The International Collaboration on Cancer Reporting (ICCR) was created in 2011 and, at the start of 2022, is supported by 18 professional organizations across six continents, and has published 56 cancer histopathology reporting datasets involving >500 expert pathologists. This Special Issue of the Journal publishes a series of papers linked to the latest ICCR datasets for gynecological cancers. In this editorial we describe the purpose and history of the ICCR, the processes by which we develop quality-assured datasets and plans for ensuring global access to synoptic reporting linked to the datasets. As the dataset for endometrial cancers was one of the first to be developed, the evolution of datasets for gynecological cancers illustrates some of the ways in which ICCR processes have matured over the last decade.
PURPOSE AND VISION
The vision of the ICCR from its inception has been to improve global outcomes for cancer patients and population cancer control through internationally standardized protocols.
Cancer pathology reporting datasets are created primarily to support histopathologists in delivering reports for cancer patients that, based on good quality published evidence, contain the information required for optimal decision making and patient care. Cancer reporting datasets have an important educational role by promoting uniform terminology and definitions of key features. Datasets supported by information technology (IT) systems that facilitate synoptic reporting can improve efficiency for pathologists and clinicians and, through structured data capture, facilitate clinical audit, quality assurance, and research 1–6.
The immediate clinical impact of a national approach to standardized synoptic reporting is demonstrated by a consistent improvement in survival for patients with colorectal cancer through improved management 7. Structured reporting of cancer pathology facilitates the accrual of data by cancer registries for healthcare planning and, for low and middle income countries (LMIC), the lack of detailed planning to support pathology and laboratory medicine is seen as a significant adverse factor for cancer control 8.
In some jurisdictions, the use of datasets is one of the metrics used to assess the quality of laboratory and cancer services 6. However, across the international community there is considerable variation in the capacity of healthcare infrastructure to support cancer pathology reporting systems. ICCR provides a resource that is applicable to pathologists in all countries—challenges around languages, IT, laboratory capacity, and political support are being addressed in current projects.
HISTORY AND EVOLUTION OF ICCR
The collaboration was formed in 2011 by 4 organizations with experience in developing and using cancer reporting datasets, the Royal College of Pathologists UK, the Royal College of Pathologists of Australasia, the College of American Pathologists, and the Canadian Association of Pathologists in conjunction with the Canadian Partnership Against Cancer. A governance model was established, and 4 datasets (lung, endometrial, melanoma, and prostate cancers) developed using experts from each organization. This pilot project was very successful and, in 2014, a formal collaboration established the ICCR as a charitable, not-for-profit organization registered in Australia. Strong links with the Australasian College support the project team and help to ensure good governance.
Funding for ICCR is largely provided by subscriptions of the 18 sponsoring organizations (Table 1). Additional support from specialist pathology organizations, including the International Society of Gynecological Pathologists, is invaluable for specific purposes.
TABLE 1 -
ICCR sponsoring members 2022
|Royal College of Pathologists UK
|College of American Pathologists
|Royal College of Pathologists of Australasia
|Canadian Association of Pathologists in association with the Canadian Partnership Against Cancer
|European Society of Pathology
|American Society of Clinical Pathology
|Royal College of Physicians of Ireland, Faculty of Pathology
|German Society of Pathology
|Brazilian Society of Pathology
|Hong Kong College of Pathologists
|Italian Society of Pathological Anatomy and Cytology
|Austrian Society of Pathology/Austrian Division of the International Academy of Pathology
|Japanese Society of Pathology
|French Society of Pathology
|Russian Society of Oncopathology
|Chinese Society of Pathology
|Swiss Society of Pathology
|Arab Division of the International Academy of Pathology
Cancer pathology reports aim to provide a clear diagnosis, describe the extent of spread (stage) and indicate the likely future behavior of the cancer. ICCR therefore works very closely with the main international standard setting organizations and the main groups of users of statistical information on cancer, the International Association of Cancer Registries (IACR).
The World Health Organization (WHO) Classification of Tumours provides the global standard for tumor nomenclature (https://whobluebooks.iarc.fr). ICCR has a strategic alliance with the International Agency for Research on Cancer (IARC) to align its cancer dataset development schedule with revisions of the WHO Classification of Tumours (“Blue book”) series. The successful program for the development of the 5th series of “Blue Books” involves expert pathologists from around the world, the same experts who donate their time for ICCR work. The work on the ICCR datasets occurs in the 9 to 12 months after work on the “Blue Books” has been completed, thus allowing the latest classification to be used in the datasets while avoiding excessive work for the pathologists involved. The appointment of key individuals for the dataset work (see below) is informed by, and overlaps, the work on the Blue Books. In 2022, there will be links embedded in the web-based version of the Blue Books to relevant ICCR datasets.
Cancer staging systems including the TNM system published by the American Joint Commission on Cancer (AJCC) and Union for International Cancer Control (UICC), and systems for gynecological cancers published by The International Federation of Gynecology and Obstetrics (FIGO) are integral to pathological reporting of cancers and included in most ICCR datasets.
The ICCR also works with global specialty organizations such as the International Society of Gynecological Pathologists and the International Society of Urological Pathology to incorporate evidence-based reporting recommendations derived from consensus conferences and other guidance documents.
Evolution and Maturation of ICCR Processes
The ICCR is governed by a Board of Directors (BoDs) which comprises nominees from sponsoring organizations and administrative staff. The Board defines strategy, approves budgets, and has oversight of the work of the Dataset Steering Committee (DSC) and the Structured Reporting Implementation Committee (SRIC). The details of the processes and governance for ICCR datasets can be accessed on our website (www.iccr-cancer.org/datasets/dataset-development).
The DSC is the main driver for the development and revision of datasets, involving pathologists nominated by sponsoring organizations, the project managers and representatives of our strategic partners. The key roles and responsibilities are outlined in Table 2. Essentially, the DSC provides quality assurance through appointing appropriate people to key roles and reviewing the output of the Dataset Authoring Committees (DAC). Global acceptability of the datasets is facilitated by a period of open consultation and response to the comments received.
TABLE 2 -
Key roles and responsibilities for dataset development
||Key responsibilities (this is not an exhaustive list)
||Key people for gynecological cancer (datasets in 2020)
|Dataset Steering Committee (DSC)
||Select a Dataset Series Champion for a suite of datasets Select the Chair(s) of the DACs. Ratify the Domain specialist nominations. Review and endorse the final dataset prior to open consultation Review responses to, and amendments arising from, open consultation before final publication
||Chair of DSC: Tim Helliwell Project managers: Meagan Judge Fleur Webster Christina Selinger
|Dataset Series Champion
||Provide advice and support to the ICCR DSC on the choice of DAC chairs Provide advice and support to the Chairs of the DACs to ensure harmonization across the datasets under development Assist the Chairs of the DACs in the identification and nomination of domain specialists
|Chairs of Dataset Authoring Committees (DACs)
||Nominate 8–10 domain specialists (comprising expert pathologists, and where applicable 1–2 clinicians) for review and endorsement by the ICCR DSC. Lead the committee seeking the best input from all participants Work closely with the ICCR DSC member and Project Manager to ensure adherence to the ICCR process Lead the authorship of an academic article on the ICCR dataset for submission to a peer-reviewed journal
||Glenn McCluggage (Vulva and Vagina) Kay Park (Cervix) Xavier Matias-Guiu (Endometrium) Pei Hui (Gestational trophoblastic neoplasms) Blake Gilks (Ovary and Fallopian tube) Marissa Nucci (Mesenchymal Tumours)
|Members of DACs
||To create a practical dataset that can be used for a broad audience, including countries that do not have advanced medical care Define core data items (essential for clinical diagnosis, management, and prognosis based on substantial evidence) Define noncore data items (key information representing good practice but which does not meet the threshold for core data) Provide a commentary that assists pathologists in using terminology consistently
||Expert pathologists and clinicians from nineteen different countries
The expanded membership of ICCR in recent years benefitted the work of the DSC through:
- A better understanding of the differences in the practice of pathology around the world.
- Ensuring that datasets represent a consensus of opinion and are relevant and useable in clinical practice.
- An understanding of the limited capacity for molecular and other ancillary tests in some countries.
- Including a larger pool of experts, recognized in their own countries, to inform dataset development and promote local adoption.
CHALLENGES FOR THE DEVELOPMENT OF GLOBAL DATASETS
Cancer reporting datasets continually evolve in the light of changes in scientific knowledge and clinical practice, and changes in international standards. Some of the current challenges are explored here.
Integration With Other International Standards
The 3 principal cancer staging organizations—FIGO, UICC, and AJCC—operate independently and the lack of harmonization, particularly for anatomical descriptors, presents challenges for ICCR. As most countries use UICC TNM staging, this is given preference for inclusion in the ICCR datasets. However, publication of the 8th editions of TNM by AJCC and UICC revealed several key differences requiring ICCR to license TNM staging from both organizations. In 2020, the AJCC moved from an edition-based model to a versioning approach of “rolling updates” to the staging of cancers at individual anatomical sites. The first AJCC update was for cancers of the uterine cervix which aligned AJCC with the most recent updates to FIGO staging of cervical cancer. UICC TNM Staging for Cervix was not aligned with those changes. Following discussions between ICCR and UICC, the UICC staging for cervical cancers was revised. However, future alignment of the three staging systems remains in doubt and will present ongoing challenges.
As publication schedules for classification, staging systems, and datasets will inevitably be asynchronous, ICCR is committed to the annual review of linked content and to update datasets as required.
Reflecting Current Practice and Responding to New Research
While datasets provide some stability for pathologists in an ever-changing world, it is important that they evolve with advances in knowledge and clinical practice. To some extent, the use of core data items (those with sufficient evidence from large studies to justify their use in clinical practice) and other, noncore, data items allow for a change in categorization as evidence accumulates over time. The commentary on each data item also provides an opportunity to describe the nuances of real life for pathologists and to explore evolving trends in practice. However, in some cases the DAC must make a decision on the timeliness of introducing new practices, recognizing that changes in reporting practice can have significant impacts on both the reporting pathologists and clinicians who use the datasets, as well as on those organizations using the data collected such as Cancer Registries. It is important to find the correct balance. As an example of such an issue, in 2015 the DAC for the development of the ovarian cancer dataset grappled with an issue regarding designating the site of origin of extrauterine high-grade serous carcinomas (HGSC).
The primary site of nonuterine HGSC should be designated as ovarian, tubal or primary peritoneal according to the FIGO 2014 staging system 9. Available evidence indicated that most nonuterine HGSCs arose from the fallopian tube (although historically most were regarded as of ovarian origin), but there were a number of problems in the approach to ascertaining the primary site and wide variation in practice amongst pathologists. This had significant implications for epidemiological studies, determination of tumor incidence and mortality, data collection by cancer registries and entry into clinical trials. A study in 2014 had recommended an approach to assigning the site of origin of extrauterine HGSC 10. The decision for the DAC was whether to include the new recommendations or to continue with the established approaches to primary site designation. After considerable discussion, the DAC agreed to include them in the ICCR dataset as “a suggested approach” with the proviso that “assignment of origin in an individual case is left to the discretion of the pathologist and the clinical team, ideally in the setting of a multidisciplinary team meeting.” The 2021 dataset for carcinomas of the ovary, fallopian tube and peritoneum provides a detailed commentary to assist pathologists in recording consistently this important piece of information and is aligned with the 2020 WHO Classification of Female Genital Tumours 11.
Another example was the recent publication of an updated FIGO staging system for cancers of the vulva 12 which occurred just after the ICCR vulval carcinoma dataset was finalized in mid-2021. One of the FIGO changes modifies the method used to measure depth of invasion, however, it was the opinion of the DAC that prospective data on more patients were needed to validate this method before it would be recommended for use in the dataset.
Dependence on Ancillary Studies
With an increasing number of molecular characteristics being used to classify tumors, there is an increase in the number and complexity of ancillary studies to be considered as part of a cancer report. Some of these may be routine good practice in some countries but aspirational in less developed jurisdictions. Given the challenges in many parts of the world in conducting these tests the ICCR initially categorized ancillary studies as noncore, but more recently has changed its approach to reflect the views of authoring committees that some ancillary tests should be standard practice for patient management regardless of the jurisdiction. Each DAC determines which ancillary tests are core or noncore data. Additional standard dataset commentary has been included which acknowledges that a lack of resources may mean that such testing is not always possible. However, the DSC concluded that with the increasing importance of ancillary testing to diagnosis and prognostication the datasets needed to reflect this accurately. There was also the view that including essential ancillary tests as core elements would encourage more widespread use of clinically important tests.
As ICCR has now completed 56 cancer reporting datasets (out of a projected goal of more than 80) including those for all of the common cancers, there is a shift in emphasis to assisting with the implementation of the datasets in the global workplace including supporting IT, other agreements with national and international organizations and translations. The IT infrastructure required to move synoptic reporting from a paper-based proforma to an electronic format is essential to providing a more consistent product for clinical use and facilitating structured data capture for other purposes. This work is being guided by the SRIC of ICCR which draws on global expertise in pathology informatics. The challenges are partly in writing the software and partly in understanding different governance and data protection issues in different countries. A range of approaches is being explored from standalone packages to working with suppliers of laboratory information systems to integrate current ICCR datasets into the systems offered to pathologists. Through collaboration with the University of Nebraska, core data items are now encoded in SNOMED-CT facilitating transmission of data between systems 13.
ICCR is developing Memoranda of Understanding with some jurisdictions, such as Australasia and UK, to adapt the ICCR approach and use core elements and commentary from the ICCR in local formats with the option to include additional elements to meet local needs. ICCR is developing partnerships with other organizations to look for innovative ways in which the ICCR datasets can be pushed out to LMIC. One such example is the partnership with the City Cancer Challenge Foundation (https://citycancerchallenge.org/) who are working with cities around the world to improve access to equitable, quality cancer care, through public and private sector partnerships to design, plan, and implement cancer solutions. ICCR is part of a pilot to improve laboratory infrastructure and provide a synoptic reporting platform in Kumasi, Ghana.
In 2022, the ICCR will be working with IARC and the International Academy of Cytology (IAC) who have started work on a series of cytopathology reporting standards, similar in nature to the WHO Blue Books, initially covering lung, hematopathology, pancreatobiliary, and soft tissue sites. The aim is to improve the quality of cytopathology reporting and hence patient care through a standardized approach which includes the key diagnostic cytopathological features and ancillary studies for diagnostic and prognostic evaluation. These systems are likely to be particularly useful in LMIC where cytopathological diagnosis is often used in preference to histology.
Translation of the ICCR datasets into other languages is key to adoption of the standards in many countries. With generous sponsorship from the American Society of Clinical Pathology (ASCP), 21 datasets were translated into 3 languages in 2018. This was welcomed by the global community and membership of the ICCR, and reflects the growing appetite for datasets in local languages. The cost of further translations to ISO standards is significant and a barrier to future translation work, but as part of the ICCR forward plan, we are looking to philanthropic organizations to meet the financial challenge of the translation work.
The success of the ICCR process includes global endorsement by national and international organizations, and the strong altruistic support by the histopathological community. We continue to explore a range of ways to improve cancer reporting for pathologists with the ultimate goal of optimizing care for cancer patients around the world.
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