Data Management Principles - Wildlife Disease Surveillance Data

Purpose

This document outlines how Wildlife Health Australia (WHA) manages the privacy and confidentiality of wildlife disease surveillance data submitted to WHA. These principles are also relevant to guide all submitters of data to WHA, including all WHA surveillance partners and their agencies.

Consultation and Review

This document, and the WHA Confidentiality Principles, are prepared by Wildlife Health Australia and reviewed in consultation with the state and territory CVO1 appointed Wildlife Health Australia Coordinators (Primary WHA Coordinators) and reviewed regularly and as required. Following each review, this document and the WHA Confidentiality Principles are provided to the Animal Health Committee (AHC) for information, as part of regular WHA reporting.

1 CVO: Chief Veterinary Officer

Distribution

The document will be provided to all submitters of data to the national electronic Wildlife Health Information System (eWHIS) and as appropriate to submitters of wildlife health data to WHA through other avenues.

Background

Wildlife Health Australia (previously the Australian Wildlife Health Network) manages national wildlife disease surveillance data under the imprimatur of the AHC and the Primary Industries Standing Committee. The core business activity of WHA is collaboration with key stakeholders to coordinate wildlife health surveillance and collect information Australia-wide into a national information system, with emphasis on supporting Australia’s environment, biodiversity, animal and human health, trade and tourism. As part of this activity, WHA administers the national wildlife health information system (eWHIS), which is part of Australia’s National Animal Health Information System. WHA activities are driven by the increasing risk of emergency and emerging diseases with wildlife as part of their ecology.

WHA has responsibility for national wildlife disease surveillance programs and must recognise and protect the interests of individual submitters of data, jurisdictions and the nation as a whole. WHA has successfully met this requirement and maintained national information in a secure environment for over 15 years. To ensure this, WHA has established and maintained good working relationships with: the Australian Government Department of Agriculture and Water Resources; AHC; Primary WHA Coordinators; Australian, state and territory government departments of agriculture, health and environment; veterinarians at zoo based wildlife hospitals, wildlife veterinary clinics, university clinics and pathology departments; university researchers; and other stakeholders who provide data to WHA.

WHA’s data management is focused on protection of national, jurisdictional and individual interests, particularly where Australia's environment, biodiversity, animal and human health, trade and tourism may be impacted. The purpose of WHA data management is to improve information sharing between stakeholders whilst recognising the need for care in doing so. The business rules described in this document and processes put in place have served WHA well over the past 15 years in facilitating sharing of information, and the experience and corporate knowledge of WHA staff ensure that information is managed appropriately.

Management of Wildlife Disease Surveillance Data

1.  Submission of data

a. 

WHA collects summary surveillance data (de-identified for protection of privacy) on diseases with wildlife as part of their ecology that may impact on Australia’s agriculture, trade, human health or biodiversity. Surveillance data also includes information pertaining to reports on antimicrobial resistance as well as disease attributable to environmental and/or toxicity events.

b.

General wildlife disease surveillance data is submitted regularly by Primary WHA Coordinators, veterinarians at zoo based wildlife hospitals and wildlife veterinary clinics, university clinics and pathology departments ("WHA surveillance partners"). Data is also provided on an ad hoc basis by other submitters such as university researchers and private veterinarians, in consultation with the Primary WHA Coordinator where necessary. 

c.

Data is submitted by direct entry into eWHIS, a password protected, encrypted and secure web-enabled database. The ability of an eWHIS user to view an individual record in eWHIS is dependent on the confidentiality level assigned to that record and the access level assigned to the user (see ‘Privacy and confidentiality’ below). Data may also be submitted on an ad hoc basis via other methods e.g. email or phone.

d. Data targeted for capture in eWHIS include information from: ‘interesting or unusual’ events (that may signal an emerging disease), mass mortality events, bat viral disease testing, arbovirus testing, and testing for World Animal Health Organisation (OIE) list diseases. Zoonotic diseases with potential public health involvement are also reported. Data relating to nationally important disease issues are also collected, for example from cases of antimicrobial resistance, environmental contamination and toxicities and salmonellosis.

e. Where there is a genuine suspicion or confirmation of a notifiable animal disease, all persons have a legal responsibility to notify their state or territory animal health authority. The requirement to report notifiable diseases is contained in individual state and territory legislation. Call the Emergency Animal Disease Watch Hotline on 1800 675 888. Reporting data into eWHIS does NOT constitute notification.
   
f.

Policies for communication of data generated by targeted wildlife surveillance programs (e.g. the National Avian Influenza Wild Bird Surveillance Program) will be agreed by the dedicated steering group or committee for each program and will be in line with these guidelines and the WHA Confidentiality Principles.

2.  Privacy and confidentiality

a. 

WHA is an association incorporated under the Incorporated Associations Act in NSW. As such it is required to manage any private information as required by the Australian Privacy Principles in the Privacy Act 1988.

b.

Prior to accessing information in eWHIS, all WHA surveillance partners are required to agree to the WHA Confidentiality Principles, which include the requirement to de-identify data to avoid naming individual members of the public or small communities, or providing any information that may compromise them. 

c.

Confidentiality and level of access to individual records is managed by the data submitter, the Primary WHA Coordinator for the jurisdiction and WHA staff (see also ‘Moderation’ below).

3.  Ownership of information

a. 

Ownership of the information provided to WHA remains with the individual or organisation submitting this information.

b.

All users of eWHIS are required to agree to the WHA Confidentiality Principles prior to being granted access. In addition, a data submitter can restrict access of others to data they enter into eWHIS using the ‘Confidentiality’ setting for the record. 

4.  Moderation

a. 

Information entered into eWHIS is moderated by WHA staff, in consultation with the data submitter where needed. Moderation undertaken by WHA staff can include quality assurance, de-identification for privacy purposes and assessment of the event for any sensitivity within a national context.

b.

If there is any concern as to the sensitivity and classification of information, the submitter is advised, then the information is referred by WHA to the Primary WHA Coordinator for further consideration and, for concerns within a national context, to Australia’s OIE Focal Point for Wildlife2 and the Australian Government Department of Agriculture and Water Resources. If considered appropriate, the confidentiality level of the record may be increased by WHA staff whilst an assessment is being made.

2 Australia's World Organisation for Animal Health (OIE) Focal Point for Wildlife sits within WHA and provides support to Australia's OIE Delegate on matters relating to wildlife.

5.  Use and approval of data

a. 

Data provided to WHA is used to fulfil Australia’s national and international reporting obligations including Australia’s return for wildlife and general reporting for the OIE, and to assist in identifying risk and improving decision making and policy in the area of wildlife health. Information is also used where appropriate to support responses to outbreaks of national emergency diseases of animals or people. All Information is de-identified and moderated as described above.

b.

Summary reports using aggregated data are published in the Animal Health Surveillance Quarterly and Animal Health in Australia publications to support the National Animal Health Information System (NAHIS). More detailed (non-summary) reports for inclusion in these publications will only be published with appropriate permission (see e. below). 

c.

As needed, reports are generated for the information of the AHC, Australian, state and territory government departments of health, environment and agricultural / biosecurity agencies, the Australian Pesticides and Veterinary Medicines Authority (APVMA), or other agencies or organisations as deemed appropriate by WHA. The Australian Government Department of Agriculture and Water Resources, as the lead agency with responsibility for Australia’s animal health status, is consulted as needed on the generation and distribution of additional reports.

d. The majority of data released to agencies and organisations, as outlined above (5c.) consist of summary, aggregated data. Reports are labelled where appropriate with: “The following information is CONFIDENTIAL and is intended for use only with respect to the management of diseases with wildlife as part of their ecology that may impact upon Australia’s trade, human health and/or biodiversity”.

e. WHA will not publish information without the permission and approval of the data submitter and, where appropriate, the Primary WHA Coordinator. If deemed necessary, reports will also be submitted for review by Australia’s OIE Focal Point for Wildlife in consultation with the Australian Government Department of Agriculture and Water Resources.

f.
WHA occasionally receives requests for data, for example for use in research projects, a disease risk assessment or a publication. WHA has a process for managing these requests, which includes completion of a data request form by the applicant, obtaining approval(s) for release of the data from the data submitter(s) or owner(s), consideration of appropriate acknowledgement, and requesting a copy of the report, thesis or paper from the applicant before publication, where appropriate.