Importance of Health Data in Policy Making

‎Imagine being 15 years old and already knowing the layout of a hospital better than your school. ‎ ‎For many young people living with 𝗦𝗶𝗰𝗸𝗹𝗲 𝗖𝗲𝗹𝗹 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 (𝗦𝗖𝗗), this isn’t imagination: it’s reality. ‎ ‎Every crisis feels like a battle against pain, every hospital visit a test of resilience. Yet behind every data point is a child, a family, and a care team doing their best to turn pain into progress. ‎ ‎As someone passionate about using data for better health outcomes, I wanted to understand this journey, not just in numbers, but to tell their story through data. ‎ ‎So I built a 𝗦𝗶𝗰𝗸𝗹𝗲 𝗖𝗲𝗹𝗹 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗖𝗹𝗶𝗻𝗶𝗰 𝗘𝗻𝗰𝗼𝘂𝗻𝘁𝗲𝗿𝘀 𝗗𝗮𝘀𝗵𝗯𝗼𝗮𝗿𝗱, designed to help providers, researchers, and policymakers see the story behind every data point. ‎ ‎ ‎𝗪𝗵𝗮𝘁 𝗪𝗲 𝗔𝗹𝗿𝗲𝗮𝗱𝘆 𝗞𝗻𝗼𝘄 𝗔𝗯𝗼𝘂𝘁 𝗦𝗖𝗗: ‎ ‎• It’s a genetic disorder that distorts red blood cells, leading to blockages, pain, and recurrent crises. ‎• Most patients are diagnosed in early childhood, requiring lifelong management. ‎• The disease burden is highest in sub-Saharan Africa, where early detection and consistent care are still limited. ‎• Yet, evidence shows early diagnosis and outpatient management significantly improve survival and quality of life. ‎ ‎ ‎𝗞𝗲𝘆 𝗜𝗻𝘀𝗶𝗴𝗵𝘁𝘀: ‎ ‎☑️ 65% pediatric, average age 15, showing consistent clinic engagement. ‎☑️ 80% have experienced crises, with lowest hemoglobin in children under 10. ‎☑️ Outpatient care delivers better hemoglobin and oxygen outcomes, while ER visits record the highest pain levels. ‎☑️ 49% improved hemoglobin and 97% clinical stability despite 51% repeat admissions. ‎ ‎The dashboards I built turn those numbers into a narrative: 𝘸𝘩𝘰 𝘵𝘩𝘦 𝘱𝘢𝘵𝘪𝘦𝘯𝘵𝘴 𝘢𝘳𝘦, 𝘩𝘰𝘸 𝘵𝘩𝘦𝘪𝘳 𝘤𝘰𝘯𝘥𝘪𝘵𝘪𝘰𝘯𝘴 𝘦𝘷𝘰𝘭𝘷𝘦, 𝘸𝘩𝘦𝘳𝘦 𝘤𝘢𝘳𝘦 𝘪𝘴 𝘮𝘰𝘴𝘵 𝘦𝘧𝘧𝘦𝘤𝘵𝘪𝘷𝘦, 𝘢𝘯𝘥 𝘸𝘩𝘦𝘵𝘩𝘦𝘳 𝘰𝘶𝘳 𝘪𝘯𝘵𝘦𝘳𝘷𝘦𝘯𝘵𝘪𝘰𝘯𝘴 𝘢𝘳𝘦 𝘵𝘳𝘶𝘭𝘺 𝘤𝘩𝘢𝘯𝘨𝘪𝘯𝘨 𝘰𝘶𝘵𝘤𝘰𝘮𝘦𝘴 𝘰𝘷𝘦𝘳 𝘵𝘪𝘮𝘦. ‎ ‎ ‎𝗥𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗮𝘁𝗶𝗼𝗻𝘀 𝗳𝗼𝗿 𝗦𝘁𝗮𝗸𝗲𝗵𝗼𝗹𝗱𝗲𝗿𝘀: ‎ ‎✅ 𝗛𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲 𝗔𝗱𝗺𝗶𝗻𝗶𝘀𝘁𝗿𝗮𝘁𝗼𝗿𝘀: Strengthen outpatient and community-based programs to reduce emergency visits and enhance patient stability. ‎✅ 𝗖𝗹𝗶𝗻𝗶𝗰𝗶𝗮𝗻𝘀: Prioritize early interventions for children under 10 ‎✅ 𝗣𝘂𝗯𝗹𝗶𝗰 𝗛𝗲𝗮𝗹𝘁𝗵 𝗟𝗲𝗮𝗱𝗲𝗿𝘀: Expand carrier screening, premarital testing, and genetic counseling to prevent new SCD births. ‎✅ 𝗣𝗼𝗹𝗶𝗰𝘆𝗺𝗮𝗸𝗲𝗿𝘀 & 𝗗𝗼𝗻𝗼𝗿𝘀: Invest in data systems and sustainable telehealth models ‎ ‎ ‎Every data point is more than a metric: it’s someone’s child, someone’s hope, someone’s fight to live well. ‎ ‎And if we keep listening to what the data tells us, we can build a future where fewer children are born with SCD: and those who are, live stronger, longer, and freer. ‎ ‎#Healthcare #SickleCellAwareness #PublicHealth #HealthcareAnalytics #HealthTech #SickleCell #PublicHealth #GeneticCounseling #Datafam #Excel

(HiAP) Health in All Policies: Explained & Why Every Government Needs It 🌍 ⁉️ Every decision a government makes affects public health from transport to housing, education, or corporate regulation That’s where Health in All Policies (HiAP) comes in: a strategy to embed and attach health considerations into every sector of government not just health ministries. 🔹 What is HiAP? HiAP is a policy approach where all government decisions are assessed for their health and equity impact. Because health is shaped by far more than hospitals: → Safe roads reduce injuries → Clean air and water prevent disease → Quality education improves lifelong wellbeing → Affordable housing supports physical and mental health Without HiAP, policies can unintentionally harm health. With HiAP, they actively improve it. 🌍 Who’s Doing It? Several countries have embedded HiAP through formal governance structures: • 🇫🇮 Finland • 🇸🇦 Saudi Arabia • 🇦🇺 Australia • 🇰🇷 South Korea They bring together transport, education, urban planning, finance, and health at the same table. Health should influence every department not just the Ministry of Health. 🔹 Why Do Governments Need HiAP? Almost every sector shapes health outcomes. Here's how: Transport ↳ Safer roads and speed limits reduce injuries ↳ Efficient Public transport lowers pollution and disease risk ↳ Walkable cities boost physical and mental health Education ↳ Healthy meals and physical activity support development ↳ Health education empowers better decisions ↳ Safe schools reduce injury and absenteeism Housing & Urban Planning ↳ Better ventilation and sanitation reduce infections ↳ Green spaces support mental wellbeing ↳ Affordable housing improves health equity Workplaces & Corporate Policies ↳ Safe working conditions reduce illness ↳ Mental health support boosts productivity ↳ Wellness programs lower absenteeism 🔹 Key Strategies That Make HiAP Work → Health Impact Assessments before policies are approved → Cross-sector collaboration between ministries → Public engagement in policymaking → Evidence-based decisions supported by data and research teams → Accountability mechanisms to track health outcomes 🔹 The Economic & Social Payoff • Lower healthcare costs through prevention • Higher productivity and fewer sick days • Reduced inequalities between communities • Improved quality of life • More efficient, coordinated governance Example: Countries that invest in early childhood education, school meals, and safe playgrounds see healthier children, better academic performance, and a more productive workforce. Bottom Line Health is everyone’s business. If we want healthier nations, we must design healthier policies. #HiAP #PublicHealth #Policy #HealthSystems #Epidemiology #QualityOfLife

🤯 This week, I had a conversation that was both eye-opening and deeply concerning. A real-world data (RWD) strategist who works with public sector agencies shared that many contracts for Social Determinants of Health (SDOH) data are being canceled—not because the data lacks value, but because "SDOH" has become a politically sensitive term. As a result, agencies can no longer procure data for this purpose, despite its critical role in understanding healthcare disparities. At a time when health inequities are worsening—with disparities in access, outcomes, and representation growing—the idea of restricting the very data that helps us monitor and address these gaps is deeply troubling. Over the years, DEI-driven healthcare research has played a crucial role in uncovering systemic issues, such as: 📌 Gender disparities in clinical research and pain management, often leaving women underdiagnosed and undertreated. 📌 Racial and ethnic disparities in access to care, preventive screenings, and chronic disease management. 📌 Rural healthcare gaps, where communities face provider shortages and higher mortality rates due to limited access. These insights have driven policy changes, funding decisions, and industry-wide initiatives aimed at making healthcare research and delivery more inclusive. Yet now, we’re witnessing a sudden and dramatic shift away from these priorities, as the language of health equity becomes politicized. If we stop collecting and analyzing health equity data, aren't we simply choosing not to see the problem? Would love to hear from you if you've seen these sudden shifts impact your own area of healthcare research! #HealthEquity #SDOH #HealthcareData #DEI #HealthPolicy

I was saddened to see that among the recent federal firings, the team at the CDC’s National Health and Nutrition Examination Survey (NHANES) has also been laid off. For those who may not know, NHANES has collected data on eating patterns, diabetes, and other common diseases for decades. The team that plans and disseminates this vital health and nutrition research, used to inform public health policy, is now gone. It’s often considered the “gold standard” of health surveys. Many may not be aware of the crucial service that NHANES provides, but it has had a wide-ranging impact on health policy—from removing lead from gas and paint, to adding nutrition labels to food packaging. I hope you’ll take a moment to read about this committed group of public servants and understand what their termination means for our country’s public health. https://lnkd.in/e8hNXifW

The understanding of real-world evidence has gained traction in recent years, with an increasing number of possible uses, from healthcare product development and approval to the final clinical decision and guidance of public policies. The advantages of RWE use, when utilized in a balanced manner, overcome the challenges and, therefore, can offer a time- and cost-saving solution for researchers, the healthcare industry, regulatory agencies, policymakers, and payers towards the patient benefit. Future research should explore strategies to integrate diverse #RWD sources to build robust databases that enhance utility and generalizability for stakeholders. Promising methodologies, such as artificial intelligence-powered approaches to ensure validity, hybrid research designs, and large-scale longitudinal and multicenter RWD cohorts, could significantly contribute to the development and credibility of this type of evidence. #realworlddata #realworldevidence #regulatory #clinicalresearch #regulatoryprocess #evidencebasedmedicine #patientoutcomes #rwe #realworldoutcomes #healthoutcomes #patientcentricity #heor #healtheconomics #regulatoryaffairs #clinicaldevelopment #clinicaltrials #rct #healthpolicy #datascience #dataanalytics #dataquality #researchmethodology #marketaccess #patientaccess #publichealth #epidemiology #ai #nlp International Society for Pharmacoepidemiology