Confidential information can be disclosed for reasons other than the direct care of the patient. This topic looks at disclosure for reasons of education, research, monitoring and epidemiology, public health surveillance, clinical audit, administration and planning, insurance and employment.

 

Relevant HPCSA Guidelines

Booklet 5, paragraph 8

Contents

  • Introduction
  • Monitoring public health and the safety of medicines and devices
  • Medical research
  • Social care
  • Health services for experimental or research purposes


Discussion

Introduction

Public health information is collected primarily to provide care for individual patients. However, patient data are also necessary for a variety of other functions related to the provision of health care. This section focuses on disclosures which benefit patients indirectly.

Monitoring public health and the safety of medicines and devices

The guidelines provide that professional organisations and government regulatory bodies that monitor the public health or the safety of medicines or devices rely on information from patients’ records for their effectiveness in safeguarding public health. Specific reference is made to notifiable conditions. Practitioners are required to cooperate by providing relevant information wherever possible. The notification of some communicable diseases is required by law. In other cases, practitioners should provide information in anomised form when that would be sufficient.

Unless there is specific legal provision to the contrary, written consent should be obtained to use or disclose identifiable information with purposes associated with healthcare other than direct provision of care to the patients. The guidelines provide that, where personal information is needed, practitioners should seek express consent before disclosing information, whenever that is practicable.

The general rule is that a patient’s express written consent should be obtained before disclosing identifiable information for such purposes. The practitioner must also be satisfied that the likely benefit of the disclosure to the public and commitment to confidentiality of the organisation requesting the information. If there is little or no evident public benefit, then the information should not be disclosed without the written consent of the patient.

It is advised that anonomised data should be used wherever possible for any secondary purpose. In addition, the use of the information should be disclosed to the patient.

Medical Research

The use of healthcare data for medical research is an evolving area of practice which a number of ethical dilemmas are brought into sharp focus. Lively debates occurs within this particular secondary use of information, which takes places against a backdrop of rapid advances in computer technology, organisation of healthcare settings and political pressure.

The guidelines[1] provides that where research projects depend on using identifiable information or samples and it is not practicable to contact patients to seek their consent, the data should be anonymised and this should be drawn to the attention of the applicable research ethics committee.

In this provision is the concept where identifiable information or samples is required, it is necessary to obtain the consent of the patients. This consent must be in accordance with the provisions of Section 14(2)(a) of the National Health Act.

Medical research is therefore recognised as a justifiable reason for a public interest disclosure with the consent of the patient. Should it not be possible to obtain that consent, then only anonomised data can be used.

Social Care

When patients with capacity are receiving care from social services, confidential information can be shared on the basis of statutory authorisation in terms of the National Health Act[2], provided that the information is:

  1. Provided by a health worker or health care provider that has access to the health records of a user.
  2. Personal information is provided as is necessary for any legitimate purpose within the ordinary course and scope of the provider’s duties where such access or disclosure is in the interest of the user.

It is advisable that patients are aware that health and social care providers are working together in order to provide for their care. Patients should therefore be advised if information is to be shared with other organisations providing care, such as social services. It is always better to obtain express consent where it is possible to do so. Patients have the right to object to the information being shared, which will have a bearing on the requirement that the disclosure must be “in the interests of the user”. Should such an objection occur, then patients should be advised of the possible detrimental effects to their care should they sustain the objection.

Should patients not have capacity to consent to the disclosure due to immaturity, illness or mental incapacity, then it is good practice to nonetheless advise the patient that such disclosure will occur before it is made. If the patient is agreeable to the disclosure, then a consideration must nonetheless be made as to whether the disclosure satisfies the requirements of section 15 of the National Health Act. The practitioner must therefore consider the disclosure is “necessary for any legitimate purpose within the ordinary course and scope of the practitioner’s duties” and whether the disclosure is in the interests of the patient.

Should a patient who does not have capacity to consent objects to the disclosure, the practitioner should attempt to persuade the patient to allow an appropriate person to be involved in the consultation.

If patients continued to oppose the disclosure and practitioners are convinced that the disclosure is necessary and in the patient’s interests, the practitioner may disclose relevant information to an appropriate person or authority. The guidelines provide that, in such cases, the practitioner must advise the patient before disclosing the information and must seek the consent of the person authorised to give consent in terms of the National Health Act[3].

Where a patient has fluctuating capacity or is likely to lose capacity, early discussion is advised and can help to avoid disclosures that patients will object to.

Public health surveyors and research relies on vast quantities of data. Where requested, anonomised data should be used wherever possible. It is always preferable to seek the consent of the patient if possible, even where there is a statutory requirement to disclose the information, unless there are reasons not to seek consent.

Health services for experimental or research purposes

Before a health establishment provides a health service for research purposes the patient must be informed in the prescribed manner in terms of the National Health Act[4] that the health service is for experimental or research purposes or part of an experimental or research project. The prior written authorisation for the provision of the health service in question is required before the health service can be provided[5].


[1]Booklet 5, paragraph 9.1.3

[2] Section 15

[3] Section 7

[4] Section 11

[5] Section 11(2)