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Mining Millions of Medical Records to Revolutionize Personalized Care

New York University’s Langone Health System has assembled a vast digital library of clinical information from roughly two million patients seen since 2010. Called the Precision Medicine Registry, this database captures details from routine doctor visits, hospital stays, lab tests, and imaging studies. Researchers are using these everyday records to spot disease risks earlier, verify which screening tools actually work, and ensure doctors follow the latest treatment guidelines. The initiative also combines genetic information with medical histories, allowing scientists to study how DNA influences health outcomes across diverse populations. By applying artificial intelligence and machine learning to these anonymized records, teams can identify patterns invisible to the human eye. The goal is to move beyond standardized medicine, using insights from past patients to predict complications and tailor prevention strategies for future ones.

Integrated electronic health record databases provide an unprecedented opportunity to enhance knowledge of disease prediction, prevention, a

#Electro

What Is FHIR? The Standard Helping Your Doctors Share Data

Health care systems have long struggled to share information, forcing patients to repeat tests or carry paper records between offices. A technical standard called FHIR (pronounced "fire") aims to fix this by creating a universal format for electronic records. Think of it as a common language that lets different computer systems exchange medication lists, lab results, and allergies. However, adopting FHIR does not mean all your history becomes instantly available. Some hospitals use it only for recent visits, while older records may stay in separate systems. There is also a related system called SMART on FHIR. While FHIR structures the data, SMART on FHIR manages security permissions, letting patients safely authorize specific apps to pull information from their charts. Support varies by provider, so automatic sharing is not yet universal.

Understand FHIR health data interoperability, what SMART on FHIR means for patients, where adoption stands, and why record sharing still fee

#FHIR #Health Data Exchange #SMART on FHIR #Electronic Health Records #Medical Data Standards

AI Reads Medical Histories to Predict Lifetime Disease Risk

Researchers are using the same kind of artificial intelligence that powers ChatGPT to read medical histories and predict how diseases unfold over a lifetime. Instead of generating text, the system analyzes sequences of diagnoses and treatments to forecast risks for over one thousand conditions. Developed by Tom Fitzgerald at the European Bioinformatics Institute, the model was trained on records from hundreds of thousands of people across different countries. Because the system is generative, it can simulate plausible future health scenarios, creating a virtual laboratory for studying disease burden without exposing real patient data. Explainable techniques reveal hidden patterns, such as how early illnesses influence later risks and where data biases might skew predictions. The work offers new tools for precision medicine and population health by modeling the complex, long-term interactions between multiple diseases.

Monthly meeting of the Generative AI Collaborative Learning Club.

#Generative AI #Healthcare Data #Disease Prediction #Precision Medicine #Population Health

Your Neighborhood Could Predict Your Blood Pressure Risk

Researchers have developed a new method to predict who might develop high blood pressure by analyzing the specific environmental conditions where people live. The technique combines artificial intelligence with detailed geographic data, including air pollution levels, noise exposure, and access to parks or green spaces. The study found that breathing polluted air, specifically fine particulate matter and nitrogen dioxide, significantly raises hypertension risk, particularly for residents of lower-income neighborhoods. Living near green spaces appeared to protect against developing high blood pressure. Traditional risk assessments rely mostly on age, genetics, and lifestyle factors while overlooking environmental influences. This new approach creates personalized risk profiles based on precise home locations and local environmental exposures. By accounting for factors like urban heat islands and traffic noise, doctors could eventually identify high-risk patients earlier and recommend targeted interventions such as air purifiers or green space access. The research points toward a future where healthcare considers not just your body, but the air you breathe and the street you live on.

In a groundbreaking advancement that fuses geospatial analysis, environmental science, and machine learning, a team of researchers has unvei

#Hypertension #Machine learning #Environmental health #Geospatial analysis #Urban health

How to Read Your Lab Results Without Unnecessary Worry

Getting bloodwork back can be nerve-wracking, especially when you see High or Low flags next to your numbers. But those flags do not automatically signal disease. Results often fall outside standard ranges due to normal biological variation, hydration levels, medications, or simply because different laboratories use different equipment and population standards to define what is normal. To make sense of your reports, compare your value only against the reference range printed on that specific document, since ranges vary between facilities. When reviewing results with your doctor, ask how the numbers relate to your specific symptoms, how they compare to your previous tests, and whether any prescriptions or supplements might be skewing the data. Keep all your reports in one place with dates clearly visible, and track trends rather than fixating on single numbers. Understanding these nuances helps you have better conversations with your healthcare provider and avoid unnecessary anxiety about harmless fluctuations.

Learn how to read a lab results report, understand medical results, compare reference ranges, and track lab results over time with clearer q

#Lab results #Blood tests #Health literacy #Medical advice #Patient empowerment

Big Tech's AI Health Tools Are Locking Out Millions With Disabilities

Big tech companies are racing to turn artificial intelligence into the front door for healthcare. Amazon, Microsoft, and others have launched AI assistants that handle everything from booking appointments to diagnosing symptoms, fielding tens of millions of questions daily. But for the more than 70 million American adults living with disabilities, these tools often arrive as locked doors rather than open ones. When AI health assistants cannot work with screen readers for blind users, voice commands for those with limited mobility, or keyboard navigation for people who cannot use a mouse, they create a new kind of medical inequality. The issue is not deliberate exclusion but a failure to treat accessibility as a core design requirement. With healthcare already ranking among the least accessible digital spaces online, adding AI layers without fixing these gaps risks leaving nearly one in three adults struggling to reach their doctors.

AI genuinely could reduce barriers, by making health information more conversational, more personalized, and easier to act on. But that only

#AI healthcare #digital accessibility #health equity #assistive technology #disability rights

Families Search for Answers in Ancestors' Sealed Mental Health Records

For over 20 years, Breta Meria Conole lived in a New York state psychiatric hospital. When her great grandniece sought those records to understand her daughter's depression, the state refused twice. A federal privacy law called HIPAA locks away medical records for 50 years after death, blocking families from learning about inherited risks for conditions like bipolar disorder or suicide. While Massachusetts and Washington have loosened access rules, many states still refuse requests for historical asylum documents. These files often contain detailed clinical notes that could explain mysterious family deaths or patterns of mental illness. For descendants of patients buried in unmarked graves, unlocking these archives could reveal genetic vulnerabilities that help protect living relatives.

#Mental Health Records #Medical Privacy #Family History #State Hospitals #Genetic Health

Newfoundland Doctors Warn Health App Delivers Tragic News Without Support

Imagine learning you have lost a pregnancy or been diagnosed with cancer alone at midnight, staring at your phone. This is the reality facing some patients in Newfoundland and Labrador since the launch of MyChart, a new app that instantly releases medical test results. Physicians warn that the portal is delivering catastrophic news before doctors even see the reports, leaving patients to process tragedy without professional support or context. The Newfoundland and Labrador Medical Association says the system forces doctors to spend evenings frantically reviewing files to beat patients to the results. They are calling for a mandatory 24 to 48 hour delay, allowing physicians to review findings first and deliver difficult news in person with compassion. Health authority leaders admit they have heard similar stories but insist the app remains voluntary and that the benefits of immediate access outweigh the emotional risks.

Physicians are calling for a change to prevent patients from receiving tragic medical news alone, without compassionate support from a healt

#Digital Health #Patient Care #Medical Ethics #Newfoundland and Labrador #Healthcare Technology

How to Organize Family Medical Records and Keep Them Current

Keeping track of who takes which medication or which doctor treats what condition becomes nearly impossible during emergencies without proper documentation. Medical experts recommend creating separate health files for every family member rather than combining them into one folder. This separation prevents dangerous mix-ups between medications and ensures the right information reaches the right doctor quickly. Each personal file should start with the basics: current medications, known allergies, vaccination history, ongoing health conditions, emergency contacts, and care plans. Add provider and insurance details plus recent test results. Include any documents you repeatedly bring to appointments. For elderly parents, maintain a dedicated profile beginning with their current prescriptions and allergy information, then add visit notes and specialist contacts. Check these records every three months as a routine, but update them immediately after any hospital stay, new diagnosis, prescription change, vaccination, or insurance update. Having accurate, accessible records ready can streamline emergency room visits and routine checkups alike, reducing stress when health issues arise.

Learn how to organize family health records for children, parents, and caregivers with a practical system for documents, medications, appoin

#family medical records #health information management #emergency preparedness #aging parents #healthcare organization

23andMe Links Your DNA to Medical Records for Personalized Health Insights

23andMe is testing a new service that merges your genetic code with your actual medical history to create a complete picture of your health. Through a partnership with HealthEx, the genetics company can now pull in lab results, diagnoses, and other records from doctors and combine them with DNA data already on file. The result, called Health Summary, uses artificial intelligence to spot patterns across these different data sources and suggest specific health priorities tailored to each user. Unlike previous methods that required manually uploading files, this integration uses a national health data network called TEFCA to automate the process securely. Privacy controls allow users to disconnect or delete their records at any time, and the system requires explicit permission before accessing any information. For the 30,000 customers currently in the beta program, the service aims to move beyond static genetic risk reports to provide real-time health guidance based on current conditions and genetic predispositions.

23andMe Partners with HealthEx to Connect Medical Records with Your DNA for the Future of Personalized Medicine

#Personalized Medicine #Genetic Testing #AI Health Tools #Medical Records #Data Privacy

When Should Kids Take Charge of Their Medical History?

Most adults struggle to recall their medications or allergies in a crisis, so experts recommend starting health education early. Even preschoolers can learn basics like their doctor’s name and any allergies. As children mature, parents can gradually hand over responsibility for tracking appointments and medications, building skills for adult healthcare. Teenage years bring new questions about privacy. Rather than sudden secrecy, families should have ongoing conversations about which health details stay private and which are shared, preparing teens to manage their own care. Every household needs an emergency health cheat sheet listing current medications, major conditions, and contacts, plus a designated spot for medical paperwork. After each doctor visit, caregivers should complete a simple handoff: file new documents, verify medication changes, update the emergency summary, and brief the next person in charge. This approach prevents critical details from slipping through the cracks during busy care transitions.

Learn how to teach family health record management with age-appropriate habits, caregiver handoffs, privacy boundaries, and simple update ro

#health literacy #pediatric care #medical privacy #family health #caregiving

Parents Sue OpenAI After ChatGPT Advice Linked to Son's Fatal Overdose

The parents of a teenager who died from an accidental drug overdose are suing OpenAI, alleging that ChatGPT provided lethal medical advice. Samuel Nelson died in May 2025 after the AI allegedly coached him to mix the herbal supplement kratom with the anxiety medication Xanax, and suggested a deadly dosage. According to the lawsuit filed in San Francisco, the bot failed to warn about dangerous interactions or urge him to seek help as he showed signs of dying. The family claims ChatGPT prioritized keeping users engaged over safety, acting like a medical authority without proper training or safeguards. The suit demands OpenAI halt its health product until independent testing proves it safe, and accuses CEO Sam Altman of bypassing safety protocols to rush the product to market.

Clinic students and partner organizations have filed a lawsuit claiming that OpenAI removed safety standards from ChatGPT.

#OpenAI #ChatGPT #Lawsuit #AI Safety #Medical Advice

Unlock Your Medical Records: A Patient's Guide to Rights and Privacy

Patient guides explain how to take charge of personal health information in an increasingly digital medical system. The resources cover fundamental rights to access medical records from healthcare providers, strategies for organizing family health histories, and the advantages of switching to digital formats. They also clarify HIPAA, the federal law that protects health privacy by controlling who can access your medical information. With easy instructions for requesting records and safeguarding sensitive data, the guidance aims to help patients navigate modern healthcare while keeping their personal information secure.

Read patient-friendly guidance on health data privacy, medical records, HIPAA basics, and personal health record organization from KeepMD.

#Medical Records #Patient Rights #HIPAA #Health Privacy #Digital Health

Thinking About a Clinical Trial? Read the Fine Print First

Clinical trials promise cutting-edge treatments and closer medical care, but signing up is not like clicking agree on a phone app. These studies test whether new drugs, devices, or therapies actually work and are safe, moving medicine from theory to practice. Before enrolling, volunteers should understand exactly what they are committing to. Every trial follows a strict protocol, essentially a rulebook that details who qualifies, what procedures are involved, how long it takes, and how researchers measure success. Trials also move through distinct phases. Phase 1 focuses on basic safety and dosage with small groups of about 20 to 80 people, checking for side effects before wider testing begins. The decision deserves careful thought, not a rushed signature in a hallway. Participants need to ask uncomfortable questions, review documents thoroughly, and recognize that their body, time, and health are truly on the line. While volunteers drive medical progress, informed consent protects individual wellbeing.

Considering a clinical trial? Here’s how eligibility, consent, risk, cost and time commitment really work.

#Clinical trials #Medical research #Patient safety #Informed consent #Healthcare

HIPAA Protects Doctor Visits, But Leaves Many Health Apps Uncovered

Federal privacy rules known as HIPAA safeguard sensitive medical information, but their reach is more limited than many patients realize. The law binds traditional healthcare providers, insurance plans, and outside contractors that handle health data to strict confidentiality standards. Yet many consumer health apps operate outside HIPAA's reach, which is why users should scrutinize privacy policies before sharing personal details. The law does guarantee patients the right to inspect and obtain copies of their medical records from covered providers, though certain exceptions exist. As health tracking moves increasingly to smartphones, understanding where federal protections end helps consumers make informed decisions about their most sensitive information.

Learn what HIPAA is, what it covers, where patients get confused, and how HIPAA affects your privacy and access rights in real healthcare se

#HIPAA #Medical Privacy #Health Apps #Patient Rights #Data Security

Palantir Gains Unlimited Access to NHS Patient Health Records

NHS England has granted Palantir, a US data analytics company, unlimited access to patient health records as part of a national digitisation scheme. The firm, which already supplies software to UK police forces, the Ministry of Defence, and local councils, uses technology that aggregates vast amounts of information to identify patterns. The deal has sparked protests over privacy risks and ethical concerns regarding Palantir's relationship with the Israeli military, which uses its technology to identify targets. Critics worry that giving a private contractor such broad access to sensitive medical information sets a concerning precedent for data protection in the UK's public health system.

This article appeared as part of the Daily Sensemaker newsletter – one story a day to make sense of the world. To receive it in your inbox,

#NHS #Palantir #Patient Data #Privacy #Heal

Over 40% of Patients Would Swap Doctors for Online Medical Records

A new survey reveals that 41 percent of U.S. consumers would change physicians just to get online access to their electronic medical records. The Accenture study highlights a growing divide between patient expectations and doctor practices. While 84 percent of patients believe they should see their complete digital records, only 36 percent of doctors agree. Most physicians prefer limiting access, and currently only about a third of patients enjoy full online access to their health information. Yet patients are not waiting around. More than half now track their own health data, from blood pressure to exercise habits. The findings signal a shift in healthcare, where consumers increasingly expect the same transparency with medical records that they get with banking or shopping records.

More than Forty Percent of U.S. Consumers Willing to Switch Physicians to Gain Online Access to Electronic Medical Records, According to Acc

#Electronic Medical Records #Patient Access #Healthcare Technology #Digital Health #Consumer Rights

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