Big Data: Privacy, Governance and Data Linkage in Health Information How BC s Health System Matrix Project Met the Challenges of Health Data Martha Burd, Health System Planning and Innovation Division Ministry of Health, British Columbia, Canada martha.burd@gov.bc.ca 1 Health System Matrix 5.0
Overview Challenges of Health data Long term Goal for Access, Privacy, and Analysis BC s Health System Matrix How it handles some of the challenges How it was developed What we ve learned 2
Challenges of Health Data Patient has multiple encounters with Health System in year Information on encounters collected in separate databases No one database can tell the whole story! Each encounter with health system collects point-in-time info on patient s health Data collected different data, different definitions Medical condition in one source Physical / cognitive in other source May miss the pattern or trajectory Tests Need a BIG Data Approach Tests 3
Special Challenge: Chronic Conditions Data sets may only collect single diagnosis per encounter BC s Virtual Chronic Condition Registries Chronic condition recorded when initially diagnosed. If stable, may not appear on later encounters Analysis based on diagnoses recorded that visit or that year may miss chronic conditions Challenge: How do you identify people with Chronic Conditions if the condition isn t reported for every encounter? Used Ministry data from mid 1990s to present, to look for patterns of chronic condition diagnoses National algorithms for 26+ chronic conditions Look for 2 diagnoses from physician or 1 hospital in 365 day period If criteria met, add person to registry Therefore identifies person has chronic condition even if not reported in year Registry used to estimate prevalence rates, identify of populations for analysis and target populations 4
Goal: Cross-System view of Health and Utilization Staying Healthy Getting Healthy Living with Chronic Conditions Towards End of Life Linkage Fiscal Year Summary Population Segmentation Measure in $ BIG DATA picture of BC residents and their use of $10.5 Billion in Publicly Funded Health Care in 2012/13 Size of dot = $ of health care used by Age Group Source: BM5.0, BC Ministry of Health 5
Long term Goal for Access to Health Information Information is available, appropriate access to appropriate information Public Access Open Access to Ministry Cross-System Access Role Access to all SMART databases Master Database Access Access to specific database(s) Can apply for limited time access for specific project PI Data Access Getting there But we re not there yet.. 6
Summary Tools DAD query tool via the Web Discovery tools for Interactive pre-designed queries Answers without Access Hospital Workload excel tool The Blue Matrix Health System Matrix excel tool 7
SMART Database: Health System Matrix aka The Blue Matrix Built on Client Roster of 1 row for each BC resident, each year Fiscal year summary of services from each Ministry Database Health Ideas Data Warehouse CLIENT ROSTER Physician Billings Hospital Abstracts DAD NACRS ED Visits Rx Drugs Home Care & Res Care CLIENT ROSTER Health System Matrix Database Chronic Condition Registries Physician Attachment Program Eligibility John Hopkins ACG Census Data by Postal Code Other information can be added from outside warehouse 8
Getting There: SMART tables make a BIG DATA approach a reality Challenges Databases are complex. Analysts need training and expertise in each database Data in separate databases Challenges for cross system analysis Access: Need access to each database or get extract dataset from database analyst Linkage: Need common identifier for linkage (personal health number or encrypted identifier) Challenge to link: multiple encounters in FY by point in time, or cases, or episode of care Databases talk different languages (ICD9, ICD10, NACRS discharge diagnosis). Workload measured in different terms (dollars, hours, days, visits) IT Support: Developing a new database is a long, expensive, complex process. Health System Matrix Database SMART database (Standard Method Analysis Ready Tables). Easier to train analysts in use of summary dataset Compile into 1 database: summary of all services used by each BC resident, each FY Matrix database is designed for cross system analysis Access: Analysts have access to Health System Matrix database in addition to their expertise database Linkage: Encrypted common identifier Fiscal year summary. 1 row per BC resident (does not show provider, dates, details) Use common language: ICD9/10/NACRS by Major Clinical Classification. New workload measures encounter days. Workload measured in dollars to sum across programs Database built by team analysts with programming skills and expertise in individual databases, or from extracts. Provided needed flexibility as Matrix matures over time. IT publishes tables to warehouse and controls access. Approach Bring in the key info Add value to the data Take time to do the complex things, so they are done once, correctly, and available to all Make decisions on the Ministry standard categories Be prepared to evolve over time Improved access and linkability while preserving confidentiality 9
Starting point: need for information, not need for database A single journal article changed the way we analyze data Using Population Segmentation to Provide Better Health Care for All: The Bridges to Health Model, by Joanne Lynn et al. Milbank Quarterly, Volume 85, Issue 2, pages 185-208, June 2007. Our branch was given the challenge to create population segments Heath Status Groups based on available ministry data. Pathway of our discussions and thinking. What populations do we want to separate out? What data could we use? We ll need to bring all the data into a single database What service lines should we separate out? How granular do we want the data? 10
Health System Matrix Also known as the Blue Matrix Health System Matrix 5.0 2012/13 unless otherwise specified 11
Key Concept: Population Segments BC s Health System Matrix divides the BC population into13 health status groups End of Life (palliative care) Frail in Care (residential care) Cancer High Complex Chronic Conditions Frail in the Community Maternity and healthy newborns Mental health & Substance Use Medium Complex Chronic Conditions Low Complex Chronic Conditions Child and Youth with non-chronic conditions Adults with non-chronic conditions Healthy / Minor acute illness Non-users Highest health care needs Lowest health care needs Towards Last Years of Life Living with Chronic Conditions and Disabilities Getting Better Staying Healthy 12
Chronic Conditions Population More than 2 million British Columbians have one or more of these 23 chronic conditions. Matrix groups people with these conditions into High, Medium and Low Complexity groups, based on complexity of individual conditions or selected co-morbidities What we ve learned: Categorizing by High, Medium, and Low CC provides an easier way of analysing multiple comorbidities 13
Distribution of Chronic Conditions Comorbidities can result in specific chronic conditions appearing in many population segments. Example: 388,000 Diabetics: Insight for planning: Dementia: 71,500 people, 39% live in Res Care. How to provide care and support for care givers for ~ 60% living in the community? Sums to 100 % across pop segments Source: 2012/13 Health System Matrix 5.0 14
Population Segment Chronic Conditions Profiles % of Population Segment with specific chronic conditions Insight for planning: 73% of people in Residential Care have dementia (2012/13) Source: 2012/13 Health System Matrix 5.0 15
Chronic Conditions among Residential Care Clients Complexity of People in Residential Care is increasing Example: % of Long Term Residential Care clients with Dementia: 50% in 2002/03 73% in 2012/13 Source: 2012/13 Health System Matrix 5.0 16
Population Segments = Health Status Groups How should population be segmented? Consultation: Which populations were important to separate out? Which ones could be inferred from utilization data or other Ministry data in year? End of life: People in end of life programs PharmaCare Plan P, Physician palliative care, Hospital admission for palliative Frail in Care: Living in long term residential care HCC permanent RC clients, PharmaCare Plan B (Licensed RC facilities) Cancer: Ministry does not have data from BC Cancer Agency, after patient is referred by family physician. Therefore, assume that patient is receiving non-reported cancer treatment in year following cancer diagnosis on family physician fee for service billing. Cancer diagnosis will put person in Cancer health status group for 2 years. Frail in Community: Living at home with assistance in activities of daily living Assisted Living, Home support, CSIL (Community Services for Independent Living), Adult day services <18 population identified by PharmaCare Plan F: Ministry of Children and Family Development s At Home program Maternity and healthy newborns: Wanted to separate healthy newborns from newborns with health issues (who are assigned to Major Conditions) What we ve learned: Pop segments should be meaningful to the clinician, and identify populations with different health care needs 17
Development of Health Status Groups Groups identified through insight from health care records over time Chronic conditions Based on Chronic Condition Registries + PharmaCare Cystic Fibrosis Plan D Separated into Low, Medium, High Complex Chronic Condition groups Separated by specific condition(s), not number of conditions Severe Mental Illness and Substance Use: Mental Health Program s list of diagnoses identifies specific mental health conditions and substance use issues, but has no measure of severity MH Recommended a definition of severe condition: If person was hospitalized for mental illness anytime in a 5 year period, or in PharmaCare Plan G (Mental Health) or methadone in year How to divide the remaining 51% of BC Residents? Non-Users Medical Service Plan registrants (mandatory coverage) who had no services in year (as reported to Ministry databases) Healthy & Minor acute illness Used less than $1,500 of physician services and/or less than $1,000 of PharmaNet (includes out of pocket prescription drugs), and no other health care service. Arbitrary decision! Major Condition: Children and Youth Under 18 years, and Adults 18 and older All remaining BC residents who were not assigned to another health status group. What we ve learned: Pop segments don t have to be perfect. They will evolve over time. 18
Assignment to Health Status Groups Person with multiple health conditions can be assigned to multiple pop segments. For most analysis, people are assigned to Unique pop segment that represents their highest need for health care in the year. What we ve learned: Unique assignment is useful, because everyone and every service is counted only once. 19
Key Concept: Service Lines BC s Health System Matrix groups services from different types of providers into broad service lines: Primary Health Care Obstetrics & Gynaecology Mental Health & Substance Use* Medical Specialist Oncology* Emergency Departments Acute Medical Care Elective surgical Transplant surgery & aftercare Trauma & Emergency surgery Palliative care* Diagnostic pathology & imaging Clinical support therapies (dialysis) Pharmaceuticals Anaesthesia Physical Medicine & Rehabilitation Community supports for Daily living Residential Care Paediatrics Missing from matrix Healthy living Environmental health Health Emergency Management Community Mental health Emergency transport Case Management And services not reported to Ministry 20
Health System Matrix: Value Added information The Matrix summarizes the health care services that are reported to Ministry s administrative databases, and estimated the dollar value of services, where necessary. Ministry s Administrative Databases Additional Health System Matrix Value Added Physician services (MSP) Fee-for-Service (FFS) (billings by fee code, dollars) Alternate Payment Plan (APP) shadow billings 0$ No information from Emergency Dept on APP ICD9 diagnoses Hospital Care (excluding Physician services) Inpatient and Day procedures only: cases, days, Resource Intensity Weights (RIW) ICD10 diagnoses NACRS discharge diagnosis categories Home and Community Care services Professional Home Nursing Visits, Assisted Living Days, Home Support Hours, Adult Day Services Days Residential Care Residential Care days for publicly funded RC clients Publicly Funded Prescription Drugs PharmaCare Paid drugs (dollars) What we ve learned: It s OK to have rough estimates of unit costs. If there are better ones, people will tell you! Physician services (MSP) Estimated $ Alternate Payment Plan shadow billings Estimated $ of ED physician services for ED visits reported for NACRS facilities which do not report in FFS. Calculated ENCOUNTER DAYS; MCC categories Hospital Care (excluding Physician services) Estimated annual unit cost (Cost Per Weighted Case) Estimated hospital care cost for all ED visits Categories: Med via ED, Surg via ED, Med direct, Surg direct. Common Medical Clinical Categories for ICD10, ICD9, NACRS Home and Community Care services Estimated annual unit costs for HCC services Residential Care Estimated annual per diem cost for residential care days Identified people in privately paid residential care Publicly Funded Prescription Drugs Estimated Rx for RC clients in extended care (acute facilities) Patient characteristics Chronic conditions, physician attachment, From Medical Services Plan registration: family formation, income, immigration status, pop segments, new to pop seg. 21
Health System Matrix: Summary of $10.5 Billion in Publicly Funded Health Care Services to BC Residents Health System Matrix 5.0 estimated total $10.5 Billion in publicly funded health care services BC Government Budget Health Function Expenditures totalled $17 Billion (2012/13) Includes MOH and health care services provided by other Ministries Health System Matrix 5.0 summarizes $10.5 Billion or 62% of Health Function expenditures Source: Health Function Expenditures: BC budget and fiscal plan 2013/14 to 2015/16, page 106, compared to estimated dollars of publicly funded health care expenditures tracked in Matrix 5.0 Source: 2012/13 Health System Matrix 5.0 22
Summary of $10.5 Billion in Publicly Funded Health Care Services Used by BC Residents, 2012/13 Source: 2012/13 Health System Matrix 5.0 23
$10.5 Billion in Publicly Funded Health Care Services Average per BC Resident, 2012/13 Source: 2012/13 Health System Matrix 5.0 24
Our Strategic Planning for BC Health Care Role of Health System Matrix in Planning: Profile of Health Authority Residents and their use of health care 25
Health System Matrix Insights into the health of BC residents and their use of $10.5 Billion in publicly funded health care 26
Non-Users look healthy Non-User Definition: BC residents registered with Medical Services Plan but used no services (that were reported to the Ministry) in the year. Interpretation. They are healthy? They needed health care services but did not use them? They used services which are not reported to Ministry? Services from Physicians on alternate payment plans Services provided on reserve Physician services in Alberta % of Population who are Non-Users, 12/13 % of Population in Low Chronic Conditions Stikine Local Health Area Population: Highest % Non-users Very % Low Chronic (under-estimate!) Key point: Diagnoses from encounters is the only way we know that a person has health conditions that need care Source: 2012/13 Health System Matrix 5.0 27
Insight into High Users Range of Health Care $ used by Population segments High Users are by definition: RC clients HCC users Hospital users Pop Segments give more insight into range of use * * Source: 2012/13 Health System Matrix 5.0 28
Emergency Department Visits Combination of NACRS ED visits and MSP Fee-for-Service Billings Source: 2012/13 Health System Matrix 5.0 29
Use of ED: by Attachment to GP Practice % Using ED in 12/13 by Population Segment and Attachment to GP Practice What we ve learned: people who are attached (get majority of GP care from same practice ) are lower users of ED 30
Combo used = insight into health and total $ used View divides ED physician $ by pop segment and combo of services used in 12/13 Using HCC supports for daily living is a marker for higher health care needs Shows importance of using cross-system approach to understand use of Health care What we ve learned: Using Supports for activities of daily living (HCC) is an indicator more complex health conditions 31
New Entrants to Pop Segments Use Services Differently Health Status Change = need for health care Insight: Analysis should separate New from others In pop segment 32
Residential Care Clients Using multiple databases provides new insight CCW: Publicly funded long term RC CCW PharmaCare Plan B: Publicly funded Rx dispensed to people in licensed residential care facilities (includes privately funded RC) Combination identifies RC clients in publicly paid and privately paid RC Publicly funded Extende d Care Publicly funded Standalone Privately funded RC PharmaCare Plan B Source: 2012/13 Health System Matrix 5.0 33
Transition between Population Groups over 10 years Comparing 02/03 to 12/13: New to BC Overall 19% of adults were new to BC in last 10 yrs New to BC: higher % of Non-users, Healthy, and Maternity Stayed the same over 10 years: 52% of Healthy 48% of Low CC 27% of Medium CC 10% in private RC Large change over 10 years: High CC with ADL: 10 yrs ago 3% were in same pop group, 19% had High CC without supports Source: 2012/13 Health System Matrix 5.0 34
Health System Matrix.. Insight into the BC Health System on 3 Levels 1. As a Broad Concept: Think about the health needs of different populations Think about the health conditions that drive service use Think about all the services that people use, across the system 2. As a Data Base: Health System Matrix database tables in Health Ideas Summarizes all services that each BC resident used each fiscal year that are reported to the Ministry databases, 2002/03 to 2012/13. Can be used in analysis across databases, and time 3. Health System Matrix summary Analysis tool in Excel Easy to use, high level summary tool available to all BC residents in broad population segments that describes health status Publicly funded services in broad service lines 35
Thank you! Contact: martha.burd@gov.bc.ca 36