 countries and territories, 2000-2021: a systematic analysis for the Global Burden of Disease Study 2021," published in EClinicalMedicine. 📚 This analysis examines the incidence, mortality, and disability-adjusted life years (DALYs) associated with urolithiasis across the globe, offering insights into regional trends, demographic disparities, and implications for healthcare systems. 🔑 Key Insights: • Prevalence in 2021: There were 106 M incident cases of urolithiasis, 67% of which occurred in men. • Trends: Between 2000 and 2021, global incident cases increased by 26.7%, while age-standardized incidence rates decreased by 17.5%, reflecting improved preventive measures and healthcare access in some regions. • Mortality: Deaths attributed to urolithiasis rose by 60.3% globally over two decades, despite the age-standardized death rate remaining under 0.5 per 100,000 across regions. • Disability: Urolithiasis accounted for 694,000 DALYs globally in 2021, with a 34.5% increase in DALYs since 2000. Age-standardized DALY rates, however, declined by 15.1% during the same period. • Regional Disparities: Incidence rates were highest in Eastern Europe and lowest in Western Sub-Saharan Africa. Some regions, such as Central America and the Caribbean, experienced increasing trends, while others, like East Asia and high-income North America, saw declines. 🌍 Impact: This study underscores the significant burden of urolithiasis, highlighting the need for sustained global efforts in prevention, public health education, and equitable access to healthcare interventions. It provides essential insights for policymakers and clinicians to address disparities and improve outcomes for affected populations. 👏 Funding: Supported by the Bill & Melinda Gates Foundation. 🔗 Dive deeper into the study here: https://lnkd.in/gg6W2Acn #️⃣ #GlobalHealth #Urolithiasis #PublicHealth #eClinicalMedicine 🗓️ Published online 21 November 2024, this comprehensive analysis offers valuable tools for understanding and mitigating the global burden of urolithiasis.
The global, regional, and national burden of urolithiasis in 204 countries and territories, 2000–2021: a systematic analysis for the Global Burden of Disease Study 2021
thelancet.com
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