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HIMSS Patient Matching Testing Event Synthetic Patients and Their Usage at MiHIN Jeff Eastman, Ph.D. Michigan Health Information Networks Shared Services Where Do We Use Real Health Information? • Clinicians who are treating their patients need real information • Every patient’s health information should be quickly retrievable by anyone authorized to be involved in that patient’s care (especially if the patient is unconscious or unable to do so themselves) • Researchers who are attempting to “discover” something new need real information but they keep it “behind closed doors” to prevent unauthorized disclosure • Systems that integrate electronic medical record systems so that health information can be quickly shared through interoperable statewide and national networks need real information • But not the people who develop them or operate them Copyright 2014,2015 MiHIN Shared Services. MiHIN Why Use Synthetic Health Information? • • • • Some types of data that we share statewide involve millions of “messages” per week just in Michigan • Significant risk of unintentional disclosure of real health information Testing system interoperability with real health data is high risk due to possible disclosure of information protected by federal laws on privacy • Especially for information about behavioral health, certain diseases, or substance use • Real health data cannot easily be fully “de-identified” • Good, realistic test data is practically never available in healthcare today Major risk is wrong people seeing someone’s protected health information • Software developers, systems integrators & testers need to view test data to do their jobs • Test data could be sent to the wrong recipient(s) in high volumes Risks are much higher during development and testing than any other time • Dozens of new use cases are waiting to be developed and tested Copyright 2014,2015 MiHIN Shared Services. MiHIN How Shared Services support Statewide Transitions of Care Alerts & Notification Data Sharing Organization Data Sharing Organization Delivery Preference Lookup Specialist Primary Care Patient to Provider Attribution Patient Care Coordinator 1) Patient goes to hospital, hospital sends message to DSO / MiHIN 2) MiHIN checks patient attribution lists and identifies three providers 3) MiHIN retrieves contact and delivery preference for each provider 4) Notifications are routed to providers based on contact info and preferences Copyright 2015 Michigan Health Information Network Shared Services 4 Empowers Clinical Alerts: Medication Reconciliation Animation MR Data Sharing Organization (DSO) Data Sharing Organization (DSO) Health Provider Directory Care Coordinator Primary Care Patient to Provider Attribution Specialist 1) Patient discharged, hospital sends message to DSO / MiHIN 2) MiHIN checks patient-provider attribution and identifies providers 3) MiHIN retrieves contact and delivery preference for each provider from HPD 4) Medication reconciliation routed to providers based on contact info, preferences Copyright 2015 Michigan Health Information Network Shared Services 5 MiHIN Transitions of Care Service (TOC) • MiHIN TOC service has been in production since Nov 2013 • 59 Physician Organizations in production • 2563 hospital & practice organizations in production • 7925 providers affiliations receiving real-time TOC notifications • Over 4 million TOC notifications transmitted per week • 85% of Michigan statewide admissions are shared currently • 90% of Michigan statewide admissions expected to be shared by the end of 2015 • Onboarding more hospitals and practices weekly • Excellent source of provider, organization and affiliation data • Processing monthly updates to ACRS data sets in production • Working towards transactional updates Copyright 2015 Michigan Health Information Network Shared Services 6 How is this accomplished today? National Plan & Provider Enumeration Service Providers, Hospitals, Data Sharing Organizations Health Provider Search Service Statewide Provider Directory Individual NPIs Organizational NPIs Multiple Affiliations Specialties Provider Index MCIR Immunizations LARA Licensing 21st century contact info: Direct addresses HIE routing & delivery preferences State of Michigan 20th century contact info: Address, phone, fax MDCH Data Hub HSTR Meaningful Use Other MiHIN Services Active Care Relationship Service CHAMPS/MMIS Medicaid (Patient-Provider Attributions) Other Repositories Copyright 2015 Michigan Health Information Network Shared Services 7 What is coming next? National Plan & Provider Enumeration Service Providers, Hospitals, Data Sharing Organizations Provider Index Statewide Consumer Directory MCIR Immunizations LARA Licensing Active Care Relationship Service State of Michigan MDCH Data Hub Health Provider Search Service HSTR Meaningful Use Other MiHIN Services Statewide Provider Directory CHAMPS/MMIS Medicaid Medicaid Member Portal Copyright 2015 Michigan Health Information Network Shared Services 8 PatientGen – The Goal… • Advance ability to automatically create large quantities of realistic health data that is not protected or private • Accelerate efforts to deploy interoperable healthcare systems using realistic data for development, testing, and successful deployment of data sharing “use cases” • Provide general purpose ability to create a wide variety of “safe” test data for use cases ranging from: • Public health reporting (e.g. immunizations, syndromics, reportable labs, cancer/birth defect/death notifications) • Transitions of care (admission-discharge-transfers, medication reconciliations) • Clinical quality measures (CQMs) • Accelerate the transformation from volume-based to qualitybased healthcare delivery and payment. Copyright 2014,2015 MiHIN Shared Services. MiHIN MiHIN Patient Generator: Works Kind of Like a Music Synthesizer • • • • Ability to adjust settings to vary patient populations and outcomes: • Population demographics (age, gender, race, religion) • Population names, addresses & contact information • Synthetic medical systems (providers, practices, hospitals, specialty organizations) • Population risk factors (smoking, alcohol, diet, exercise, …) • Population body signs (BP, Lipids , BMI, Pregnancy, …) • Morbidity models (diabetes, heart disease, pregnancy, STDs, …) Can save/share/adjust reusable “patient population” decks • Urban low income (high childhood obesity), rural, tribal nation, retired/geriatric Simulation generates many useful kinds of healthcare data All healthcare data is synthesized, so no PHI Copyright 2014 Michigan Health Information Network 10 Real Patients Have Body Systems • • Systems & Organs get sick • Sometimes they get well on their own • Sometimes they don’t, that’s why we have doctors Doctors evaluate health, treat sickness • History and exam (symptoms, signs) • Testing • Diagnosis • Prevention, treatment • lifestyle • Rx • procedures • Thousands of real diagnoses • Complicated dependencies • Incomplete understanding • Way too much to simulate in detail Copyright 2014,2015 MiHIN Shared Services. MiHIN SimPatients Have Simulated Body Systems • • • • • • • • • • • • • Cardiovascular Digestive Endocrine Genitourinary Immune Integumentary Lymphatic Mental Muscular Nervous Reproductive Respiratory Skeletal Copyright 2014,2015 MiHIN Shared Services. MiHIN Body Systems Model Real Health States • • • Behavior • ADHD • Autism Nervous • Hemorrhagic Stroke • Ischemic Stroke • Diabetic Retinopathy • Macular Edema • Proliferative Retinopathy • Peripheral Neuropathy • Blindness Genitourinary • STDs • Microalbuminuria • Gross Proteinuria • End Stage Renal Disease • • • Skeletal • Lower Extremity Amputation Cardiovascular • Venous Thromboembolism • Coronary Heart Disease • Murmur • Myocardial Infarction • Atrial Fibrillation • Lateral Ventricular Hypertrophy Reproductive • Eclampsia • Abruptio Placentae • Spontaneous Abortion • Gestational Diabetes • Puerperium Complications And any eCQM Diagnosis Copyright 2014,2015 MiHIN Shared Services. MiHIN Qualitative Health States Help Normalize Results Well Ill Dead As With Likert Scales Intensive Sick Critical Copyright 2014 MiHIN Shared Services. MiHIN PatientGen Creates Thousands of SimPatients • • • Highly Configurable: • Patients: Name, address, gender, age, race, religion, telecom, PCP, practice, specialists & specialty organizations • Providers: Name, address, gender, age, race, religion, telecom, NUCC specialty • Practices: Name, address, telecom, NUCC specialty • Hospitals: Same as practices plus staff specialists • Specialty Organizations: Same as practices • Patient Risk Factors: Diet, exercise, alcohol, smoking, drug use, promiscuity Monte Carlo simulation • Patients age, have children, get sick, get treated, get better, but ultimately die • Lots of realistic healthcare data is generated in the process • More data formats are in the works Any similarity to real individuals or organizations is purely coincidental and is a product of random processes Copyright 2014,2015 MiHIN Shared Services. MiHIN The Challenge: Improve “Clinical Relevance” Reflect real-world patient populations and care delivery practices Adhere to real-world clinical possibility constraints Logic Relevance Simulated Patient Scenarios Must: Contain measure-related data and events Copyright 2014,2015 MiHIN Shared Services. MiHIN The Original Generator Had Some Deficiencies Simulated Patient Scenarios: Adhere to real-world clinical possibility constraint s Logic Relevance Reflect real-world patient populations and care delivery practices Contain measure-related data and events Random generation yielded very random encounters Copyright 2014,2015 MiHIN Shared Services. MiHIN Clinical Possibility Constraints Key Elements Description Sequence Episodes of care have a beginning and an end. Events occur in a specific order (e.g. patient experiences chest pain, before diagnosed of heart attack, before angioplasty is performed). Activities span typical lengths of time which can be represented as a minimum and maximum, or average duration (e.g. an angioplasty procedure takes 60-90 min). Activities may be constrained to a specific role, via regulation or policy (e.g. diagnoses are made by physicians, advanced practice nurses, or physician assistants). Duration Role-Activity Association Range Mutual Exclusivity Likelihood of Occurrence Metadata Activities and events can be associated with rules or parameters (e.g. drugs have associated dosage ranges, etc.). An event may not be permitted or plausible within the presence of another event. Events are associated with an expected frequency (e.g. infants born full term have a high chance of survival, patients admitted for a traumatic injury are unlikely to be admitted against their will, etc.) Activities or events may produce, or may require specific information as metadata (e.g. patients have an associated age, gender & race). Copyright 2014,2015 MiHIN Shared Services. MiHIN Confidential – Simulation Goals & Clinical Relevance Possible Simulation Goals: Represent a Represent a full episode of care patient’s lifetime Test Software Simulation produces only data elements required for quality measurement Simulation produces a full record for an episode of care Simulation produces a full longitudinal record Clinical relevance is limited to clinical quality measure data Clinical relevance is applicable to many more aspects of care (e.g. what happened before and after the PCI at 90 minutes) Clinical relevance is expanded even further, to cover a patient’s lifetime (e.g. natural disease clusters) Original Model New Model Copyright 2014,2015 MiHIN Shared Services. MiHIN SimPatients Have Configurable Demographics • • • • • • • • Names Address distributions Gender distributions Age distributions Race distributions Religion distributions Body Sign distributions Risk Factor distributions Copyright 2014,2015 MiHIN Shared Services. MiHIN Signs and Risks Affect Body Systems • Body Signs • Measurable values that have trajectories over patient lifetimes e.g. blood pressure, HbA1c, BMI, Cholesterol … • Signs can represent chronic conditions such as hypertension, diabetes, obesity, hyperlipidemia • Quantized & normalized using Likert scales (1-5) • Initial values drawn from configurable prevalence data • Risk Factors • Patients have risk factors such as smoking, diet, alcohol use, drug use, promiscuity • Risks can affect the trajectories of signs & the likelihoods of complications • Patient risks initially drawn from configurable prevalence data • As patients age, they acquire risks drawn from incidence data Copyright 2014,2015 MiHIN Shared Services. MiHIN Patient State Drives Diagnoses & Encounters • Diagnoses (CQM measure diagnoses) • Patient state is calculated based upon systems, risks & signs • Incidence & prevalence likelihoods based upon published medical studies and experience (e.g. Framingham) • System health state changes drive diagnosis and encounters • Most likely diagnosis can be computed from risks & signs when not specified by organ, system or risk logic • Quality Measures • Sampled from most likely diagnosis measures • Drive patient encounters via scripted CAT-I event sequences embodying clinical knowledge • Patient Encounters • Produce CQM reports, ADT events & ACRS Care Teams • Outcomes can influence signs & risks to close the feedback loop and improve longitudinal histories Copyright 2014,2015 MiHIN Shared Services. MiHIN The Interactions Can Be Very Complex • • • • • Diet & Exercise risks influence BMI, Lipid & HbA1c signs Alcohol, Drug & Promiscuity risks influence Pregnancy incidence Alcohol & Diet risks influence pregnancy complication incidence Alcohol & Promiscuity risks influence STD incidence Smoking risk + Pregnancy, BMI, BP, Lipids & HbA1c signs influence Neurological & Cardiovascular system morbidities & mortalities • Eyes: diabetic retinopathy leading to blindness • Kidneys: diabetic renal disease leading to kidney failure • Peripheral nerves: diabetic neuropathy leading to amputations • Heart: coronary heart disease leading to Afib & AMI • Brain: hemorrhagic, ischemic stroke • Circulatory: vascular disease, venous thromboembolism • PatientGen approximates these interactions to produce more credible, but not epidemiologically accurate patient life histories Copyright 2014,2015 MiHIN Shared Services. MiHIN Patient Gen Today • 28 important conditions are modeled with credible precision • Incidence & prevalence models are based upon published medical studies and Internet based estimates • All 2014 EH and EP CAT-I measure reports can be produced • Event scripting can be specified using Cypress Bonnie tools • Simulations can be done at multiple resolutions, from hourly to monthly iterations (weekly is default) • Populations are limited only by available memory • Standard MiHIN patient and provider personas have been coded and participate in each simulation run • Providers are patients too: they age, retire, die and are replaced as needed by the hospitals and practices they serve Copyright 2014,2015 MiHIN Shared Services. MiHIN PatientGen In The MiHIN Context • • • PatientGen Can Produce Patient Care Teams (attribution) ADTs CAT-I CQMs Newborn Screenings Death notifications FHIR Resources Immunizations Reportable Labs Syndromics CCDs From simulated patients undergoing simulated health state changes in a controlled but random manner, based upon real-world probabilities With No Protected Health Information Copyright 2014,2015 MiHIN Shared Services. MiHIN Patient Gen MIDIGATE™ CQMRR Tableau Remaining Challenges • Improvements in modeling of medical conditions to improve breath of coverage and longitudinal clinical relevance • Additional body signs and risk factors needed for longitudinal clinical relevance • Implementation of actual treatment outcomes to reduce subsequent morbidity risks for effective treatment regimens • Better integration with Bonnie for scripting • More complete output of FHIR resources • Additional HL-7 messages (e.g. Immunizations, Syndromics Surveillance, Reportable Labs, Cancer, HIV) • Implementation of symptoms to support CCD messages • User interface development to simplify configuration and execution Copyright 2014,2015 MiHIN Shared Services. MiHIN The Open Source Option Is Under Consideration • Open Source means more hands, eyes and energy to improve quality & advance PatientGen capabilities across multiple fronts • Open Source means more organizations can benefit from simulated healthcare data • We favor Apache-style meritocracy for organization & team roles • Successful open source projects require continuity of leadership and direction • MiHIN is seeking external funding sources to provide this leadership Copyright 2014,2015 MiHIN Shared Services. MiHIN FHIR Database Contents • 367 Encounters – model Active Care Relationships • 235 Patients – synthetic patients • Michigan demographic profiles • Includes 16 MiHIN standard “personas” • 284 Practitioners – synthetic PCPs and specialists • 46 Organizations – synthetic hospitals & practices • 2215 Bundles – groups of related patients • One gold standard patient • 24 perturbations of that patient • 1-8 of patient fields randomly perturbed • 3 random perturbations at each level FHIR Resources And Linkages Bundle (2215) Patient Matching Bundles Patient Patient Patient Patient w/ Encounter (367) Perturbations patientId patientId Patient (235) practitionerId Practitioner (284) organizationId Organization (46) Patient-Provider-Organization Attribution Encounters Questions? Jeff Eastman, Ph.D. MiHIN Directory Architect [email protected] http://www.mihin.org Copyright 2015 Michigan Health Information Network Shared Services 30