Senate Community Affairs Committees

REPORT ON ACCESS TO MEDICAL RECORDS

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CHAPTER 1 - INTRODUCTION

Terms of reference

1.1 On 13 December 1996 an amendment was moved in the Senate to the Health Insurance Amendment Bill (No. 2) 1996 relating to patient access to medical records. The amendment was negatived and the matter was referred immediately to the Community Affairs References Committee by the Senate on 14 December 1997, for inquiry and report on or before 25 March 1997. The reporting date was subsequently extended to 26 June 1997.

1.2 The inquiry, based on amendments proposed by Senator Neal, related to patient access to medical records, with particular reference to the appropriate scope of Commonwealth legislation in this area and, in particular, the need for provisions including but not limited to, the areas of:

    (a) the scope of the application of the scheme;

    (b) mechanisms to protect the interests of patients and third parties against potentially harmful disclosures;

    appropriate sanctions;

    (c) mechanisms for decision-making and review of decisions;

    (d) provision for parliamentary scrutiny and oversight of the arrangements; and

    (e) exemptions that should be applied to the scheme.

     

Background to the inquiry

1.3 Patients have rights of access to their medical records held by government agencies and public health services under Commonwealth Freedom of Information (FOI) legislation, and under certain State legislation. [1] For example, in New South Wales, patients in private hospitals, nursing homes and day procedures centres have similar rights to access and amend their records as those available to consumers in public health services under FOI. [2] Commonwealth and State FOI legislation does not apply to private hospital records or to doctors' records held in private rooms.

1.4 There is no legislative right of access to medical records which extends into the private health care sector. Lack of access rights outside the public health sector creates an anomalous situation in that health consumers receiving private treatment have no right of access to their information even though, in some instances, it is exactly the same type of information as is held in the public health sector. The Committee supports the view tendered in major submissions that there is no obvious basis for distinguishing between the public and private sectors when considering patient access to medical records. [3]

1.5 The amendment sought by Senator Neal is the first attempt to establish a scheme of national application creating a patient's right to medical records. The movement for legislative reform was accelerated by the High Court decision in Breen v Williams which confirmed that there is no common law right of access to medical records. [4] Gaudron and McHugh JJ stated that it was not possible for the High Court to `create either an unrestricted right of access to medical records, or a right of access, subject to exceptions. If a change is to be made, it must be made by the legislature'. [5] Dawson and Toohey JJ, and Brennan CJ concurred, stating:

    There is more than one view upon the matter and the choice between those views, if a choice is to be made, is appropriately for the legislature rather than a court. [6]

1.6 The need for law reform over access to medical records has long been acknowledged and advocacy groups have vigorously pursued the matter. The High Court decision of 1996 ignited a renewed call for legislative reform which would provide patients and health consumers with an automatic right of access to their medical records. The issue of access was raised as early as 1987 by the NSW Privacy Committee. The Health Issues Centre issued a report in 1993, The Power of Information: Health Providers, Consumers and Treatment Records, which recommended that Freedom of Information legislation in every jurisdiction should be extended to the private health sector, and that consumers should be given access to and if requested, copies of their records. [7]

1.7 In 1993, the federal Privacy Commission, had made a number of statements supportive on the issue of access to medical records indicating that, in his view, there was no logical reason for a distinction being drawn [in regard to access to medical and health records] between the public sector and the private sector. [8]

1.8 In 1995, the federal Privacy Commissioner, Mr Kevin O'Connor and Victorian Office of the Public Advocate produced a Discussion Paper, Consumer Access to Medical Records, which outlined the issues for and against more open access to personal medical records. [9]

1.9 There have been a number of public inquiries into the issue of law reform to provide consumers with access to their health records, and to protect the privacy of personal information in medical and other health records. [10] The most recent Commonwealth inquiry was conducted in 1995 by the Department of Human Services and Health. A recommendation for national law reform to provide people with access to their health records was made in the final report of the Review of Professional Indemnity Arrangements for Health Care Professionals: Compensation and Professional Indemnity in Health Care, (PIR), also referred to as the `Tito Report'. [11] PIR's Recommendation 44, in relation to access to medical records, stated:

    Following the determination of the case of Breen v. Williams and the completion of the work of the Australian Law Reform Commission-Administrative Review Council Freedom of Information Review, the PIR recommends that, if necessary, the Commonwealth ensure via legislation that patients have access to their own health care records held by doctors, other health care professionals and public and private health care facilities. The minimum requirement should be right of access to all records created after the commencement of the legislation and access to matters of fact, including test results, for records prior to the commencement of the legislation. [12]

 

Conduct of the inquiry

1.10 Following the Senate's referral of the matter of access to medical records to the Committee, submissions were invited from all parties involved with, or having a representative interest in access to medical records. Considerable interest was expressed in the inquiry with 60 submissions being received, including many from organisations and individuals who had previously made written submissions to the Professional Indemnity Review, and to a further review undertaken by the Public Interest Advocacy Centre (PIAC) [13] who conducted an inquiry in 1996, resulting in a report entitled, Whose Health Records? Attitudes to consumer access to their health records and the need for law reform. [14]

1.11 Copies of submissions of a non-confidential nature were published by the Committee in separate volumes. A listing of organisations and individuals who made a submission to the Committee's inquiry are listed in Appendix 1.

1.12 The Committee held two days of public hearings into the inquiry in Sydney and Canberra on 7 and 17 April respectively. Witnesses who gave evidence at the hearings are listed at Appendix 2. Further information was provided to the Committee in answer to questions taken on notice during the hearings.

1.13 In conducting the inquiry, the Committee focused upon a number of issues within the general terms of reference, including:

  • extension of the definition of a medical record;
  • benefits of access;
  • impediments to access, including the legal discovery process;
  • exemptions;
  • appeal and review processes, eg, tribunals;
  • transfer of records, storage of records;
  • costs associated with access;
  • identified individuals' rights to access;
  • privacy and confidentiality issues;
  • informed consent;
  • electronic records and electronic data transfer.

 

Acknowledgments

1.14 The Committee expresses it appreciation to those who made submissions, provided additional material, or gave evidence to the inquiry.

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FOOTNOTES

[1] Freedom of Information Act 1982 (Clth) ss 11, 41; Freedom of Information Act 1989 (NSW) ss 16, 31; Freedom of Information Act 1982 (VIC) ss 13, 33.

[2] Private Hospitals Regulation 1996 (NSW), Day Procedures Regulation 1996 (NSW), Nursing Homes Registration 1996 (NSW). The 1996 regulations supersede 1990 regulations of the same title.

[3] Submission No.54, p.9 (DHFS); see also Submission No. 25A, p. 4 (ALRC).

[4] High Court of Australia [1995-1996 186 CLR 71].

[5] ibid, p.115.

[6] ibid, p.99.

[7] The Power of Information: Health providers, Consumers and Treatment Records, Health Issues Centre, Melbourne, May 1993, Recommendations 1 & 2, p.25.

[8] Launch of the Health Issues Centre Report, 18 June 1993, p.2. Federal Privacy Commissioner, Mr Kevin O'Connor.

[9] Consumer Access to Medical Records: A Discussion Paper arising from “Private Lives?An initial investigation of Privacy and Disability issues”, Dr Meg Montague, October 1995.

[10] M. Allars, Report of the Inquiry into the Use of Pituitary Derived Hormones in Australia and Creutzfeldt-Jakob Disease, AGPS, 1994; Australian Law Reform Commission and Administrative Review Council, Freedom of Information, Discussion Paper, No. 59, May 1995; Open Government: a review of the Commonwealth Freedom of Information Act 1982, ALRC Report No. 77; ARC Report No. 40, 31 December 1995.

[11] Review of Professional Indemnity Arrangements for Health Care Professionals: Compensation and Professional Indemnity in Health Care, Final Report, Department of Human Services and Health, AGPS, Canberra, 1995. Chair, Fiona Tito.

[12] Recommendation 44, ibid, p.xxii.

[13] Public Interest Advocacy Centre (PIAC), is an independent, non profit legal and policy centre located in Sydney. PIAC receives funding from the Law Foundation of NSW, the Commonwealth/State Community Legal Centres funding program and the NSW Legal Aid Commission.

[14] Whose Health Records: Attitudes to consumer access to their health records and the need for law reform, Amanda Cornwall, Public Interest Advocacy Centre, October 1996.