Electronic Clinical Cancer Registration : Evolution to Revolution

The Cancer Registration Application (CRA) is a Web-based subset of a SSWAHS cancer specific data warehouse. It is a virtual interface which allows the user to case-find, view and validate patient-centric cancer information. Information is collated on a electronic form, and awaits capture in an automatic extract file which is run on a weekly basis. Currently, cancer information is fed into the CRA from 3 priority sources:

Traditionally, the process for CCR in SSWAHS was completely manual and time-intensive that involved the following activities:

The CCR successfully implemented a prototype of EDT, which is now an operational element of the CCR process – The CRA.

Patient Administration System delivers all admitted patients who have a cancer code assigned for their episode of care. PAS provides all demographics, the patient’s statutory cancer notification to the Central Cancer Registry, and surgical data. Anatomical pathology provides an account of all the pathology specimens that have been processed in SSWAHS, and their associated diagnoses.

Benefits

Patient information is updated from source systems weekly, providing a timely and up-to-date source of information.

Multiple sources available in one system, reducing double handling and the need to search in different places.

Ability to view patient details and history at a glance to decrease time spent on case-finding.

CRA is available through the SSWAHS intranet, meaning that data can be added/edited to the CRA form electronically from any terminal in the area.

The extract file is loaded into the registry software, and housed in a temporary suspense environment, allowing the user to match and accept cases for CCR. A record comparison function, engineered by the software vendor ensures that duplicate errors are avoided before the case is finalised and added to the registry database.

The SSWAHS Clinical Cancer Registry

Annual Registry Caseload by CIM & Tumour Group

CIM 1 Genito-Urinary

20%

CIM 2 Respiratory,CNS

and Miscellaneous

20%

CIM 3 Haematology, Head

& Neck, Melanoma+Skin

19%

CIM 5+6 Upper GI, Colorectal

+ Extension

23%

CIM 4 Breast and

Gynaecology

18%

In the beginning…

The Evolution Working towards the Future

The future for CCR in SSWAHS is bright, and we anticipate continued evaluation and improvement for the CRA and the EDT work processes as we strive for cancer registration excellence. An important part of the future development of the current CRA functions, will be improving the ease of use and user friendly data entry platform, to fully capture a electronic work process and further streamline the work process. The addition of further data feeds from treatment sources will increase the availability of cancer information:

Medical Oncology eMR Radiation Oncology Information System (Varis) Multi Access Oncology Information System Synoptic Anatomical Pathology Palliative Care eMR

In addition, the extract file format will be enhanced to allow more data items to be added for automated data entry. These additions will include:

Changes and additions to the CCMDS Specific tumour group data item extensions

• Breast • Colorectal • Haematological • Gynaecological • Melanoma • Sarcoma

CRA – The Stepping Stone

Data Transfer and Import

The Revolution Over 2 years of hard work has resulted in the SSWAHS CCR achieving full EDT to improve the efficiency and work processes involved in cancer registration. The CRA has demonstrated that efficiencies in case-finding and data consolidation can be achieved, and that the problems of system interoperability can be overcome. Implementation of additional data feeds whilst maintaining work flow efficiency and data quality, will present new challenges for the CCR. Increasing data volume and ongoing issues surrounding data standards need to be addressed. Despite the successes of our EDT revolution, the role of the CIM is vital to the CCR process and should not be diminished. CIM’s are highly knowledgeable of cancer and skilled in data quality assurance and control of the data. These skills must be maintained and advanced to ensure that the CCR remains an indispensible and robust source of cancer information for our facilities and tumour groups

Acknowledgments The SSWAHS CCR would like to thank the following contributors for their

hard work and dedication in developing our EDT vision.

Bharati Parasu and Amanda Turville – SSWAHS IM&TD IMPAC Medical Systems Inc. (An ELECKTA Company)

M. Sharmin, K. Duggan, V. Poxon, A. Berthelsen, S. Farrugia, C. MacDonald, & J. Prakash Cancer Services, Sydney South West Area Health Service, Liverpool, NSW, Australia

Extract file imported into Registry Software

Suspense File

User Acceptance & Matching

Case finalised & transferred

to live database

IM&TD fine tuned the CRA

and extract format according to import layout

CCR guided design & tested application and extract function

Vendor provided

import layout and made Changes as

required

Data which is already held in the registry

software (white)

Mismatched data items

(pink)

Extracted data from CRA

Imported data selected for transfer to registry database

(purple)

CCMDS and Registry specific items

Demographics, Tumour details & Treatment can

be matched from this screen

Scheduling feeds outpatient clinic appointment information from SSWAHS facilities. This data alerts us to patients who attend Medical or Radiation Oncology appointments, MDT meetings or other cancer related appointments. It is envisaged that our solution to the manually

and time consuming CCR processes, will in the future will allow CIMs the extra time to devote to data validation and quality assurance activities, thereby increasing the value of our important data resource.

In 2005, SSWAHS became a pilot site for a Clinical Cancer Registry (CCR) Project funded by the Cancer Institute NSW, to collect a standardised clinical cancer minimum data set (CCMDS). The aims of the project were to improve the quantity and quality of cancer information that can be used to monitor cancer patterns of care and service provision in NSW. The CCMDS involves the systematic collection of 50 patient based diagnostic, staging, treatment, quality of care and patient outcome data items.

Each year, the SSWAHS CCR collects the CCMDS on over 5000 patients, who were diagnosed or treated within one of SSWAHS’s 11 facilities for their cancer. CCMDS is collected by 5 FT and 1 PT Cancer Information Managers (CIM). Caseload is divided into groups of approximately 1000 cases per annum, with each CIM specialising in one or more topographic cancer sites.

The hard work and dedication of SSWAHS CCR provides a quality cancer information source that can be utilised for improving patient care, service planning and delivery, clinical & epidemiological research and educational purposes.

2. Abstracting:

CCMDS items were compiled from the source systems and paper based patient records then documented on a paper form.

Information source systems lacked inter-operability and used inconsistent data & documentation standards and required validation by CIM’s.

Multiple visits to the AHS treatment facilities were required, as much of the cancer treatment information was unavailable electronically & treatment occurred in different facilities.

Depending on information availability, the manual abstracting process could take anywhere between 30 to 60 minutes per case as demonstrated below.

3. Data Entry and Quality:

Once abstracted, the information was entered manually into the registry database.

The layout of the registry software was designed for cancer registration purposes in the U.S. which lengthened the amount of time spent on data entry by CIMs.

CIMs place great importance in maintaining the quality & integrity of their registry data, but finding adequate time to complete these tasks was challenging.

1. Case-finding:

Identification of new patients & diagnoses was made by investigating multiple information sources & systems.

Sorting of paper based pathology reports and admitted patient reports (HIE) was very time consuming.

Double-handling of data occurred as cases required verification and cross checking between different information systems and reports.

The CCR process needed to be more efficient. An effective method of case finding and abstracting cases, improving case capture rates, and assuring data quality was essential…the REVOLUTION was EVOLVING The ideal solution appeared to be electronic data transfer (EDT) from the hospital information systems that would:

Collect data on a common platform by utilising data feeds from compatible source systems. Have the ability to verify and check data consistency, Manually add information from incompatible systems, to complete a patient abstract Transfer the completed abstracts into registry software.

Evolution of the Cancer Registry Application (CRA) An innovative and collaborative project began between CCR, SSWAHS IM & TD, and our software vendor to evolve a system of electronic data transfer (EDT) into a virtual repository (CRA) that captured the CCMDS. Our software vendor provided a U.S based standardised import layout (NAACCR) and developed a patient matching and import function to enable electronic data imports from the virtual repository. IM & TD created an extract file format to conform with NAACCR standards to facilitate data transfer between the 2 systems. The registry staff tested workflow procedures, extract & import functions and data integrity in a lengthy, but productive process.

These new prospects open a huge array of unanswered questions to which we will investigate further solutions, on our quest to improve cancer registration in SSWAHS.

Correspondence to: The SSWAHS CCR Team Email: SSWAHSClinicalCancerRegistry@sswahs.nsw.gov.au

Website: www.sswahs.nsw.gov.au/sswahs/cancer