Open Data Strategy 2013 2016

Department of Health Open Data Strategy 2013 2016 March 2013 Great state. Great opportunity.

Department of Health Open Data Strategy 2013 2016 Published by the State of Queensland (Queensland Health), March, 2013 This document is licensed under a Creative Commons Attribution 3.0 Australia license. To view a copy of this license, visit www.creativecommons.org/licenses/by/3.0/au State of Queensland (Queensland Health) [2013] You are free to copy, communicate and adapt the work, as long as you attribute the State of Queensland (Queensland Health). For more information contact: Office of the Director-General, Queensland Health, GPO Box 48, Brisbane QLD 4001, email opendata@health.qld.gov.au, phone +61 7 3836 0953 An electronic version of this document is available at http://www.health.qld.gov.au/performance/default.asp Preferred citation: Department of Health Open Data Strategy 2013 2016, Queensland Government, Brisbane. 2

Open Data Strategy 2013 2016 Contents 1. Executive summary...4 2. Introduction........................................................................................................................................ 5......2.1. Purpose and audience... 5..... 2.2. Background... 5..... 2.3. Scope...............................................................................................................................................5..... 2.4. Definition of data... 5..... 2.5. Strategy review period... 5 3. Strategic overview...6......3.1. Open data principles... 6..... 3.2. Open data goals and objectives... 6..... 3.3. Types of data held... 7..... 3.4. Overarching data evaluation process... 7..... 3.5. Release strategy................................................................................................................................8..... 3.6. Governance and compliance... 10 4. Data for release... 11 5. Future open data program...........................................................................................................11 Appendix A open data roadmap... 13 Appendix B maturity of data release.................................................................................................................. 18 Appendix C glossary... 19 Appendix D supplementary information... 22 3

1. Executive summary On 9 October 2012, the Premier of Queensland announced an open data revolution for the Queensland Government with the aim of releasing as much government data as possible to encourage other sectors to develop innovative new services and solutions. The purpose of the Department of Health Open Data Strategy 2013 2016 is to outline the plan of action for the Department of Health to achieve the Queensland Government s commitment to this open data revolution. The policy principles that underpin the strategy are that data published on the open data website, available from www.data.qld.gov.au will be: available for open use available for free available in accessible formats and easy to find released within set standards and accountabilities. In this context, data refer to numbers, letters, or pixels expressed in any form. Some data may be in a raw (or basic) form that has not been analysed or arranged into a meaningful form. However, some data are meaningful and can be read and understood in their raw (or basic) form. Data collections are meaningful groups of data and data sets are files of specific data from data collections. The department collects a range of data including, but not limited to, clinical conditions, health care provision and activity, hospital and service performance, public health and population health initiatives, program administration, human resources, financial performance, capital delivery and workplace incidents. The focus of this strategy is the release of data collected on departmental enterprise systems and held in the course of performing departmental business. The department does not intend to generate, collect or hold new or additional data for the Open Data Initiative. This strategy does not cover data collections/data sets collected by Hospital and Health Services for their specific requirements that are outside the scope of the Queensland public health system-wide data collections/data sets managed by the department. The strategy outlines the departmental approach to evaluating existing data collections for release, with exceptions to appropriately protect data that are restricted for reasons of privacy, public safety, security, commercial confidentiality or compliance with the law, such as an individual s health record. All existing departmental data collections are considered to be in scope for evaluation for open data. The scope for evaluation includes Queensland public health system-wide data collections where data are provided by Hospital and Health Services and managed by the department, unless the data are restricted. Data that are restricted for reasons of privacy, public safety, security, commercial confidentiality or compliance with the law are not in scope, including health records and individual employee records. The department has been actively publishing a range of data for many years together with a list of data collections. While data sources are listed, actual data sets will only be released where the department is the owner or custodian of the data and where the data are not restricted as outlined above. By March 2014, a significant percentage of data sets will be evaluated for release and released mostly with open licenses. However, some data collections, such as health records and personal employee records, will not be released under open data for reasons of privacy, public safety, security, commercial confidentiality and/or compliance with the law. Data sets cannot be guaranteed in perpetuity, nor can they be guaranteed to have 24x7 availability. Whilst every care will be taken to ensure the quality and veracity of data provided, the department does not accept any liability for the data provided, or for loss or damages incurred as a result of reliance upon the data. The Queensland Government Disclaimer, available from https://www.qld.gov.au/legal/disclaimer/, applies to all data that are released as open data. Requests for additional data or analysis of data beyond the published data sets will be considered on a user pays basis, with terms to be negotiated by the relevant parties. Licensing of data will use the most open levels of Creative Commons license appropriate (e.g. CC By (attribution), which allows for free use, reuse, and redistribution of the data subject to crediting the department as the original source). The department has already achieved a number of short-term objectives under the Open Data Initiative. Further medium and long-term objectives are also identified in this strategy. 4

Open Data Strategy 2013 2016 2. Introduction 2.1 Purpose and audience This strategy outlines the plan of action, including a roadmap, for department to achieve the Queensland Government s commitment to the open data revolution of making departmental data available online wherever appropriate. The strategy is intended for use by: Queensland Government agencies, statutory bodies and commercialised units data custodians and other staff involved in managing and releasing data sets externally other jurisdictions and the Australian Government application developers business and industry tertiary institutions researchers non-government organisations any other interested parties including members of the community. 2.2 Background On 9 October 2012, the Premier of Queensland announced an open data revolution for the Queensland Government with the aim of releasing as much government data as possible to encourage the private sector to develop innovative new services and solutions for the state. Internationally, many jurisdictions at all levels of government are already undertaking open data initiatives with open data portals established in more than 30 countries, and about 600-700 cities or states. Examples include New York City https://nycopendata. socrata.com; the United States of America www.data. gov, and the United Kingdom http://data.gov.uk. Australian examples include the Australian Government www.data.gov.au; Victoria www.data.vic.gov.au; New South Wales www.data.nsw.gov.au; the Australian Capital Territory www.data.act.gov.au and Brisbane City Council www.data.brisbane.qld.gov.au This international trend to release data reflects the reality that data are becoming a major currency for modern society. The release of open data can drive innovation, growth and job creation by the private sector. The department has been actively publishing performance data for many years, thereby contributing to improved transparency and accountability and fulfilling the release of public sector information as required under the Right to Information Act 2009. 2.3 Scope All existing departmental data collections are considered to be in scope for evaluation for open data. The scope for evaluation includes Queensland public health system-wide data collections where data are provided by Hospital and Health Services and managed by the department, unless the data are restricted. Data that are restricted for reasons of privacy, public safety, security, commercial confidentiality or compliance with the law are not in scope, including health records and individual employee records. This strategy does not cover data collections/data sets collected by Hospital and Health Services for their specific requirements that are outside the Queensland public health system-wide data collections/data sets managed by the department. 2.4 Definition of data In the context of the strategy, data refer to numbers, letters, or pixels expressed in any form. Some data may be in a raw (or basic) form which has not been analysed or arranged into a meaningful form, although some data are meaningful and can be read and understood in their raw (or basic) form. When data are analysed, processed, organised, structured, or presented in a given context so as to make them meaningful, data become information. Data collections are meaningful groups of data and data sets are files of specific data from data collections. For the purpose of the Open Data Portal, data is described as machine readable data such as: CSV Comma Separated Values XLS Microsoft Excel Spreadsheet XML extensible Markup Language Data is not PDF files, annual reports, briefs etc. 2.5 Strategy review period This strategy is a four year forward plan for the department to deliver the Open Data Initiative. This strategy will be reviewed annually. 5

3. Strategic overview 3.1 Open data principles The policy principles that underpin the strategy are: Government data will be available for open use published data will be made openly available under flexible licenses wherever appropriate, allowing for reuse by the public including by business, researchers and individuals. Government data will be available free published data will be made available free in future, except if the charge is statutory or if cost recovery has a clear net benefit for the Queensland community and has been approved by Cabinet or the Cabinet Budget Review Committee. Government data will be in accessible formats and easy to find published data will be easily discoverable through www.data.qld.gov.au in accessible formats that promote their reuse. Government data will be released within set standards and accountabilities published data will be made available in a timely and relevant manner unless they are restricted for reasons of privacy, public safety, security, commercial confidentiality or compliance with the law. The Department of Health will be accountable for the release of data in accordance with set standards. 3.2 Open data goals and objectives It is anticipated that the efficiencies from open data will benefit: government, by allowing third parties to add value to data sets in ways that are not the core business of government and by providing valuable feedback to improve government services and processes. Data release will also build increased transparency and public trust in government processes. the community, business sectors and information and communication technology (ICT) industry, by providing access to life- and business-enhancing data, which may be made more accessible via applications and programs. While delivering tangible benefits to these sectors, many of these applications and programs also add value back to services (such as healthcare), drive nation-wide innovation and boost productivity. the health system, enabling it to remain affordable, sustainable and continually improve. The short, medium and long-term objectives for open data within the department are aligned with the generations of open data maturity in the Delib model (Appendix B Maturity of Data Release Generations), based on increasing sophistication and functionality of data release over time. Benefits The benefits of the open data initiative include: public access to better and more timely public services innovative and novel solutions developed to address problems more interactive and mobile access to government information government more accountable to the community. business access to data to allow the streamlining and improvement of business processes drive innovation and stimulate the economy more reliable information to underpin decisions less red tape through more efficient collection of data. public sector drive more efficient and effective delivery of public services delivers valuable feedback to improve government services and processes allows government to focus on the delivery of core public services builds increased transparency and public trust in government processes. 6

Open Data Strategy 2013 2016 Short-term objectives under the strategy The following objectives were completed by December 2012: release of selected data sets in original format from some existing data collections with default licensing, including caveats and sunset clauses where required and accompanied by data set specifications, data element standards or other metadata where relevant central email address and single telephone number for queries (opendata@health.qld.gov.au, telephone: +61 7 3234 1070) and commencement of processing of queries within two business days. Medium-term objectives under the strategy It is anticipated that the department will aim to achieve the following objectives by March 2014: approved processes established for classifying, authorising and releasing data sets in original format from existing data collections, accompanied by data set specifications, data element standards or other metadata where relevant whole-of-government data release checklist and metadata form customised and implemented a response time of two business days with an answer or timeframe for resolution of a query a significant percentage of data sets evaluated for release, and these data sets released mostly with open licenses. The form of released data would be informed by feedback from data users, an understanding of how the data is valued and used, and an analysis of benefits versus cost links to departmental data sets published on www.data.qld.gov.au towards achieving third generation site recognition 1 reviewed potential financial issues associated with moving to release of open data integration of requests for data with Right To Information (RTI) processes. Long-term objectives under the strategy In addition to achieving the above objectives, the department aims to achieve a number of objectives in the longer term (beyond March 2014): a published release schedule for in scope data sets identification of other data sets during development, for release under open data where possible fit-for-purpose data sets made available in original format with appropriate quality disclaimers standardised and transparent processes for the department to respond to queries about open data transparency and openness in government data increased by providing open access to key measurements benefit derived from third parties adding value to departmental data sets through innovative applications, services and solutions. 3.3 Types of data held The department collects a range of data including, but not limited to, clinical conditions, healthcare provision and activity data, hospital and service performance, public health and population health initiatives, program administration, human resources, financial performance, capital delivery and workplace incidents. 3.4 Overarching data evaluation process Open data principles support the release of useful, suitably licensed government data online for reuse by the broader community and private sector, with limited exceptions as previously noted. Many data sets are already available to the public. By March 2014, a significant percentage of in-scope data sets will be evaluated for release. The departmental data collections that are routinely collected and held will be used as the initial sources to be evaluated for open data and only unrestricted data sets will be released. The department will aim to release data in a timely way to preserve their value for public users. 1 Open Data Site Generation, Delib digital democracy, www.delib.net 7

3.5 Release strategy Agency roadmap A roadmap detailing timeframes for the department s release of data sets is included in Appendix A. Data quality and security The Open Data Initiative encourages agencies to provide information in a raw state (original format), with appropriate quality disclaimers. This approach is in contrast with past practices whereby data was released in a read only format. In some instances, this new approach under the strategy may result in some data being released for which the quality, accuracy, and completeness have not been verified. The department will comply with information management obligations including the Queensland Health Data Quality Framework, the Queensland Government Information Security Classification Framework and guidelines for publishing data sets 2. Only data that are classified as Public will be released. If a published data set inadvertently breaches privacy, public safety, security, commercial confidentiality or other legislation, the data custodian will have the data set removed immediately when this becomes known and notify opendata@health.qld.gov.au to determine any further remedial action required. The Queensland Government disclaimer 3 will apply to all data that are released as open data as follows: The materials available on or through this website are distributed by the Queensland Government as an information source only. To the maximum extent permitted by law, the State of Queensland makes no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through this website. Despite our best efforts, the State of Queensland makes no warranties that the materials available on or through this website are free of infection by computer viruses or other contamination, to the maximum extent permitted by law. The Queensland Government disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose. A user of this website who uses the links provided to another Queensland Government agency s website and material available on or through that other website acknowledges that the disclaimer and any terms of use, including license terms, set out on the other agency s website govern the use which may be made of that material. Personal privacy and patient confidentiality The department holds substantial data about members of the public and employees. Accordingly, the department needs to be a responsible custodian of personal information. Patient confidentiality in the department is strictly regulated. All employees are bound by the duty of confidentiality set out in the Hospital and Health Boards Act 2011 (HHB Act). The duty applies to confidential information, which is a defined term in the HHB Act and means any information that could identify someone who has received or is receiving a public sector health service. Confidential information must not be disclosed, unless an exception to the duty of confidentiality in the HHB Act applies. However, the duty of confidentiality does not apply to de-identified confidential information or statistical data sets which are not identifiable. There are additional legislative requirements that impose a duty of confidentiality regarding information provided to registries such as the Pap Smear Register through the Public Health Act 2005. Where information has been collected under authority of these provisions, it will be subject to any legal requirements relating to disclosure, as set out in the Public Health Act 2005. These will be considered by custodians for respective data collections. 2 Office of the Information Commissioner www.oic.qld.gov.au 3 https://www.qld.gov.au/legal/disclaimer/ 8

Open Data Strategy 2013 2016 The Information Privacy Act 2009 (IP Act) also regulates the collection and handling of personal information. Personal information is defined in the IP Act and is essentially any information, in any form, which is associated with and/or identifies an individual (full definition can be found in the glossary) The IP Act operates subject to the above confidentiality provisions (that is, the above confidentiality provisions prevail in respect of the confidentiality of patient information). Accordingly, the IP Act is generally the legislation that applies to the collection, handling and disclosure of employee information. As for confidential information above, the IP Act does not apply to deidentified personal information or statistical data sets which are not identifiable. Therefore, it is important that data sets are properly de-identified prior to disclosure to ensure that staff are not at risk of breaching their duty of confidentiality or the IP Act provisions. The Queensland Government Open Data Initiative promotes mechanisms to de-identify data sets so that they no longer constitute confidential information (for the purposes of the HHB Act) or personal information (for the purposes of the IP Act). For data to be considered to be de-identified, a person s identity must not be reasonably ascertainable. The protection of a person s identity can be addressed in part by: lowering the level of risk (e.g. by not releasing certain data sets) releasing the data in a manner where it would not constitute a privacy breach (e.g. by aggregating data) taking steps to limit the extent to which an individual could potentially be identified from the data (e.g. by selective removal of key pieces of information). These and other assessment measures will be included in the process of considering data sets for release under the Open Data Strategy. Further information on publishing data sets is available on the Office of the Information Commissioner Queensland website at: www.oic.qld.gov.au Public interest disclosures A person who makes a public interest disclosure pursuant to the Public Interest Disclosure Act 2010 (PIDA) has a range of statutory protections. Departmental or HHS employees involved in administering the PIDA have a statutory obligation not to disclose confidential information associated with a public interest disclosure. Confidential information includes information about the identity, occupation, residential or work address or whereabouts, of the discloser or the person about whom they made a disclosure. In addition it includes the information that was disclosed. Confidential information associated with a public interest disclosure must not be released except where provided for by the PIDA. This is unlikely to include Open Data Initiative data releases. Removing information that may identify an individual is not sufficient to satisfy the preservation of confidentiality requirements of the PIDA. For the Open Data Initiative, the preservation of confidentiality for public interest disclosures may be addressed in part by: lowering the level of risk for example, by not releasing certain data sets releasing the data in a manner that would not constitute a breach of confidentiality provisions for example, by aggregating general rather than specific information about discloser(s) or the disclosure(s) taking steps to prevent a discloser or their disclosure from being identified for example, sanitising the data by removing all identifying or specific information. Custodians must consider whether information recorded in data sets may amount to a public interest disclosure pursuant to the PIDA. Advice regarding disclosure of data associated with public interest disclosures may be sought from the Department of Health Ethical Standards Unit or relevant HHS officers. Licensing The Australian Government s Open Access and Licensing Framework (AusGOAL) recommends that data be made available in machine readable formats that can be read by freely available software and published in more than one open format to maximise their usefulness. 9

The Queensland Public Sector Intellectual Property Principles (IP Principles) govern the release of information including a recommended licensing framework (IP Framework). The IP Principles recommend the release of copyright public sector information for free and open reuse and adaptation under a Creative Commons license as a default position, unless there are specific reasons to restrict access. The department administers information in accordance with the IP Framework, the IP Principles and the AusGOAL framework. The department will aim to release data using the most open levels of Creative Commons license for example, CC By (attribution). This license allows others to distribute, remix and build upon a work, even commercially, as long as they credit the original creator/s (and any other nominated parties). In addition, such open licenses as CC By should be the default license where the department is collecting data from or through a third party. Revenue implications The Right to Information Act 2009 establishes, as a default position, that public sector information should be proactively released to the public unless it is contrary to the public interest to do so. The Premier has indicated that in general, data to be released through this initiative should be provided at no cost to encourage maximum use and reuse by the public. The department will review financial issues associated with moving to open data and address potential exception cases including where: 3.6 Governance and compliance Clear and concisely documented governance facilitates an understanding of accountability, decision-making and participation. 4 It enables processes to be better defined, thereby improving effectiveness, efficiency and communication. Accordingly, the department will develop defined and documented accountabilities for governance of open data release and management processes. Queensland Government governance of open data The department will comply with the whole-ofgovernment open data governance requirements through processes including: representation on the whole of-government Senior Officers Working Group to drive the identification and release of data by agencies and advise on policy liaison with Smart Service Queensland (hosting agency) regarding the uploading of data sets to the open data website www.data.qld.gov.au. Departmental governance of open data Governance of open data includes adherence to all existing legislative requirements and to departmental policies, including, but not limited to, those listed in the references section of this strategy. Governance of open data will include the following stakeholders and responsibilities: data are supplied to meet statutory duties for which fees are set by statute that may require legislative change data are supplied on a cost recovery basis with revenue used to maintain the data costs are recoverable for digitising data or modifying data at the user s request data are commercialised. Stakeholder Director-General Information Management Steering Committee Data custodians Responsibility Retain and appropriately delegate custodianship of data collections Approve data collections for their initial release Endorse approved data sets for release as open data in compliance with departmental release conditions. Approve subsequent releases of data sets approved for open data. 4 United Nations 2009, Governance, www.un.org/en/globalissues/governance/ 10

Open Data Strategy 2013 2016 4 Data for release The focus of this strategy is the release of data already collected on departmental enterprise systems and held in the course of performing departmental business. The priority will be on delivering access to the data sets identified in this plan. The department does not intend to generate, collect or hold new or additional data for the purpose of the Open Data Initiative. This strategy does not cover data collections/data sets collected by Hospital and Health Services for their specific requirements that are outside the scope of the Queensland public health system-wide data collections/data sets that are managed by the department. The department has already published a number of data sets on the www.data.qld.gov.au open data website. A significant percentage of in-scope data sets will be evaluated for release and released mostly with open licenses by March 2014. The department will, on an annual basis, review the information it holds to ensure that data which may currently not be able to be released due to particular reasons, and new information collected by the department, is formally considered for release. Feedback from customers and stakeholders will be used to inform this process. 5 Future open data program The department will publish data in a rolling program of public release. Managing queries from users Queries are welcome on a range of topics including: general questions about the published data enquiries to enable users to better understand the published data as they develop applications suggestions to correct, update or otherwise improve the published data. For general queries regarding the Open Data Initiative, users can lodge comments online or contact the 13QGOV telephone number (137 408). Smart Service Queensland will manage general queries received online or through the contact centre. However, there will be a number of queries that are data set-specific and will need to be referred to the department. The following mechanisms have been established for responding to specific queries: Email: opendata@health.qld.gov.au Telephone: +61 7 3234 1070 The department will aim to respond to queries within two business days, either with an answer or a timeframe for resolution. Service continuity Data sets cannot be guaranteed to be retained in perpetuity, nor can they be guaranteed to have 24x7 availability. Queensland State Archives advised that data available under the strategy are considered ephemeral copies of existing records and as such, do not need to be retained. The department does not warrant that data will remain available online or that uninterrupted access will be provided to data at any time. Where updated data become available, existing published data may be removed from the website or may be overwritten. The department may also, at its discretion, cease to collect certain data. Engagement with end users of data The Department of Health will continue to work towards improving access to information held by the department. The department aims to participate in and contribute to Queensland Government and other engagement to leverage opportunities for data release and use. End users of data are welcome to submit their comments about opportunities for greater engagement via email to opendata@health.qld.gov.au. The department will increase community engagement by: increasing awareness raising the profile of the Open Data Initiative through stakeholder engagement strategies promoting participation in the knowledge economy by making more data publicly available. 11

facilitating the exchange of ideas providing a forum for feedback and ideas about data sets making data traceable to its origin so users can further interrogate data increasing availability of data making data open by default releasing data within set standards and in accordance with legislative and other protections publishing data to the greatest level of granularity possible being responsive to feedback and suggestions for new data sets. Requests for additional data or analysis Any additional data provision or analysis beyond the published data sets will be considered on a user pays basis, with terms to be negotiated by the relevant parties. 12

Open Data Strategy 2013 2016 Appendix A open data roadmap The department has identified and published an initial grouping of data sources in line with this initiative. The following data sources will be evaluated for release as open data sets by the scheduled timeframes. Data source Aged Care Evaluation (ACE) Description Detailed client aged care assessment information including demographic information, medical diagnoses, care needs and carer information. Initial date for data release July 2013 Aged Care Information Management System (ACIMS) Alcohol, Tobacco and Other Drug Services (ATODS) Information BreastScreen Queensland Registry (BSQR) Clean Hand Application (CHA) Clinical Co-ordination and Retrieval Information System (CCRIS) Financial, resident care and resource management information recorded for Queensland Government residential aged care facilities to assist in the effective delivery and management of these services. The target population is older people living in Queensland Government residential aged care facilities. Collection of data on clients receiving treatment through Alcohol, Tobacco and Other Drug Services (ATODS). Information is collected from publicly funded government and non-government agencies that provide alcohol and/or drug treatment services. This includes community-based ambulatory services and outpatient services. This register provides a complete screening history of each woman screened by the BreastScreen Queensland Program. The register includes clinical information about every screening episode for each client covering the pathway of breast cancer screening and assessment. The data is used for quality assurance, performance monitoring including outcomes, quality measurement, assessing efficiency and effectiveness and evaluation. A central repository of Queensland public health facility level data from audits of hand hygiene compliance. CCRIS is a web-deployed Oracle clinical tracking application used by Retrieval Service Queensland (RSQ). RSQ staff coordinate patient rescue and retrieval services. The service uses fixed wing, rotary wing and road transport to transport critically ill or injured patients to definitive care in Queensland. CCRIS provides information about the type and location of patients requiring transport, escort required and the mode of transport. CCRIS records information related to the retrieval of adult patients. The QNets module of the CCRIS database specifically records information related to the retrieval of neonatal paediatrics and high-risk obstetric patients. July 2013 July 2014 March 2015 August 2013 March 2015 Comprehensive Electronic Geriatric Assessment (CEGA) A structured client assessment application to facilitate geriatrician review. July 2013 Consumer Integrated Mental Health Application (CIMHA) Consumer Perceptions of Care (CPOC) A consumer-centric clinical information system designed to support mental health clinicians in the provision of safer quality mental health services. The system supports the management of data for the Community Mental Health Care National Minimum Data Set and the National Outcomes and Casemix Collection. A statewide data collection completed by consumers of mental health inpatient and community services. The CPOC surveys consumers perceptions about specific areas of the care they receive within a specialised mental health service. CPOC assists in identifying service issues, both positive and negative, from the consumers perspective. This information is used to inform and support service evaluation and improvement initiatives. January 2014 February 2014 13

Data source Database of Research Activity Elective Surgery Data Collection Emergency Department Information System (EDIS) Enterprise Picture Archive Communication System (E-PACS) Financial and Residential Activity Collection (FRAC) Health Service Provider Directory (QFinder) Hospital and Health Care Services Activity Based Costing Collection Description The Database of Research Activity (DoRA) is a publicly accessible, searchable website. The database covers all Queensland Health human research. It is designed to facilitate greater collaboration and communication between researchers, improve patients access to research information, and raise awareness about the benefits of health and medical research. DoRA downloads research data from the Queensland ethics committees database (AU-RED) and presents it in a format to allow researchers and other interested public stakeholders to search for and view summary level information about research being conducted within Queensland Health facilities. Elective surgery is surgery that, in the opinion of the treating doctor, is needed but can be delayed for at least 24 hours. Patients who need elective surgery are placed on a register, or waiting list, so that their surgery can be planned. Information regarding elective surgery is collected centrally from 32 Queensland reporting hospitals. The information includes details about patients, their planned procedures, and dates of events that occur between when a patient is placed on the waiting list and when they are removed. The Elective Surgery Data Collection includes census data - information about patients who are waiting for elective surgery at a point in time, as well as removals data - information about patients who have received their surgery. The Department of Health publishes in relation to elective surgery activity and performance. Information is also shared from this Collection with national agencies so that performance can be compared across States and Territories. Hospital and Health Services and the Department of Health access the Elective Surgery Data Collection regularly to monitor and manage patients and their care, as well as to track performance improvement strategies. Enterprise application used to record details of patients who attend emergency departments. The information includes details about patients, their condition, and the timing of events that occur between when a patient arrives at the emergency department and when they depart. The Department of Health publishes information in relation to emergency department activity and performance. Information is also shared from this application with national agencies so that performance can be compared across states and territories. Hospital and Health Services and the Department of Health access EDIS regularly to monitor and manage patients and their care, and track performance improvement strategies. The E-PACS services 64 medical imaging sites across Queensland Health. The E- PACS is the system used for storage, distribution and review of medical images for these sites. A collection of data on public hospital establishments including expenditure, revenue and staffing levels and identification of specialised service indicators for hospitals for national and state reporting. A directory of health and community services and a key electronic resource for use within the 13HEALTH service, via the Queensland Health intranet site (QHEPS) and for the general public via the QFinder website. QFinder lists providers of a wide range of health and community services from the public, private and non-government sectors in Queensland. Information on the calculation of the cost of patient care which enables analysis and reporting of hospital costs, revenue, peer group and casemix costs data and other management information at both the product line and patient level across Queensland Health s major public hospitals. Information is collected on all patients admitted to hospital, emergency department presentations and outpatients occasions of service where an electronic record has been generated. Initial date for data release June 2013 Preliminary data published December 2012. Further data by December 2014. Preliminary data published December 2012. Further data by December 2014 August 2013 June 2014 August 2013 March 2014 14

Open Data Strategy 2013 2016 Data source Description Initial date for data release Infection Control Surveillance data (currently eicat, migrating to MultiPrac) Information System for Oral Health (ISOH) List of Approved Medicines (LAM) Database Management of Applications, Licenses and Permits (MAPLE) System Medical Aids Information System (MAIS) MedTrx Mental Health Activity Data Collection (MHADC) Mental Health Establishments Collection (MHEC) Monitoring of Drugs of Dependence (MODDS) Monthly Activity Collection (MAC) Notifiable Conditions System (NOCS) OrgTrx A central repository of healthcare-associated infection data comprising bloodstream, surgical site and multi-resistant organism infections, in addition to staff occupational exposures. This information system supports public oral health services delivered to eligible adult and child patients in public dental clinics and school oral health clinics/vans. The system is the electronic component of a patient s hardcopy oral health record and contains patient details, patient treatments, patient administration and patient access scheduling. The system is being developed to fully replace the hardcopy record and to capture all details of public oral services to eligible patients. List of Approved Medicines (LAM) is the official statewide formulary for medicines approved for use in all Queensland Health public hospitals and institutions. System to support the administration of licenses and permits for Environmental and Radiation Health. It incorporates information on food, drugs and poisons and other environmental health related complaints, investigations, prosecutions, infringements and legal opinions. Licensing capability currently operational. Complaints and regulatory compliance for Environmental Health will be implemented during 2013. MAIS supports the statewide administration of the Medical Aids Subsidy Scheme (MASS) by maintaining client, prescriber, supplier and product details. A centralised antimicrobial utilisation application providing antimicrobial use information from data imported from ipharmacy. A statewide collection of demographic, clinical and administrative information on outpatient, community, consultation liaison and outreach service contacts provided by specialised mental health services. MHADC is a key statewide resource for non-admitted mental health activity and is used for informing local and state decision making. MHADC is based on data collected within the Consumer Integrated Mental Health Application (CIMHA) and predecessor systems. A statewide collection of detailed information on the range, level and cost of services available in Queensland mental health establishments. Information is used as a basis for determining resource capacity including funding, staffing numbers and discipline mix, and broad activity indicators. MHEC is used to inform local and state decision making, support the development of performance indicators and address ad hoc requirements. Collection of information on the legislative and regulatory requirements, and prescription and use of controlled drugs. A collection of summary data on admitted and non-admitted patient activity and bed availability from public acute hospitals, public residential psychiatric hospitals and public nursing homes/hostels/independent living units. It also collects summary data on residents admitted to multipurpose health services and bed availability in multipurpose health services. Collection of statewide data on all notifiable conditions to monitor disease rates and identify outbreaks to inform disease response. A centralised application providing antimicrobial susceptibility trend and cumulative antibiogram information from data imported from AUSLAB. November 2013 Published December 2012 March 2015 March 2015 September 2013 March 2015 May 2014 August 2014 March 2015 Preliminary data published December 2012. Further data by December 2014. March 2015 March 2014 15

Data source Pathology Data Collection (AUSLAB) Perinatal Data Collection aka MidwivesÆ Collection Pharmaceutical Benefits Scheme (PBS) Program Collection Population health status data Prescription Workflow Tracking Information (ScripTraker) Primary Health Care Demographic, Clinical and Service Activity Qchild Queensland Cancer Registry (QCR) Queensland Health Pap Smear Register Description A collection of statewide public hospital pathology business critical, clinical information across the Queensland public health system. A collection of data on all births that occur in Queensland. The collection is a basic source of information for research into obstetrics and neonatal care; to provide information on neonatal morbidity and congenital anomalies. Information assists in planning of Queensland s health services and is used for national and state reporting. The collection includes information on antenatal care, the care provided during labour, and the delivery and care provided following birth. Extract of information which captures the reimbursement amounts claimed from the Commonwealth Government for Pharmaceutical Benefits Scheme (PBS) and chemotherapy items dispensed by Queensland Health Pharmacy Departments. Collection of information for the assessment of prevalence of population health indicators in the adult and child Queensland population. It is used for state and national reporting, and for policy and practice planning and evaluation. All information is collected by self report (adults) and proxy report (for children from parents/guardians). All information is collected by computer assisted telephone interview. All data collection and processing are the responsibility of the Preventive Health Unit, Chief Health Officer Branch. ScripTraker facilitates the monitoring and reporting of the status of a prescription, once it has been received by a public hospital/health service pharmacy department. It functions as a communication tool between ward staff and the pharmacy department, and has the capacity to provide information about daily prescription workloads. A primary health care Patient Information and Recall System (PIRS) known as FERRET for Rural Health Communities. It includes, but is not limited to, Aboriginal and Torres Strait Islander population groups, and supports standardised clinical practice and chronic disease management. This information collects all data relating to births in Queensland. This is used to match newborn hearing screening results to birth data to ensure >97% capture rates for the Healthy Hearing Program. Diagnostic audiology results, family support, medical assessment and early intervention information is also collected. The QCR is a statewide population-based registry that collects information about new cases of cancer and produces statistics about incidence, prevalence, survival and mortality. QCR is one of the larger population-based cancer registries in Australia and is a unique data resource, dating back to 1982. Together with other state and territory data, QCR data are used to compile national statistics on cancer incidence and mortality. The data are used to help support key activities such as health service planning and cancer research. This register provides a central repository of all Pap smear results and related tests performed for Queensland women aged between 18-70 years. This information is provided by the pathology laboratories to the register under legislation, unless the woman opts off. The register acts as a back-up reminder service for women who have missed having their Pap smear, a safety net for women with an abnormality and provides a screening history for women and their doctor on request. The data provides quality assurance information to pathology laboratories, assists in performance monitoring including clinical outcomes, and enables evaluation of the Queensland Cervical Screening Program. Initial date for data release March 2015 Preliminary data published December 2012. Further data by December 2014. July 2014 December 2014 March 2015 April 2014 August 2013 December 2013 March 2015 16

Open Data Strategy 2013 2016 Data source Description Initial date for data release Queensland Health Pharmacy Information Management System (i.pharmacy) Queensland Hospital Admitted Patient Data Collection (QHAPDC) Queensland Injury Surveillance Unit (QISU) Queensland Outcomes Collection (QOC) Queensland Radiology Information System (QRIS) ipharmacy is the statewide pharmacy medications information system which enables: 1. the capture of clinical records related to individual patient s medication treatment 2. commercially confidential medication inventory transactional data. Collection of demographic data and clinical information on all admitted patients from all Queensland hospitals. The scope of QHAPDC is episodes of care for admitted patients in all public and private acute and psychiatric hospitals, and free-standing day hospital facilities in Queensland. QHAPDC data are used for a number of purposes at hospital and department levels. Common uses for data at departmental level are: monitoring funding arrangements, negotiating additional funding for health services planning and resource allocation, and for epidemiologists to study patterns of morbidity and mortality. Collects, collates and analyses Level 2 NDS-IS (National Data Standards for Injury Surveillance) injury data from selected hospital emergency departments across Queensland. A statewide collection of detailed information on mental health consumer outcomes and case complexity across a wide range of health and social domains including psychiatric symptoms, physical health, functioning, relationships and housing. Clinicians are required to complete measures, and offer the consumer self-rated measures at regular points during the consumer s contact with the service. The Queensland Outcomes Collection is a key statewide resource for local and state usage that contributes to the ongoing review and development of clinical practices as well as to inform planning, policy development and the broader community. The QOC is based on data collected within the Consumer Integrated Mental Health Application (CIMHA) and predecessor systems. QRIS is the enterprise Radiology Information System (RIS). The RIS is where patients undergoing radiological imaging are registered, radiology examinations are scheduled, and radiologist reports are recorded, stored and distributed. The RIS is also a source of management information. July 2014 Preliminary data published December 2012. Further data by December 2014. March 2015 November 2014 August 2013 17

Appendix B maturity of data release generations Maturity of data release (this adaptation taken from Queensland Government Open Data Agency Consultation October 2012) 1st Generation 2nd Generation 3rd Generation 4th Generation 5th Generation Data index Structured data index Standardised data index Data comunity Integrated data platform Data sets Random data sets, those that agencies can release quickly Some selected data sets, most remain random data sets At least 50 per cent of data sets selected and planned for release Co-ordinated releases by topics across agencies. Some nongovernment data sets Crossjurisdictional platform. Release schedule. Public can upload/share own sets Formats Format of original data Some standard web formatting (RDF, ATOM) 50 per cent web format, some in multiple formats Most in standard web format, some auto conversion Web format with auto conversion License Default licensing Some open licenses Most open licenses Standard open licenses Standard open licenses Requests Email or basic form. No workflow Manual workflow with some site manager interaction Agency workflows automated, some FOI integration Automated FOI workflow, data request voting, workflow transparency Fully automated and transparent process, with custom alerts Source: Delib Australia Pty Ltd. 18

Open Data Strategy 2013 2016 Appendix C glossary Term Definition/explanation/details Source Aggregated data Data that are gathered and expressed in a summary form. Clinical data Data to support direct client care and healthcare provider communication. Queensland Health Data Quality Framework Compliance Confidentiality Confidential information Data De-identified data Data collection Data custodian Data set Disclosure Adhering to the requirements of laws, industry and organisational standards and codes, principles of good governance and accepted community and ethical standards. Ensuring that data or information are accessible only to those authorised and are protected from unauthorised disclosure or intelligible interception. Information, acquired by a person in the person s capacity as a designated person, from which a person who is receiving or has received a public sector health service could be identified. The representation of facts, concepts or instructions in a formalised (consistent and agreed) manner suitable for communication, interpretation or processing by human or automatic means. In the context of the Open Data Initiative, data refers to numbers, letters, or pixels which are expressed in any form. Some data may be in a raw (or basic) form which has not been analysed or arranged into a meaningful form, although some data are meaningful and can be read and understood in its raw (or basic) form. Data that does not identify either directly or by summation an individual who is receiving or has received any health service. Data that has been systematically collected through the process of providing health services to clients, then collated into meaningful groups and stored by the department and/or Hospital and Health Services. The recognised officer responsible for implementing and maintaining data collections according to the rules set by the owner to ensure proper quality, security, integrity, correctness, consistency, privacy, confidentiality and accessibility. A file of specific data from a data collection, for example notifiable diseases statistics for a specific period. Disclosure of confidential information to another person as prescribed under legislation. AS 3806 2006 Queensland Government Chief Information Office (QGCIO) glossary of terms Hospitals and Health Boards Act 2011 QGCIO glossary of terms Adapted from the QGCIO definition of Information Asset Custodian Relevant acts including Hospitals and Health Boards Act 2011; Mental Health Act 2000; Private Health Facilities Act 1999; Public Health Act 2005; Public Interest Disclosure Act 2010 19

Term Definition/explanation/details Source Employee record Format Governance Health record Hospital and Health Services Information Information privacy Information security controls Information system Interoperability Each of the following documents, to the extent it contains information about a public service employee or health service employee, is an employee record about the employee: a report, correspondence item or other document about the employee s work performance, work conduct or work history a medical report about the employee a written allegation of misconduct by the employee. Open data is to be provided in open formats (specifications for content maintained by standards organisations) such as CSV, TXT, XML, more examples are available from www.ausgoal.gov.au/open-formats The functions, responsibilities, processes and procedures that define how the program is set up, managed and controlled. A collection of data and information gathered or generated to record clinical care and health status of an individual or group. 1. This includes information such as assessment findings, treatment details, progress notes, registration and information associated with care and health status. 2. The term health record includes paper-based health records, clinical records, medical records, digitised health records, electronic health records, healthcare records and personal health records. Statutory bodies with Hospital and Health Boards, accountable to the local community and the Queensland Parliament for delivering public health services. Information is any collection of data that is processed, analysed, interpreted, classified or communicated in order to serve a useful purpose, present fact or represent knowledge in any medium or form. This includes presentation in electronic (digital), print, audio, video, image, graphical, cartographic, physical sample, textual or numerical form. Information privacy recognises the importance of protecting the personal information of individuals. It provides rules for how agencies may and must handle personal information (including the collection, storage, data quality, use and disclosure of personal information). The Department of Health and Hospital and Health Services are subject to the Information Privacy Act 2009 (Qld) which applies a set of personal information handling rules based on the National Privacy Principles (Qld). Hardware, procedures, policies and physical safeguards that are put into place to assure the integrity and protection of information and the means of processing and accessing it. The organised collections of hardware, software, equipment, policies, procedures and people that store, process, control and provide access to information. The ability to transfer and use information in a uniform and efficient manner across multiple organisations and information technology systems. Queensland Health Access to Employee Records HR Policy F3 QGCIO glossary of terms Australian Standard Part 1 AS2828 1999 QGCIO glossary of terms QGCIO glossary of terms QGCIO glossary of terms Australian Government Information Interoperability Framework 2006 20