Health Data Nova Scotia (HDNS) Data Access Committee Presented by Katelyn Frizzell Sept. 20, 2017 1 1
TODAY’S INTRODUCTION • HDNS • Data Holdings / Documentation • Data Access Process • Data Access Committee • Other Data Access Considerations • Q&A Nova Scotia Data Access Seminars : HDNS 2
WHAT IS HDNS? • An agent of the Nova Scotia Department of Health and Wellness • A unit of the Faculty of Medicine, Department of Community Health and Epidemiology established in 1993 • Closely partnered with the Maritime SPOR SUPPORT Unit (MSSU) • Nova Scotia Data Repository Nova Scotia Data Access Seminars : HDNS 3
WHAT IS OUR FOCUS? • Supporting data driven research for a healthier Nova Scotia Nova Scotia Data Access Seminars : HDNS 4
MORE SPECIFICALLY… • HDNS facilitates research and innovation in Nova Scotia: • Linkable administrative health data • Statistical analyses • Secure, controlled environment • Respecting privacy and confidentiality Nova Scotia Data Access Seminars : HDNS 5
WHAT DATA DO WE OFFER? • De-identified • Linkable using encrypted identifiers (i.e., eHCNs) • Documented Nova Scotia Data Access Seminars : HDNS 6
DATA HOLDINGS MSI Insured Patient Registry • Source: Medavie Blue Cross • MASTER: DOB, sex, patient county, etc. • One record per patient per program • ELIGIB: eligibility status, start/end dates, program, etc. • One record per patient per program • POSTAL: residential postal codes, from/to dates, etc. • One record per patient per reported change of residence Nova Scotia Data Access Seminars : HDNS 7
DATA HOLDINGS Licensed Provider Registry • Source: Medavie Blue Cross • DOCS: ID’s, DOB, birth location, sex, specialties, etc. • One record per provider • EDUC: year/location of school, specialty received, etc. • One record per provider per degree/specialty • OPTIN: provider type (dentist, NP, PH, etc.), program, to/from dates, etc. • One record per provider per period Nova Scotia Data Access Seminars : HDNS 8
DATA HOLDINGS MSI Physician Billings • Source: Medavie Blue Cross • One record per billable item • MED: • Who (Provider ID) • Did what (CCP Procedure codes) • To whom (Patient ID) • Why (ICD-9 diagnosis codes) • Where (office, hospital, etc.) • When (diagnosis date) • What was the cost? Nova Scotia Data Access Seminars : HDNS 9
DATA HOLDINGS Seniors Pharmacare • Source: Medavie Blue Cross • One record per prescription • PHARM: • Provider info • Patient info • Drug (ATC, DIN) • Quantity dispensed • Billing info & payment responsibility • and more Nova Scotia Data Access Seminars : HDNS 10
DATA HOLDINGS Patient Geography • Source: Generated at HDNS using patient registry, Postal Code Conversion File (PCCF), census data • Probabilistic linking of residential postal codes to census areas • One record per patient per residence • Allows studies to use census neighbourhood characteristics • WHERE: • Census geographic details (division, subdivision, dissemination area, etc.) • Avg/median family & household income • Lat/long • and more Nova Scotia Data Access Seminars : HDNS 11
DATA HOLDINGS CIHI – Discharge Abstract Database (DAD) • Source: Canadian Institute for Health Information • One record per hospital discharge • DAD: Over 650 variables! • Patient demographics • Provider (type, number, etc.) • Diagnoses & procedures • Dates (admission, discharge, etc.) • Transfers between facilities • Locations (hospital number, type, etc.) • Many, many more Nova Scotia Data Access Seminars : HDNS 12
DATA HOLDINGS CIHI – National Ambulatory Care Reporting System (NACRS) • Source: Canadian Institute for Health Information • One record per healthcare encounter in ED, day surgery, or outpatient clinics • NACRS: • Patient demographics • Provider info (type, number, etc.) • Service provided • Dates & times • Problem • Interventions • Uptake in NS was slow (2011) & still incomplete Nova Scotia Data Access Seminars : HDNS 13
DATA HOLDINGS Vital Statistics: Death Data • Source: NS Vital Statistics • One record per death • VITAL: • Patient demographics • Place of birth and death • Underlying and other causes of death (up to 13) • Date of death • and more Nova Scotia Data Access Seminars : HDNS 14
WHAT’S NEW AND EXCITING? • Expanding Data Holdings • New variables in Physician’s Billings database • Department of Community Services • Drug Information System • And more • Increasing data accessibility • Hadoop system • Remote access • Multiple analytical software Nova Scotia Data Access Seminars : HDNS 15
WHAT IS THE PROCESS TO GAIN ACCESS TO OUR DATA? Nova Scotia Data Access Seminars : HDNS 16
GENERAL OVERVIEW • Contact us: meet to discuss data, feasibility, approach • Submit your HDNS Data Access Feasibility and Cost Estimate Request • Apply for funding • Apply to REB Nova Scotia Data Access Seminars : HDNS 17
GENERAL OVERVIEW (CONT’D) • Submit your Data Access Request to the HDNS Data Access Committee • Think about project in reverse, ask for minimum • Get in touch with the Research Navigator • Fill in Data Access Request form • Prepare for Data Access Committee review: • Attend the meeting – project overview, clarifications in person Nova Scotia Data Access Seminars : HDNS 18
HDNS DATA ACCESS COMMITTEE (DAC) • PURPOSE: to review requests to conduct secondary data analysis for research purposes using the administrative databases held by HDNS of Dalhousie University for privacy, security, and confidentiality concerns. Nova Scotia Data Access Seminars : HDNS 19
HDNS DATA ACCESS COMMITTEE (DAC) • RESPONSIBILITIES • Ensure data requested is appropriate for study objectives/methodology • Protect confidentiality of PHI in the custody of HDNS and privacy of the individual who is the subject of that information • Ensure that conditions pursuant to the HDNS agreement with the Department of Health and Wellness (DHW) for access to DHW data have been met • Uphold standards of data access consistent with the highest levels of security, confidentiality and privacy in Canadian legislation • Ensure that any proposed record linkage is not harmful to individuals or providers and the benefits derived from the record linkage are clearly in the public interest. Nova Scotia Data Access Seminars : HDNS 20
Personal Health Information Act (PHIA) • A custodian may disclose personal health information about an individual to a researcher if the researcher a) submits to the custodian i. an application in writing, ii. a research plan, and iii. a copy of the submission to, and decision of, a research ethics board that approves the research plan; and b) enters into the agreement required by PHIA Nova Scotia Data Access Seminars : HDNS 21
PHIA (CONT’D) • A custodian may disclose PHI about an individual to a researcher without the consent of the subject individual if a) the researcher has met the requirements (see previous slide); b) a research ethics board has determined that the consent of the subject individuals is not required; c) the custodian is satisfied that: i. the research cannot be conducted without using PHI, ii. the PHI is limited to that necessary to accomplish research, iii. the PHI is in the most de-identified form, iv. the PHI will be used in a manner that ensures its confidentiality, and v. it is impracticable to obtain consent; and d) the custodian informs the Review Officer. Nova Scotia Data Access Seminars : HDNS 22
HDNS DAC MEMBERSHIP • Operates under authority of DHW Senior Executive Director, Investment & Decision Support • Structure • Data management professional • Secondary data analysis professional • Privacy, confidentiality, security professional • DHW representative • HDNS representative • Head, Dalhousie Department of Community Health & Epidemiology (ex-officio) • Other members as appropriate • Decisions made by consensus • Quorum – 50% of membership (excluding ex-officio) • Minimal risk – chair and one committee member Nova Scotia Data Access Seminars : HDNS 23
SUBMITTING A DATA ACCESS REQUEST • DAC Monthly meetings • Data Access Requests (DAR) must be submitted two weeks prior • Full submission • DAR form • REB full submission • Proposal Nova Scotia Data Access Seminars : HDNS 24
DATA ACCESS REQUEST (DAR) • Become familiar with datasets and variables • List all team members • Provide justification for why any team members need to see line-level data • Detailed objectives/methodology • Benefits/ harms & risks • TIP: there’s always a small risk in using admin data for research • Consent?? Nova Scotia Data Access Seminars : HDNS 25
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