OSHPD’s Non-public Data Request Process

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Presentation transcript:

OSHPD’s Non-public Data Request Process Presenter: Jonathan Teague And Louise Hand

When Public Data Is Not Enough Some research requires access to the confidential file

OSHPD Non-public Data Hospital Patient Discharge Data (PDD) Emergency Department Data (ED) Ambulatory Surgery Data (AS) California Coronary (Artery Bypass Graft CABG) Outcomes Reporting Program (CCORP/PDD) Vital Statistics Birth and Death Master files linked to PDD “Birth Cohort” file PDD-Death Linked file Other linked products under discussion

Access to Confidential Patient-level Information

OSHPD Non-public Data Patient level records, in non-deidentified data sets Specific legal requirements must be met to access this data Information Practices Act (IPA) – CA Civil Code §1798.24 et seq. Health Data Act – CA Health & Safety Code §128766 IPA is legal avenue for university-sponsored researchers

AB 2876 Non-public Data Review Patient level records, in non-deidentified model data sets Specific legal requirements must be met to access this data AB 2876 Hospitals and Public Health Departments means to access non-de-identified PDD, ED and AS data sets

OSHPD Data and IRB Review Committee for the Protection of Human Subjects (CPHS) is state IRB for California Health & Human Services Agency OSHPD policy: all IPA confidential data requests must have current approved CPHS protocol, to be maintained while data is in researchers’ possession.

OSHPD Data and IRB Review CPHS also has statutory responsibilities for privacy protection under the Information Practices Act “Data only” projects can receive expedited review See: http://www.oshpd.ca.gov/CPHS/index.htm for forms and information

Statutory Requirements Applied to Data Requests Disclosures limited to “minimum necessary” data required to conduct the proposed research Data will be “sub-set” to achieve this Reduce number of records to those actually required for research (including control/comparison groups) Includes geographical, age, and gender subsets Reduce suite of data elements in each record to those actually employed for research The more precise the subset, the easier to pass review

Statutory Requirements Applied to Data Requests Researcher cannot “re-identify” patient records, by linking to other data files or otherwise adding identifiers to the OSHPD file Persons with access to the data must be specified, including consultants Secure information environment for working with the data Products (publications, etc.) must not contain any patient level information Address small cell sizes in presentation of research results

Requesting Non-public Data Two principal steps: Approved OSHPD application for data Approved CPHS Project Protocol The two must be consistent in terms of the data desired and purposes for which it is sought Recommended to come to OSHPD first, to ensure that data specifications are consistent between OSHPD data request and CPHS project protocol

Requesting Non-public Data Data grid contains detailed justification for each element required Sensitive data elements will entail more scrutiny University (“non-profit educational institution”) must sponsor the data request Signatures by PI(s) and Department Chair or equivalent university official, on Protocol OSHPD Chief Information Officer is final arbiter of requests for confidential data

Modes of Access to Non-public Data Typically data is made available to requestor as a time-limited data release on DVD OSHPD currently experimenting with on-site data availability Similar to research data centers at CDC National Center for Health Statistics or the U.S. Bureau of the Census Goal is minimization of risks of inadvertent disclosure of confidential information

Pricing of Non-public Data Data pricing policy: Most recent three years of data can be provided at no charge to eligible non-profit requestors (e.g., presently, 2005-2007) $200/year for PDD other data years $200/for half year for ED/AS other data years Linked data products (PDD/VSD or /VSB) require additional payment to Dept. of Public Health for their data files incorporated in the product files. OSHPD cannot discount the DPH portion of the data fees. This is $200 per year of VSD or /VSB

For Non-public OSHPD Data Contact LOUISE HAND – OSHPD/HID/HIRC Telephone: (916) 326-3813 E-mail: Louise.Hand@oshpd.ca.gov Website: www.oshpd.ca.gov For web issues contact: OSHPDWebmaster@oshpd.ca.gov

Questions?