Privacy Bill
Thursday, August 31, 2000
The Australian Dental Association's response to the Senate Legal and Constitutional Legislation Committee on the inclusion of health information in the Privacy Bill.
31 August 2000
The Secretary
Senate Legal and Constitutional
Legislation Committee
Suite S1.108
Parliament House
CANBERRA ACT 2600
Fax: 02 6277 5794
Dear Sir/Madam
The Australian Dental Association (ADA) wishes to provide the following comments on this important matter. The ADA is a professional association of dentists, the aims of which are to promote the art and science of dentistry and the health of the community. Its membership is approximately 8,200, which represents well over 90% of active practising dentists. Most dental services are provided through private practice, supplemented by limited State-funded public dental services for the under-privileged. Issues relating to the security of personal health information as they affect the private sector may thus be represented through these views.
In making this submission, the ADA will confine itself to the particular ramifications of the Bill as they affect the maintenance of dental health records that have a direct correlation with high standards of patient care. The submission, therefore, will be centred on the interests of the community in this matter.
1. Special considerations for the health record
The inclusion of health information in a Bill dealing with privacy issues has been acknowledged as introducing additional complexity to this Bill. The Privacy Commissioner’s recommendation that health information be included has been adopted. However, it is essential that, in taking this step, the unique problems associated with the recording of health information and the subsequent protection of the details of this information must be recognised.
It is noted that the Bill makes a distinction between the use of personal information and the use of sensitive information, such as health information. Dental records must be considered in the same light as medical records and will contain the same sort of information. Dentists take a medical history from their patients to facilitate diagnosis and treatment planning. This will include recording of details of general health status, past medical treatment and current medications. Standard history taking often includes relevant information additional to the mere recording of details about physical or mental health. Information on social history is frequently required and is relevant to the broad concept of “health” and its assessment and management. For example, data on living conditions, consumption of alcohol or tobacco are essential. The information collected should be comprehensive and should include all matters relevant to the person’s health including information about emotional health or disabilities.
2. Access and confidentiality
The recording of a patient’s history is an essential element of diagnosis and must not be compromised. The difficulty is to preserve a balance between appropriate access to this information on the one hand and the preservation of confidentiality of this information on the other. Furthermore, there are special considerations to be taken into account with respect to the effects of access to this information. Health professionals must be able to be confident that their recording of clinical information to assist in diagnosis and treatment planning will not be compromised by unfettered access to this information, even by the patients themselves in some special circumstances. This would have the effect of reducing the quality of care.
Where an organisation holds personal health information about an individual, it should provide the individual with full access to the information on request unless the organisation can provide valid reasons for denial or full access.
Whilst there should be very limited circumstances when an individual could be denied access to their own private health information, there are no doubt some circumstances where this would not be in the interest of that individual nor, indeed, in the public interest. For example, information about the patient’s attitude to or compliance with his/her treatment may be recorded in order that the provider could explore ways around this problem. If this assessment was to be revealed to the patient while treatment was in progress it might well prejudice the outcome of this treatment. There needs to be a balance between individual wishes in this case and the effects that the access might have on the health of the individual and the management of their health care. Furthermore, if it were to lead to deterioration in the quality of the recording of health information, it would lead to a lowering of health care standards in general and would have a spin-off effect on other individuals.
• access to a record might provide distress to the subject of the information if that information contains material which could offend the sensibilities of the individual. Some details of the assessments by the clinician may sometimes be concealed from the individual in that individual’s own health interests. This is not to condone any concealment for any purpose other than the interests of the patient with respect to their health management and treatment outcome. Assessment and recording of patient attitudes to their health and their self images, if revealed at certain stages in the management of their health care, could prejudice this care.
• some information in health records may have been provided, in confidence, by others and, unless access to it is restricted, the consequence is likely to be that this information would be filed separately rather than making up part of the personal health record. This would not lead to satisfactory record maintenance and would not be in the public interest.
• it is difficult for an individual without the necessary training to understand the health record. Unfettered access could lead to unreasonable expectations regarding the prognosis of the individual’s health situation.
• unless access by the individual is able to be restricted, misinterpretations of the significance of the findings in the record might lead to unsupportable litigation. This would result in increased health costs for the community, even if unsuccessful, and such access would not be in the public interest.
The ADA believes that there should be a distinction drawn between factual information and opinions, both of which are expressed in the personal health record. Factual material could be released to the individual, providing it does not prejudice that individual’s health or the progress of their health management, as outlined in earlier discussion in this submission. On the other hand, opinions are often given in some confidence and this confidentiality must be preserved.
In the High Court decision Breen v Williams, the Court unanimously held that, under the common law, a patient does not have the right of access to their medical records as these are deemed to be the intellectual property of the health practitioner. The Bill would appear to be in conflict with this decision and it is inappropriate that it should be in conflict with the common law in this matter. In his Second Reading speech, the Attorney General stated that “access may be denied if this denial is required or authorised by law”. However, the Bill should not be written so as to present such a conflict in the first place.
There are statutory requirements for the maintenance and retention of health records in the various States and Territories. It is important that Commonwealth law recognises these requirements which are in keeping with the principle of “ownership” of the records by the health provider.
3. State and Federal legislation
We are cognisant of the fact that the Victorian Government has recently introduced a Health Records Bill that is currently in Draft form. In NSW, the Minister for Health has released a report into health information and privacy issues and has requested the
NSW Privacy Commissioner to chair an advisory committee on privacy and health information.
It is noted that the Bill provides that State and Territory laws that make provision for the collection, holding, use, correction, disclosure or transfer of personal information will continue to operate to the extent that they are not inconsistent with the proposed Commonwealth legislation.
4. Cost issues
The Bill provides for special exemptions for small businesses but these exemptions do not apply to entities that provide a health service. The Government’s rationale for these exemptions is stated as being to reduce the regulatory burden of compliance costs. These same compliance costs will have an impact on the practices of health providers and should also be recognised. The ADA submits that it is important to recognise that there are costs involved in providing access to health information and the practitioner must be able to be recompensed for reasonable and justifiable costs when requests for information are made.
5. Information sharing
According to the proposed section 13B, related bodies corporate may share personal information provided that they comply with the Nation Privacy Principles (NPPs) or a binding privacy code. The information shared must be used for the primary purpose for which it was originally held. However, this provision does not extend to sensitive information that includes health information.
Personal health information must be able to be shared between members of a treating team. The concept of a team approach to health care is well established and accepted by patients. There would be an assumption that, when collecting personal health information, it would be used only for the purpose of the health management of the individual. This would encompass the access to this information by other members of the health team and the only concern would be if the information were to be accessed by others outside this particular group.
There is also a need for this material to be able to be forwarded to another practitioner to whom the patient is referred for either consultation or management. Thus, while the recorded information is collected by one practitioner from the patient with full consent of that patient, it should be understood that this information may be divulged to another practitioner who becomes involved in the care of the patient.
It is also appropriate for a practitioner to forward a copy of the patient’s record on to another practitioner to whom the patient has transferred. This enables the continuation of the patient management. It is necessary for the initial practitioner, in these cases, to retain the original of these records for medico-legal reasons, at least for the statutory period required under State or Territory law or the period which is required under professional indemnity arrangements.
It is not clear whether subclause 2.4 allows for provision to be made for access to the health record by members of the treating team, unless they are covered under 2.4 (b) as “carer”.
However, in examining the limitations on access to personal health information, it is important that the privacy of the individual is protected from inappropriate access by third parties. One example is the tendency for non-Government funding bodies, such as health insurance funds, to sign agreements permitting unfettered access to health records. We have serious reservations that this could go beyond the obtaining of information necessary to validate the provision of the service, the latter being a reasonable requirement.
6. Research and quality assurance
There is a need for the provisions to cover applications of data for research, including quality assurance or quality of care exercises. Normally, personal identification is unnecessary in research and quality assurance activities and such details are “cleansed” from the data. Nevertheless, there may be some cases where the identity of the subject can be established readily from the accompanying data and personal privacy is compromised, as a result. The issue here is one of public benefit. Both research and quality assurance are necessary elements for improving the health of the public. It is important that the research or quality assurance activities are related to the quality of care and are conducted by professional bodies or peer groups. NPP 2.1 (d) and NPP 10 make provision for compilation of health data for research and the monitoring of a health service and the incorporation of these Principles in the Bill should cater for these requirements generally.
7. Summary
The ADA submits that:
• the inclusion of health information in the Bill introduces a complexity which requires careful consideration
• there must be a balance between access to health records and the need to preserve a high standard of record keeping
• there will be occasions where unfettered access by a patient to their health record would have a deleterious effect on their health. The Bill should provide for restrictions on access to those parts of the health record which could prejudice the health or treatment of the patient in such cases
• access to the health record should not include access to opinions which are recorded to assist the health provider in maintaining familiarity with the case.
There should be a clear distinction drawn between the recording of these opinions and the substantive and factual health record which would be the subject of access
• the health record should remain as the intellectual property of the health provider
• requests for access to health records must be accompanied by payment of costs associated with this access
• restrictions imposed by the Bill on sharing of health information must not impinge on the overall health management by the treating team nor prevent legitimate pursuit of research and quality assurance
The special nature of the health record and any access to this information must be recognised in the Bill. Health information needs particular consideration because of its influence on the quality of care and because of medico-legal requirements.
The ADA makes this submission to the Committee and requests that it is given serious consideration in order to ensure that appropriate amendments can be made to the Draft Bill to reflect the requirements in relation to health information.
Yours sincerely
Robert J F Butler
Executive Director