Health Data Nova Scotia (HDNS) Data Access Committee Presented by - - PowerPoint PPT Presentation

▶
health data nova scotia
SMART_READER_LITE
LIVE PREVIEW

Health Data Nova Scotia (HDNS) Data Access Committee Presented by - - PowerPoint PPT Presentation

Mar 03, 2023 278 likes •610 views

Health Data Nova Scotia (HDNS) Data Access Committee Presented by Katelyn Frizzell Sept. 20, 2017 1 1 TODAYS INTRODUCTION HDNS Data Holdings / Documentation Data Access Process Data Access Committee Other Data Access

slide-1
SLIDE 1

1

Presented by Katelyn Frizzell

  • Sept. 20, 2017

Health Data Nova Scotia (HDNS)

Data Access Committee

1

slide-2
SLIDE 2

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

slide-3
SLIDE 3

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

slide-4
SLIDE 4

WHAT IS OUR FOCUS?

  • Supporting data driven research for a

healthier Nova Scotia

Nova Scotia Data Access Seminars : HDNS 4

slide-5
SLIDE 5

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

slide-6
SLIDE 6

WHAT DATA DO WE OFFER?

  • De-identified
  • Linkable using

encrypted identifiers (i.e., eHCNs)

  • Documented

Nova Scotia Data Access Seminars : HDNS 6

slide-7
SLIDE 7

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

slide-8
SLIDE 8

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

slide-9
SLIDE 9

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

slide-10
SLIDE 10

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

slide-11
SLIDE 11

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

slide-12
SLIDE 12

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

slide-13
SLIDE 13

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
  • utpatient 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

slide-14
SLIDE 14

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

slide-15
SLIDE 15

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

slide-16
SLIDE 16

Nova Scotia Data Access Seminars : HDNS 16

WHAT IS THE PROCESS TO GAIN ACCESS TO OUR DATA?

slide-17
SLIDE 17

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

slide-18
SLIDE 18

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

slide-19
SLIDE 19

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

slide-20
SLIDE 20

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
  • f 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

slide-21
SLIDE 21

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

slide-22
SLIDE 22

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

slide-23
SLIDE 23

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

slide-24
SLIDE 24

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

slide-25
SLIDE 25

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

slide-26
SLIDE 26

DAR (cont’d)

Nova Scotia Data Access Seminars : HDNS

List of Variables by Project Objective

Please complete this table as per the examples provided below. Depending on the nature of the study methods and the data being requested, it may facilitate the work of the Data Access Committee to create separate tables for specific study

  • bjectives or research questions. Alternatively, the table(s) may be completed in a separate file and attached as Appendix 4.

For information on HDNS datasets and variables, refer to the HDNS Data Dictionaries (http://dictionary.hdns.dal.ca/)

Objective X:

Source Dataset Variable (identify whether HDNS or derived variable) Level of Identification Time Span Why is this element required in the analysis? Why is this level of identification required? MASTER e.g. Age Age of each person >65 1999-Present To calculate age- adjusted incidence rates Categorized age variable cannot be used for calculating age adjusted incidence rates CIHI DAD e.g. Postal code Urban/rural flag based on second digit of postal code 1999-Present To adjust for rural residence A flag is sufficient for adjusting for rural residency

26

* Include any dxcodes, procedure codes after the table(s)

slide-27
SLIDE 27

LINKING DATA AT HDNS

DATE, ADDITIONAL DETAILS (set this text using “Header & Footer) 27

Include a diagram or description in the DAR along with variable names, etc.

slide-28
SLIDE 28

DATA ACCESS AND RESEARCH ETHICS

  • NSHA, Dalhousie, IWK
  • REB approval before or after data access approval?
  • Chicken & egg
  • Data release
  • REB approval is required

Nova Scotia Data Access Seminars : HDNS 28

slide-29
SLIDE 29

LAST STEPS

  • Signed approved DAR
  • REB approval letter
  • Signed
  • Confidentiality Agreements (CA)
  • Contractual Agreement for Data Access and

Management (CADAM)

  • HDNS Privacy Training
  • CV’s

Nova Scotia Data Access Seminars : HDNS 29

slide-30
SLIDE 30

MORE IMPORTANT INFORMATION

  • Project charter
  • Signed by PI, HDNS Manager/DAC Chair
  • Details deliverables, payment agreements, etc.
  • Record-level data remains on HDNS data platform
  • Aggregate data released, cell size >5
  • Publication disclaimer as per HDNS CADAM:
  • “The data (or portions of the data) used in this report were made available by Health Data

Nova Scotia of Dalhousie University. Although this research is based on data obtained from the Nova Scotia Department of Health and Wellness, the observations and opinions expressed are those of the authors and do not represent those of either Health Data Nova Scotia or the Department of Health and Wellness".

Nova Scotia Data Access Seminars : HDNS 30

slide-31
SLIDE 31

ACKNOWLEDGEMENTS

  • Dr. Jennifer Payne, MSSU Data Access presentation
  • Dr. Leslie Anne Campbell, former HDNS Director
  • Steven Carrigan, former HDNS Manager
  • MSSU Data/Privacy Advisory Committee, Ethics

Working Group, REB Review of Projects Involving Secondary Use of Data

Nova Scotia Data Access Seminars : HDNS 31

slide-32
SLIDE 32

QUESTIONS?

Nova Scotia Data Access Seminars : HDNS 32

Website: http://medicine.dal.ca/hdns Emails: hdns@dal.ca kfrizzell@dal.ca