meeting the challenge
DESCRIPTION
Meeting the Challenge. The National Population Health Survey and Data Access. E. Hamilton UNB Libraries IASSIST 2003. Outline. NPHS: Background & Confidentiality Challenges NPHS Products Dissemination Evaluating Success of Strategy Concluding Observations. Canadian Context. - PowerPoint PPT PresentationTRANSCRIPT
Meeting the Challenge
The National Population Health Survey and Data Access
E. HamiltonUNB LibrariesIASSIST 2003
Outline NPHS: Background &
Confidentiality Challenges
NPHS Products Dissemination
Evaluating Success of Strategy
Concluding Observations
Canadian Context
Federal/provincial/territorial division of powers and responsibilities
Health and privacy legislated at the federal level and at the provincial level
Canadian Context NPHS dissemination affected by:
Statistics Canada Act and policies Privacy Act Privacy legislation at provincial levels Ethics in research guidelines
NPHS Background
NHIC Task Force on the State of Health Information in Canada (1990-91)
Identification of data gaps and related problems in sharing health information
Proposal for a national health survey to provide more comprehensive information on population health status
NPHS Objectives
To provide measures of health status for policy
To provide data for analytic studies To provide panel data to reflect dynamic
process of health and produce periodic cross-sectional estimates
To provide provinces with survey capacity to supplement content or sample
To allow the possibility of linking survey results to administrative data
Risks … More complete information being
collection
Tools and techniques available to amass personal information
Increase in “market potential” of personal information
Potential for misuse of health information
Difficulty to control information use
Any data safety breach potentially serious to mandate of ethical data collectors
At the time of NPHS design, 67% of Canadians said they would oppose free sharing of health care information
And yet…
In the NPHS conducted in 1994/95:
94% of survey respondents consented to have their data linked with administrative health records
96% consented to have data shared with provincial ministries of health.
Between cycle 1 and cycle 2, NPHS retained 93% of longitudinal sample
NPHS Administration Household survey: general and health
components Complex survey design using strata and
based on LFS frame; Respondents to be followed for 20 years
Institutional survey
Northern survey
Cycle 1 Household survey in the field in June 1994
NPHS Products Methodology and survey
documentation, articles in Health Reports, aggregate statistics in national “health report card”
Data products in variety of formats
Workshops, grants, and seminars
NPHS Data ProductsYear Survey Maste
rShare*
PUMF Comments
1994/95
Household (both files)
Yes Yes Yes Suppl. survey data available in all flavours. Dummy file for remote access for Health file
Institutional Yes Yes Yes
Northern Yes Yes No
1996/97
Household (both files)
Yes Yes Yes Longitudinal file for cycle 1 & 2 Dummy files for remote access
Institutional Yes Yes Yes
Northern Yes Yes No
1998/99
Household (both files)
Yes Yes Yes Dummy files for remote access
Institutional Yes Yes No
Northern Yes Yes No
2000/01
Household (both files)
Yes Yes No Longitudinal only; end of PUMFs; dummy files for remote access
Institutional Yes Yes No
Northern Yes Yes No
Service
Statistics Canada Website
Depository Service Program
Data Liberation Initiative
Sales & Customized Tabulations
Remote Job
Submission
Research Data
Centres
Who is eligible
General public
General public through DSP libraries
Post-secondary academic staff & students
Individuals or organizations
Researchers with accepted proposals
Approved researchers
Conditions
Available on the Internet at www.statcan.ca
Available on site
Restricted to teaching and research purposes
Contractual; standard fees usually apply
Arrangement between STC & researcher; fee charged
SSHRC peer review & deemed STC employee status
Products
- The Daily - Canadian Statistics- Census- Community profiles- Downloadable publications
- Paper publications- Electronic publications & select CDs
Standard data products: aggregate databases, public use microdata files, and geography files
Standard data products; custom tables that have been processed by STC;access to specialized databases
Analytic syntax built by researcher using synthetic files, and STC processing
Confidential data files from the longitudinal surveys begun in the 1990’s, such as the NPHS, SLID, NLSCY
Notes
Warning: some services on the web site are fee-based
Some DSP libraries provide off-site access to authenticated users
Interface to CANSIM I and Trade Analyzer available through CHASS (University of Toronto)
Specialized databases include CANSIM II and the Trade Analyzer
Available for only select surveys; this service most developed for the NPHS
Applications can be submitted through the RDC/SSHRC web site
Continuum of Access to Statistics Canada Products
Challenges?
•Multistage cluster sample design increases complexity (bootstrap weighting and the problem of variance)
•Attrition in population in Institution survey
•Linkage issues for administrative units and files
•Supplement questions and buy-ins (and you thought life was complicated enough!)
Research Project
Research Objective: to discover evidence of use of the NPHS, a
longitudinal survey by Statistics Canada with significant confidentiality challenges
Methodology:Using established peer-reviewed databases as well as grey literature searching techniques, sought out evidence of data use and knowledge transfer relating to the NPHS
Research Findings
557 Items and counting!
271 articles 105 unique journal titles 147 primary authors of articles
115 conference presentations/reports
31 theses / dissertations
Research Findings
0
50
100
150
200
250
Cross-sectional
Longitudinal Share/linked Both
PUMFs received greatest use in file types identified
0
50
100
150
200
250
300
Cycle 1 Cycle 2 Cycle 3
Cycle 1-3
Cycle 3
Cycle 2
Cycle 1
Cycle 1 remains file with most research use*
* Cited twice in 2003
Research FindingsArticles by year
0
10
20
30
40
50
60
70
80
90
1995 1996 1997 1998 1999 2000 2001 2002 2003
HHD cycle1
PUMF release
HHD cycle2
PUMF release
HHD cycle3
PUMF release
CCHS cycle 1.1
PUMF release
Observations NPHS is a success story in getting data
into the hands of analysts
Though concerned with privacy, respondents trust Statistics Canada enough to allow sharing of data
Complexity in design posed challenges for cross-sectional data file to preserve confidentiality
Observations Challenge with linkage & confidentiality related to
recipient community (priorities, laws, protocols)
Longitudinal file resolved through provision of dummy files for remote job submission & RDCs
Cross-sectional analysis for lower levels of geography now available through CCHS
Despite remarkable research outcomes, no reported breaches in confidentiality by research community
Future Research Completion of grey literature tracking for
NPHS to date
Monitoring RDC analytical output
Tracking CCHS research output
Identifying further “Best Practices” in data dissemination designed to enhance access to data while protecting confidentiality
There is more to come…
Thank you for your attention!