Skip to Content

Research in Oregon

        The state of Oregon provides a number of opportunities for researchers to use privileged and confidential data. All disclosures of protected health information for research purposes are subject to state and federal law; the Department of Human Services can use and disclose de-identified information for research purposes and may disclose identifying information without a written authorization if the Institutional Review Board waives the authorization requirement.1  Health data may be disclosed in accordance with a limited data set data use agreement entered for purposes of research, if the researcher agrees not to make unauthorized use or disclosure of the information and not identify the information or contact the individual.2

        Publicly reported data may be used for research purposes in certain circumstances. Vital records may be used for research purposes, provided there is a research agreement in place.3  Non-identifying information contained in reports on communicable diseases submitted by laboratories may be used to compile statistical and other data.4  De-identified and aggregate ambulatory surgery data may be used for public studies of issues related to clinical practices, health service utilization and health outcomes; records may be obtained for each patient for special studies on the incidence of specific health problems or diagnostic practices.5  Non-identifying information obtained by the long-term care ombudsman program may be used for statistical, case study, or other research.6

        Certain registry data may be utilized for research purposes.  Confidential data from the childhood diabetes database may be used for approved research and studies,7  if the family about whom the confidential information pertains has an opportunity to decline contact regarding research opportunities.8  Individually identifiable information from the Oregon Trauma Registry may be used for approved research.9  Any research performed using confidential cancer registry data must be approved by the Committee for the Protection of Human Research Subjects.10  Information may be released from the Physician Orders for Life-Sustaining Treatment (POLST) Registry to researchers for approved projects, if the researcher agrees to maintain the confidentiality of the information from the registry, provided that this does not limit the use and disclosure of such information for appropriate research purposes.11 Non-identifying information from the prescription monitoring program may be used for research purposes and for special epidemiologic morbidity and mortality studies.12

 

Footnotes

  • 1. Or. Admin R. 407-014-0060
  • 2. Or. Admin. R. 409-022-0070
  • 3. Or. Rev. Stat. §432.121
  • 4. Or. Rev. Stat. § 438.310
  • 5. Or. Admin. R. 409-022-0040
  • 6. Or. Admin. R. 114-005-0040
  • 7. Or. Rev. Stat. § 444.330
  • 8. Or. Admin. R. 333-010-0650
  • 9. Or. Rev. Stat. § 431.635
  • 10. Or. Rev. Stat. § 432.540
  • 11. Or. Admin. R. 333-270-0080
  • 12. Or. Rev. Stat. § 431.966

 

Research in Oregon

Subtopic Statute/Regulation Description
Authorization needed for disclosure of information for research purposes (Cross reference Privacy & Confidentiality) Or. Admin R. 407-014-0060 - Uses and Disclosures of Protected Information for Research Purposes All disclosures of protected health information for research purposes are subject to state and federal law.  The Department of Human Services...
Or. Admin. R. 333-010-0650 - Research Studies A researcher may obtain confidential data from the Childhood Diabetes Database upon obtaining approval from the Oregon Health Authority’s...
Research Or. Admin. R. 114-005-0040 - Confidentiality of Records The identity of residents and complainants is confidential and will not be disclosed unless: The resident or his legal representative gives...
Or. Admin. R. 333-010-0055 - Research Studies The Oregon Health Authority’s Public Health Division may disclose confidential data from the cancer registry system to a researcher if the...
Or. Admin. R. 333-010-0640 - Confidentiality and Access to Data All identifying information required to be reported by practitioners and schools to the Childhood Diabetes Database is confidential.  The...
Or. Rev. Stat. § 192.538 - Notice by health care provider regarding anonymous or coded research Health care providers that obtain individuals’ biological specimen or clinical individually identifiable health information are required to...
Or. Rev. Stat. § 413.196 - Confidentiality and inadmissibility of information obtained in connection with epidemiologic morbidity and mortality studies All information relating to special epidemiologic morbidity and mortality studies, including written reports, notes, records, statements and studies...
Or. Rev. Stat. §432.350 - Vital records exempt from public disclosure It is unlawful for any person to allow an unauthorized person to inspect, disclose, or copy information from vital records or reports in the...
Mortality/morbidity studies (disease specific, or specific to a certain population) Or. Admin. R. 333-009-0030 - Confidentiality/Liability All information collected via the Oregon Death with Dignity Act, including the identity of patients, is not a public record and may not be made...
Or. Admin. R. 333-010-0060 - Special Studies The Oregon Health Authority’s Public Health Division may conduct special studies of cancer mortality and morbidity, and is authorized to obtain...
Or. Rev. Stat. § 432.520 - Reporting requirement All health care facilities where patients are diagnosed or treated for cancer or benign brain tumors must report each case of cancer or benign tumor...
Or. Rev. Stat. § 432.530 - Confidentiality of information All identifying information about cases of cancer or benign tumors that is required to be reported must be kept confidential.  Any additional...
Use of publicly reported data for research purposes Or. Admin. R. 333-010-0050 - Confidentiality and Access to Data All identifying information regarding individual patients, cancer reporting facilities, and practitioners required to be reported to the central...
Or. Admin. R. 333-011-0315 - Disposition of Reports of Induced Termination of Pregnancy Reports of induced termination of pregnancy are statistical reports only and may not be incorporated into the official records of the vital...
Or. Admin. R. 333-270-0080 - Access to Registry Information by Researchers The Oregon Health Authority may release information from the Physician Orders for Life-Sustaining Treatment (POLST) Registry to researchers for...
Or. Rev. Stat. § 432.540 - Use of confidential data The Oregon Health Authority establishes the rules for when confidential data regarding cancer or benign tumor cases can be used to conduct research...
Or. Rev. Stat. § 438.310 - Inspection of laboratory premises The Oregon Health Authority may inspect the laboratory results and records of any clinical laboratory.  The authority may require the owner or...
Or. Rev. Stat. § 444.330 - Confidentiality of information All identifying information reported to the Oregon Health Authority for use in the Childhood Diabetes Database must remain confidential. ...
Access to research information or data Or. Admin. R. 333-025-0120 - Anonymous, Coded, or Exempt Genetic Research A human biological sample or clinical individually identifiable health information may be used in anonymous or coded genetic research only if, prior...
Publicly reported health information used for research (disease specific, registry data) (Cross reference Public Health Data Collection) Or. Admin. R. 409-022-0070 - Limited Data Sets with a Data Use Agreement The Office for Oregon Health Policy and Research may authorize the disclosure of health data in accordance with a data use agreement entered into by...
Or. Admin. R. 410-121-4020 - Information Access The Prescription Drug Monitoring Program system may be accessed by practitioners and pharmacists authorized to prescribe or dispense controlled...
Or. Rev. Stat. § 431.966 - Disclosure of information Patient data submitted as part of the prescription monitoring program is considered protected health information and is not subject to disclosure as...