Cancer agency to improve bowel cancer data

It took 10 months for a Southland family’s lives to change forever.

That’s the time Steph Rossiter had with her mum between her diagnosis and when she became one of the 100 Kiwis who die of bowel cancer in New Zealand each month. ‘‘Once we found out what mum had, we realise it was quite common,’’ Rossiter said.

Next month, Rossiter will join others impacted by the disease for Bowel Cancer New Zealand’s Move Your Butt campaign to honour her mum and raise funds for the organisation that helped her family navigate their cancer journey.

Data delays mean the Ministry of Health can only provide information from 2019, when it recorded 3417 new colorectal cancer diagnoses. Bowel Cancer NZ estimates that more than 1200 of those people have died or will die from the disease. Survival rates depend on how early the cancer is detected and treated, but health officials have admitted they do not have accurate data on how many diagnostic referrals are being turned down; while advocates like Melissa Vining have called the inconsistency of monitoring across district health boards ‘‘distressing’’.

This means the ministry sometimes does not have enough information to make decisions about resources and improvements.

Te Aho o Te Kahu, the Cancer Control Agency, is working to change this.

Chief executive Diana Sarfati said a group of gastrointestinal clinicians and experts would be developing data standards in the second half of 2022.

The work will form part of the agency’s efforts to create Health Information Standards Organisation endorsed data for all cancers.

‘‘Te Aho o Te Kahu is committed to working in partnership with the sector to improve the timeliness, relevance, shareability, accessibility and security of cancer information in Aotearoa,’’ Sarfati said. ‘‘It is critical our laboratory systems collect, report and share the data needed for timely clinical decision-making.’’

The agency released an updated Bowel Cancer Monitoring Report earlier this year, which makes more than 20 recommendations for the agency and DHBs, including standardising monitoring.

The Ministry of Health said it was tackling high bowel cancer rates through the National Bowel Screening Programme (NBSP), which it had rolled out since July 2017. NBSP clinical lead Dr Susan Parry said the programme had detected cancer in 1400 people and removed polyps (growths in the bowel) from hundreds more since.