Breast Cancer Foundation NZ
Breast Cancer Foundation New Zealand is a donor-funded charity working to reduce deaths from breast cancer through research, education and awareness, support, and the country’s national breast cancer register.
Breast Cancer Foundation has one promise: zero deaths from breast cancer. Behind that promise sits a quietly remarkable piece of national infrastructure. Te Rēhita Mate Ūtaetae, the Breast Cancer Foundation National Register, has been gathering detailed clinical data on patients diagnosed with breast cancer in Aotearoa since 2000.
The Foundation considers the data within the Register a taonga, gifted by patients and held in trust on their behalf. For most of its life, the Register has served research, clinical audit, and health planning. Breast Cancer Foundation wanted it to do more. They wanted clinicians to be able to directly access the data across the entire patient journey in near real time, to help shape diagnosis and treatment for patients to support better and more informed care.
They also wanted to empower and support patients by giving them visibility to their information and enabling them to share their experiences through patient reported outcomes and experience measures. This would enable patients to be involved in clinical decision-making and to help health systems evaluate treatment efficacy and equity.
And lastly, they wanted advanced analytics capability for predictive tools to enable proactive, personalised care. To get there, they needed a modern, integrated platform and the right partner to guide the largest technology investment in the Foundation’s history. In 2024 they engaged CIO Studio.
The Challenge
The legacy system had served the Register well for years, but by 2024 it was holding the Foundation back. It was a retrospective research and clinical audit repository. Clinicians had no direct access. If a clinician wanted to audit their own patients’ outcomes or check who might fit a new clinical trial, they had to go through a data manager. Every request slowed improvement to care.
Behind the scenes the picture was harder. Data managers were manually transcribing hospital records into the Register, one patient at a time. The result was a data lag of around twelve months. The system was painful to report from. Its fields were not SNOMED CT compliant. Its integration footprint was a single connection to the NHI database.
Breast Cancer Foundation wanted transformational change. The goal was to move from full manual data entry to over 80 percent automated ingestion over five years. This would allow the Register to focus on higher-value work like patient-reported measures, and predictive tools such as a New Zealand version of NHS Predict.
As a fully donor-funded organisation, the Foundation knew it had one chance to spend the money for a new system well. The new Register would need to integrate with national health infrastructure, give clinicians and patients secure direct access, and meet a long list of compliance, security, privacy, ethics and Māori Data Sovereignty standards. The team also knew they could not run a procurement of this scale alone.
“This is the most significant investment in the Foundation’s history. The money has been gifted to us by New Zealanders to make a real difference for people with breast cancer. We had to get it right.”
Ah-Leen Rayner
CEO, Breast Cancer Foundation NZ
The Solution
The Foundation already knew of CIO Studio’s reputation in the New Zealand health sector. When the time came to replace the Register, they engaged them to help guide the work.
Their first job was to turn Breast Cancer Foundation’s draft requirements into something the market could respond to. CIO Studio shaped an open Expression of Interest and a full Request for Proposal, then ran both end to end. Independence mattered as the Foundation needed advice that was not tied to any supplier or platform.
The procurement was deliberately rigorous. Over twenty EOI responses came in from local and global vendors, with a shortlist of six taken through to RFP. CIO Studio helped to inform a multi-disciplinary assessment panel that included Health New Zealand, Te Aho o Te Kahu, the Register’s Clinical Advisory Group, patient representatives, and Māori and Pacific representation. Te Tiriti o Waitangi principles and Te Mana Rauranga’s Māori Data Sovereignty principles were built into the evaluation framework.
Shortlisting, scoring, tailored demonstrations, and reference visits followed. After four months of detailed contract negotiation, the Foundation selected their chosen partner.
When the build phase began, CIO Studio brought in a full-time Project Manager. CIO Studio’s core advisors stayed close for technical, contractual, and governance guidance, and the wider CIO Studio network was on call for specialist questions like FHIR API design and Health NZ interoperability.
CIO Studio also distributed the EOI widely, ran consultation workshops, and supported governance work that sat well outside their original scope. They saw the cause and showed up for it.
"CIO Studio brought the discipline we needed for an investment this size. They sat in the technical detail with us, asked the hard questions, and made sure we landed the right partner and the right solution, with a clear plan for delivering it."
Sue Kleinsman
General Manager, Breast Cancer NZ Register Trust
The Outcome
The new Register went live on 30 March 2026, bringing more than two decades of breast cancer data onto a modern, integrated platform. The legacy system was decommissioned in July, after which the Foundation was able to move back to a single cost base, an important step for a donor-funded charity.
Near-live data, not year-old data
The previous twelve-month data lag is closing, with the new platform supporting API-driven ingestion. The first integration with the National Health Index is live and further FHIR APIs are in development through Health NZ’s Digital Services Hub.
Stronger governance and assurance
The build delivered a Privacy Impact Assessment, cloud and security risk assessments, a Māori Data Sovereignty review, new Standard Operating Procedures, ethics approvals, and a full security review by Bastion Security. More comprehensive disaster recovery and continuity plans now exist.
A foundation for what comes next
With phase one business-as-usual on a secure modern platform completed, the Foundation is moving into clinician dashboards, predictive analytics, and patient-reported outcome and experience measures. The longer vision is a learning healthcare system: evidence-based decisions feeding a cycle of improvement, generation after generation.
"Replacing a national register with over twenty-five years of data is not something a small team takes on lightly. CIO Studio gave us the confidence to navigate it, bringing independent expertise, genuine care for our cause, and the rigour we needed at every step. We would not have got there without them."
Ah-Leen Rayner
CEO, Breast Cancer Foundation NZ
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