Health Research and Privacy by rt3463df

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									 Approaches to Information
Protection in Atlantic Region
     Health Research
                Elaine Gibson
             Health Law Institute
             Dalhousie University


  Presentation for the Atlantic Symposium on
     Privacy in Health Services and Policy
             Research April 20/09
               Developments
   Hospitals Acts
   Public sector legislation
   Tri-Council Policy Statement
   Federal private commercial sector
    legislation
   Provincial private sector legislative models
            Hospitals Act N.S.
   Patient information confidential
   Share only with consent or under
    exceptions
   Two of the exceptions:
   (a) a person on the staff of the hospital for
    hospital or medical purposes;
   (b) the qualified medical practitioner of the
    person concerned designated by the person as
    his physician;…
  Freedom of Information and
Protection of Privacy Act – P.E.I.
 Public sector
 Basic research provisions (not in N.B.):
     Need  identifiable info (or approval of
      Commissioner)
     Record linkage not harmful and in public
      interest
     Adequate security measures

     Agreement to comply
                Up to 1998:

   No FOIPOP in PEI, Nfld.
   No specific protections for research in N.B.
   No protections for research conducted
    outside public sector (e.g. university,
    perhaps hospital)
     Tri-Council Policy Statement: Ethical
    Conduct for Research Involving Humans
                    (1998)

   Three major federal research funding
    agencies
   Ethics model - aspirational
   Teeth: threat of withdrawal of funding to
    universities if non-compliant
     Tri-Council Policy Statement -
               Problems

   Information provisions vague
   Conformity variable across country
   Not a strict enforcement model
   Requirement for informed consent unclear
   Presently under review
    Personal Information Protection and
     Electronic Documents Act (2001)

   Federal private sector information
    legislation
   Includes research provisions
   Applies only to commercial activity
   Interpretation: Physicians and health care
    providers in non-hospital settings
    commercial; hospitals not
        Private Sector - Models
   General (B.C., Que.)
   Specific to health information (Nfld., N.S.,
    N.B.)
   Specific to electronic patient records (B.C.)
   Specific to health information centres
    (Nfld.)
   Specific to research (Nfld.)
    Health Information Legislation

   Tends to incorporate Tri-Council Policy
    Statement, with more specifics and
    enhancements
   Consent is basis for use of info for
    research, followed by exceptions
           Data Linkage

 Combined data sets of de-identified
  information can lead to identification of
  individuals
 Sensitivity of data created

 Function creep
       N.L. health department
    apologizes for privacy breach

   Personal health information, including names, of
    43 low-income drug program members was sent
    by Dept. of Health to x-wave, a division of Bell
    Aliant
   X-wave’s employee sent it back
   Same info was sent a second time to x-wave


                CBC News August 24, 2007
Questions/Comments

  Elaine.gibson@dal.ca

								
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