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1 Rathdowne Street, Carlton, Victoria 3053Australia
Title
The Victorian Cancer Registry now supports electronic cancer registration.
Authors
Helen Farrugia, Meng Tuck Mok, Debbie Billiet, Joyce Sharp
Organisation
Victorian Cancer Registry
Contact details
Cancer Epidemiology Centre, The Cancer Council Victoria, 100 Drummond Street, Carlton, Victoria 3053, Australia.
Tel: 61-3-9635 5154
Fax: 61-3-9635 5330
Email:
Abstract
The Cancer Act 1958, as amended, mandates cancer reporting to the Victorian Cancer Registry (VCR) from hospitals, pathology laboratories and prescribed registers in Victoria. In 2004, VCR received 112,000 cancer notifications, of which 64% were electronic.
In 2002 the VCR commenced a major re-engineering project. One outcome has been the implementation of a new data repository that incorporates electronic data processing functionality. Simultaneously a document management system was implemented to replace the existing paper files of notifications. In addition a secure external web site has been established to facilitate secure transfer of electronic cancer notifications as well as providing notifiers with the capacity to complete a cancer registration e-form.
The benefits of VCR re-engineering include improved efficiencies and security in the processing of cancer registration information. This will result in increased availability of comprehensive and up to date cancer incidence data.
Until recently, there has been no facility for secure electronic cancer notifications to the VCR. In addition, not all notifiers have the capacity to complete electronic cancer registration. In late 2004, the VCR surveyed notifiers to identify preferences for electronic cancer reporting.
In response to this survey the VCR has established the Victorian Cancer Registry Internet Portal (VCRIP) to facilitate electronic cancer reporting. VCRIP is a web portal that presents an accessible and secure solution for the transfer of files in either the specified generic data format or by completing cancer registration on-line using the e-form. Reports published by VCR such as Canstat can also be downloaded or customised reports can be delivered securely to specific notifier WebPages. Security and encryption is assured with the SSL protocol typically used for commercial transactions over the Internet.
VCRIP is expected not only to meet notifier and VCR requirements for secure electronic data capture, it will also serve as communication portal between the VCR and its notifiers.
VCR summary
The VCR has been operational since the 1940’s and incorporated voluntary cancer registration from the major teaching hospitals in and around Melbourne. The Registry became truly population based in 1982 when notification became mandatory in accordance with the Cancer Act 1958. All hospitals and pathology laboratories and prescribed registers are required to report to the Cancer Council.
The VCR serves a number of purposes. It provides population based incidence data that allows for national and international comparison regarding the detection and treatment outcomes of cancer. This data is used in the planning and evaluation of public health initiatives within The Cancer Council Victoria and by external bodies.
Current examples of use of Registry data include the recruitment of subjects into ethically approved cancer research studies. Data is also used for record linkage studies; these are typically research or occupational cohorts like Health 2000 requiring cancer diagnosis verification or identification. Cancer registration data also contributes to public health program evaluation such as Breastscreen and Cervical Cytology. More recently, Registry information has been used in health service delivery. The VCR verifies self reported family history of cancers for patients attending Family Cancer Centres. This enables genetic counsellors and clinicians to provide more accurate risk assessment and risk management advice to their patients.
VCR re-engineering
In 2002 VCR commenced a major re-engineering project. The existing Unix database was dependent on direct data entry and too rigid to allow for the incorporation of additional data items. A new system, incorporating new technologies inherent in SQL Server 2000, readily provides the expansion of the Registry to include other significant data items and caters for automatic data capture. The aim of the project will result in a fully functional and integrated system able to achieve the standards required of continuing timely and quality service in an environment of technological change.[1]
VCRIP is one part of the VCR re-engineering project and will help facilitate the adoption of a fully electronic cancer registration system. Until recently, there was no secure method of transferring cancer registration data to the Victorian Cancer Registry in a standardised or timely manner. Given the VCR’s aim of becoming a fully electronic register, VCRIP will offer a secure mode for notifiers to routinely submit cancer notifications and streamline cancer reporting by providing a convenient and accessible web portal.
WHERE ARE WE NOW?
In Figure 1, analysis of 2002-2004 notification data shows an increase in electronic notifications. In 2004, the VCR received 90% of pathology data in electronic format. In comparison only 32% of hospital notifications were notified electronically.
Figure 1. The percentage of electronic and paper cancer notifications received by the Victorian Cancer Registry from pathology laboratories and hospitals from 2002-2004.
HOW DO WE INTEND TO IMPROVE?
VCR recognise that the introduction of HealthSMART will improve the IT capabilities of a number of public hospital notifiers enabling for the first time the electronic submission of data. For smaller notifiers such as day procedure centres, hospices or small private hospitals where the financial incentive to invest in an IT solution is non-existent the VCRIP web based e-form will provide a streamlined, easy to use notification process.
Within the first twelve months of VCRIP being operational, part of VCR’s key outcome indicators is to:
(1) Increase electronic notification by hospital notifiers by 30%.
(2) Encourage at least 90% of all hospital notifiers that submit less than 200 paper registrations on average per annum to use the e-form.
Benefits of electronic registrations
The benefits of electronic registrations include the improved timeliness of cancer data available for population statistics and research. It will also enable VCR to feedback to its notifiers regarding the cases they have submitted.
The return of date and cause of death for cases to notifiers are one of the valuable feedback the VCR will be able to provide. The VCR receives death information monthly from the Registrar of Births, Deaths and Marriages for all deaths occurring in Victoria. Cases are also matched annually to the National Death Index by the Australian Institute of Health and Welfare for Victorians who die interstate. With electronic registrations, the VCR can provide monthly feedback for updates on cause and date of death.
Health services and agencies utilise data from the VCR to devise plans for public health and to help implement strategies for health policies. The VCR compiles aggregated data for cancer trends and mortalities across the state. More specific numbers and types of cancers notified by a particular institution are also available for institutions to use in determining the strategic direction for their health programs and within their health networks.
Timely data will also benefit the numerous bodies that regularly utilise VCR data including the recruitment of cases to management studies and Health 2000.
As all Health Information Managers will appreciate, there are major cost savings in printing, processing and storing paper forms. A recent publication by the Communication Research Institute of Australia (CRIA) indicates that in the United States, every $1,000 spent on printing forms will cost another $19,000 in storing, filling and processing them.[2] Duplication in workload especially for data entry thereby putting a burden on resources will be minimised.
Victorian Cancer Registry INterNET PORTAL (VCRIP)
OVERVIEW
VCRIP was established in response to a survey of all notifiers to the Victorian Cancer Registry conducted in December 2004 where respondents supported a willingness to submit cancer registrations electronically. It was determined that the most feasible and accessible solution is the creation of a vertical internet web portal using the same proven standard of security and encryption employed by banks and commercial transactions over the internet. All precautions have been taken to ensure that privacy and confidentiality of data submitted is maintained and is compliant with the National Privacy Principles as outlined in the Health Records Act 2001.
OBJECTIVES
VCRIP is a secure vertical web portal for VCR notifiers that will allow them the ability to submit cancer registration electronically and securely via the internet. VCRIP will provide:
§ For those notifiers currently submitting cancer registrations electronically, a mode for the secure electronic transfer of the specified generic file format.
§ For notifiers currently submitting paper registrations, a web based online cancer registration e-form which can be completed, saved and submitted securely.
§ A secure forum to facilitate communication and highlight data issues between VCR and its notifiers and vice versa.
§ A platform to disseminate population base or consolidated organisation specific cancer data.
SECURITY
A central secure server will act as a portal for cancer registration notifications. Communication between the client and server is conducted using the Secret Socket Layer (SSL) protocol to ensure end-to-end encryption and security between the web client and web server.[3] This is a trusted, high-level general-purpose protocol for sending encrypted information over the internet, typically used for commercial transactions.
ACCESSIBILITY
The VCRIP site is designed to be web based so that it is readily accessible from any computer as long as there is an internet connection and a web browser. Compliance with protocols, formats and guidelines of the Web Accessibility Initiative (WAI) as set out by the World Wide Web Consortium (W3C) ensures universality in access to VCRIP.[4] The e-form is written in HTML, which allows it to be easily readable by all internet browsers while utilising Java script for data validation and provides many advantages to data entry.[5] Coding done in ASP and Virtual Basic links the front-end HTML user interface with a backend SQL Server database. As cancer registrations can be the responsibility of a group of Health Information Managers and some operating across different centres within the hospital network, a web based system is considered the optimal solution in terms of user accessibility and security.
TESTING
The VCRIP site has undergone alpha testing looking at functionality and system design and coding errors. Further beta testing is now currently underway.
A few notifier facilities are currently participating in beta testing VCRIP for functionality and site navigation. The VCR has designed test protocols and set evaluation criteria to assess functionality. Feedback from these centres will be evaluated and will provide invaluable assistance for further improvements before release of the final production version.
ROLLOUT
VCRIP is intended to go ‘live’ and be fully functional in early September 2005.
The VCR is targeting a phased rollout (briefly outlined below) to the various notifiers based on their ability to deliver cancer registration electronically and the number of registrations submitted annually.
Firstly, notifiers already sending in electronic registration will be contacted to setup user accounts and use VCRIP to facilitate the transfer of the specified generic files. This will provide an efficient, standardised and secure method of submitting cancer registrations. Secondly, select small hospitals, day procedure centres, bush nursing hospitals and other notifiers (without funding or resource capabilities to generate electronic file cancer registrations) are encouraged to use the e-form. This alternative to paper forms will greatly enhance the registration process by reducing the processing time at the VCR. Thirdly, the VCR will work with notifiers benefiting from HealthSMART in receiving electronic cancer registration through the cancer module of the endorsed Patient and Client Management Systems.
Users have to register accounts with VCR before being issued with a username and password to access the VCRIP site. The VCR has identified a few strategies to help promote and market VCRIP and will actively be pursuing these options in the next few months.
For a VCRIP guide to getting started, refer to the information sheet at the end of this paper.
DISCUSSION
The VCR is now currently in the process being re-engineered, upgrading to and adopting new improved technologies. As part of the re-engineering project, VCRIP will provide a secure and convenient method for notifiers to transfer cancer notifications electronically using the generic file format or completing the new web based cancer registration e-form via the internet. Supporting electronic cancer notification will allow the VCR to improve efficiencies and provide integral cancer information to benefit both the community and health agencies.
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Authors CURRICULUM VITAE
Helen Farrugia
Graduated with a degree in Health Information Management and a Post Graduate Diploma in Business Information Management. Helen has more than 15 years cancer control program experience, which commenced in 1989 when she joined the Cancer Council Victoria initially working on clinical trials. Subsequent work experience includes management of the Victorian Cancer Registry (VCR), Victorian Family Cancer Registry (VFCR), VCR record linkage and study recruitment programs as well having experience as information manager for BreastScreen Victoria.
Debbie Billiet
Debbie Billiet is a Health Information Manager who has worked in a variety of roles during her career. These include data management for clinical trials, Patient Services Co ordinator and being part of the operational management team of a large Health Information Service in a tertiary hospital. She has been a Team Leader for the implementation of a PAS system and has recently joined the Victorian Cancer Registry as the Operations Manager. She has a keen interest in system development and implementation.
Joyce Sharp
Graduated with a degree in Health Information Management and a Graduate Diploma in Business Information Technology. Has worked in both hospital and registry settings in Canada and Australia. Current role is as a Project Officer at the VCR assisting in the functionality testing and re-engineering of the cancer registry.
Dr. Meng Tuck Mok
Graduated with a degree in Science and worked as a researcher in protein biochemistry and cell biology. Previously responsible for coordinating a project developing an IT solution for tracking clinical trials at Cancer Trials Australia as well as designing an informative corporate website. Involved in a working party in establishing the cancer module for Molecular Medicines Informatics Model (MMIM) initiated by Bio21. Currently involved at VCR to develop a facility to accommodate and promote electronic reporting for cancer notification.