Structured Pathology Reporting of Cancer

Te Aho o Te Kahu - our te reo Māori name means ‘the central thread (aho) of the cloak (kahu)’ and represents the role the Agency plays in leading and uniting all the organisations, communities and people across the cancer continuum. We are equity led, whānau centred, knowledge-driven and outcomes focused.

As part of our commitment to fewer cancers, better survival and equity for all, our work involves researching and analysing data and information to inform and implement best practice. This includes being the leading source of information on cancer control for people with cancer and their whānau, health care professionals and anyone else involved in cancer care.

In Aotearoa New Zealand, there is significant variation in how patient data is collected, stored and shared across the health sector. This variation is both impeding the quality and timeliness of decision-making by health professionals and patients/whānau, and equity focused improvement and research efforts.

To effectively support the prevention and management of cancer, data need to be timely, relevant, accessible, shareable and secure for all. In response, Te Aho o Te Kahu is currently developing a collection of services and tools called CanShare to improve the sharing of cancer information. This includes the national adoption of data standards over the coming years to aid the sector transition to a digital data environment.

A complete and clear pathology report forms the basis for optimal cancer treatment decisions.

In 2021 Te Aho o Te Kahu undertook a series of discussions with the sector to understand where we could best support the sector in relation to pathology services and in particular, reporting.

A key theme was that consistent and comprehensive national structured pathology reporting of cancer is still a top priority.

Depending on cancer type there is an increasing number of parameters needed to be requested from, and reported by, pathologists. This in turn increases requirements for more comprehensive cancer information to be made available in pathology data systems.

A project has been established to develop data standards to enable the timely sharing of pathology information for decision-making purposes.

The data standards will identify and describe the clinically relevant data elements to aid implementation in requesting and reporting pathology workflows for each cancer.

Development and adoption of data standards is fundamental to support the sector operate successfully in a digital data health environment.

What is a HISO standard?

Health Information Standard Organisation (HISO) Published standards set requirements for the safe, secure and purposeful use and sharing of health information. Standards ensure the integrity of health information and that systems are interoperable.

They are part of an ecosystem in which patients and consumers and their family/whānau have access to and control over their own information.

Click here for more information.

What are data standards?

Data standards identify and describe clinically relevant data elements with associated guidance to aid implementation in clinical workflow data systems and processes.

It is not expected all data elements included in the standard can be collected immediately and/or are clinically required.

Why are data standards important?

To have a connected digital health environment, national adoption of data standards and collaboration across the health sector is fundamental.

This is because:

• Providers/vendors can design their systems to collect, report and share cancer information using the latest best practice evidence and technologies.
• Health care practitioners can access the latest quality cancer information to discuss treatment and care options/progress with patients/whānau.
• Patients have better access to, and control of, their own and more comprehensive health information.

Full implementation of data standards is subject to existing data systems, technology roadmaps and provider arrangements notwithstanding clinical requirements.

How will they keep up to date?

The data standards will be continuously monitored and updated according to international best practice, sector feedback and evolving local requirements.

Outline

To understand the requirements to achieving structured pathology reporting of cancer, Te Aho o Te Kahu established a working group to convert thoracic cancer (lung, pleura, and thymic) pathology protocols into a technical data standard for implementation planning.

Based on the extensive learnings from the Thoracic workstream, subsequent workstreams are being established by Te Aho o Te Kahu to develop data standards for all other cancers over the coming year over the coming year.

Types of standards

• Development: a standard that has actively been developed by a working group, so your feedback is requested in preparation for submission to HISO for approval.
• Working Draft Dataset: a dataset that is not considered sufficiently robust since it has not been recently updated by international processes and/or insufficient clinical support available to develop.
• Draft Data Standard: a HISO endorsed draft data standard that has been developed from ICCR/RCPA protocols by subject matter experts/clinical representatives. The draft data standard is considered sufficient for piloting in a system but does require wider sector review through feedback and/or use in pathology services over a period of up to 12 months.
• Data Standard: a HISO endorsed finalised data standard where changes have been applied to the draft data standard from feedback through the release period with health care practitioners and subject matter experts, confirming it is fit for purpose for implementation in a production system.

  The data standards will be published on the Te Aho o Te Kahu website linked with the Ministry of Health’s HISO page including a consultation site to facilitate wider feedback opportunities from the sector.   All necessary SNOMED CT content for each draft/finalised standard is released in the SNOMED CT NZ Edition.

Te Aho o Te Kahu recognises the central importance of our Te Tiriti o Waitangi obligations, including ensuring working in partnership with Māori with a clear focus on achieving equity.

This includes the rights and interests of Māori in the collection, ownership, and application of data. We are actively working to better understand our obligations and responsibilities with respect to Māori data sovereignty and governance.

To give effect to Te Tiriti o Waitangi, being equity-led and whānau-centred, cancer information must be timely, relevant and accessible, and used appropriately for the purpose for which it was intended.

Pathology information is not sufficiently collected to easily understand inequities in access and outcomes at a local, regional or national level including by ethnicity.

Our initial equity impact assessment initially focused on the clinical and technical nature of data standards. The learnings from the Thoracic Working Group helped inform discussions with a range of stakeholders including He Ara Tangata and the National Kaitiaki Group (NKG) for Māori cervical cancer. In response we are taking practical steps to further understand and incorporate te ao Māori in relation to the data associated with the specimens of tissues and cells.

The imminent release of the Ministry of Health position statement on Māori Data sovereignty will be key to providing relevant guidance to the sector in the collection, reporting and sharing of health information.

We will be working with laboratories to undertake a series of pilots and support sector led initiatives over the coming years to support implementation efforts.

Our goal is structured pathology reporting data being used for decision-making, improvement and research.

If you would like to know more email us on info@teaho.govt.nz.

Pathology needs to prepare for a more digital standards-based health data environment/ecosystem as part of the broader health reforms underway.

The purpose of this project is to provide a solid foundation for the national implementation of electronic structured pathology reporting. It does so by developing data standards to generate a broad agreement regarding the data fields and values that should be included in pathology requests and reports based on ICCR/RCPA clinically endorsed protocols. This is to help ensure reports are comprehensive, consistent and complete.

This project is the initial step that we need to take to support the sector transition to a digital data environment.

We need health care practitioners and subject matter experts to ensure all the data elements in the standard are accurate and complete to support comprehensive requesting and reporting pathology services.

The data standard is not an implemented form. In fact, when implemented, the data standards will look quite different in your practice/laboratory.

The key principle of entering data once and sharing/reusing across multiple systems is fundamental. Full implementation would only be practical if much of the data could be automatically populated via patient and clinical systems to minimise the administrative burden on clinicians and others involved in data entry.

It is not expected all data elements included can be collected immediately and/or are clinically required. This includes balancing structured data capture and free text for more nuanced narrative reporting.

In addition, we need your expertise to align the clinical terms you use every day with SNOMED CT terms for enhance quality and consistency in the collection and sharing of data.

We are working with laboratories to undertake a series of pilots while supporting sector-led initiatives to implement the data standards in practice. Doing so will help us gain a better understanding of requirements and demonstrate the benefits of electronic structured reporting.

For more information email us at info@teaho.govt.nz.

Te Aho o Te Kahu recognises the central importance of our Te Tiriti o Waitangi obligations, including ensuring working in partnership with Māori with a clear focus on achieving equity.

This includes the rights and interests of Māori in the collection, ownership, and application of data. We are actively working to better understand our obligations and responsibilities with respect to Māori data sovereignty and governance. To give effect to Te Tiriti o Waitangi, being equity led and whānau centred, cancer information must be timely, relevant and accessible, and used appropriately for the purpose for which it was intended.

Pathology information is not sufficiently collected to easily understand inequities in access and outcomes at a local, regional or national level including by ethnicity.

Our initial equity impact assessment initially focused on the clinical and technical nature of data standards. The learnings from the Thoracic Working Group helped inform discussions with a range of stakeholders including He Ara Tangata and the National Kaitiaki Group (NKG) for Māori cervical cancer. In response we are taking practical steps to further understand and incorporate te ao Māori in relation to the data associated with the specimens of tissues and cells.

The imminent release of the Ministry of Health position statement on Māori Data sovereignty will be key to providing relevant guidance to the sector in the collection, reporting and sharing of health information.

There are four main internationally recognised protocols for the reporting of cancer:

• International Collaboration on Cancer Reporting (ICCR)
• Royal College of Pathologists of Australasia (RCPA)
• Royal College of Pathologists (RCPath)
• College of American Pathologists (CAP).

In Aotearoa, RCPA protocols are the recommended standard reporting protocols. The RCPA (along with RCPath, CAP, and other international pathology organisations) contribute to the ICCR protocols. In turn, the RCPA incorporates all core recommendations from the ICCR datasets as well as any additional local elements, to create bespoke protocols for Australasia. All protocols use up to date World Health Organization (WHO) Blue Books to standardize tumour nomenclature.

The most updated protocol is used as the basis for the development of each data standard. Other resources used for development include: American Joint Committee on Cancer (AJCC) Cancer Staging Manual, 8th edition. United States of America National Comprehensive Cancer Network (NCCN).

All data standards developed align with this process.

No.

A HISO Data Standard is considered “ideal”. This means it is not expected all data elements can be collected immediately and/or are clinically required. Full implementation would only be practical if much of the data could be automatically populated via patient and clinical systems to minimise the administrative burden on clinicians and others involved in data entry. The key principle of entering data once and sharing/reusing across multiple systems is fundamental. Therefore, the intention is not to mandate the immediate collection of all this information within data systems and workflows, but to help generate broad agreement regarding what we should be aiming for as we seek to improve our cancer information systems and data collection capabilities