15 Mar 2018

Ministry had been warned of bowel screening botch-up

7:04 am on 15 March 2018

The Ministry of Health was warned four years ago about a risk that people would unknowingly miss out on a bowel cancer screening programme, but did little about it until late last year.

Health Minister David Clark announced last month that 2500 eligible Waitematā residents missed out on screening under a pilot programme because they'd moved and their addresses were not updated on the register.

Of them, eight went on to develop bowel cancer, although a clinical expert ruled that for five the withdrawal definitely had no effect on them, and it was impossible to prove whether there was any impact on others.

Mr Clark ordered an independent review into the national bowel screening pilot in response to address the failure.

However, documents released to RNZ under the Official Information Act reveal Waitematā DHB warned the ministry about such a failure four years ago.

The DHB stressed in the papers that the register of names underpinning the programme was "owned and maintained" by the Ministry.

It said however that the pilot was an "overwhelming success" with 350 people identified as having cancer and paving the way for the national rollout of screening.

The DHB said that when the pilot began in 2011 it was quickly identified that the register was not linking properly with the National Health Index (NHI).

"The effect of this was that when people moved home address new information, when it became available, was not automatically fed through to the bowel screening pilot's contact register and the opportunity to invite those people to participate was potentially lost."

It said problems with the register were first identified at the end of the pilot's first invitation cycle, in late 2013.

"Waitematā DHB immediately alerted the MOH and there was extensive discussion on the need for a remedy from that point."

It said the issue also was raised in 2012 and twice in 2014 when director of funding for Waitematā and Auckland DHBs Debbie Holdsworth outlined key concerns to the then director of national health IT at the Ministry, Graeme Osborne.

Dr Holdsworth said the issues were:

  • Limited register functionality, resulting in too many areas running on work-arounds which were inefficient and posed areas of risk
  • Lack of timeliness for updates and new releases to address emergent operational issues and meet needs for audit and reporting requirements
  • Analysis of first-screening-round data was compromised by limitations of the register and future rollout of the programme would not be possible within the register in its current state
  • Lack of clarity in the Ministry as to who was responsible for securing the additional funding and coordinating the additional resources required to achieve a robust population database

The DHB said no action followed and a series of resource-intensive workarounds were required by its busy staff to try to contact eligible people for whom they lacked a current address, to invite them for screening.

However, the papers show the Ministry's National Screening Unit was fully alert to the problem in September last year.

In an email to a Waitematā screening boss Gaye Tozer, the unit's bowel screening implementation manager Maree Pierce said "we have become aware of an issue with people possibly being inappropriately withdrawn".

That was followed by a message from Ms Tozer on 30 October last year.

"It is now almost six weeks since you phoned to inform me that people should only be withdrawn from the programme if requested by the person themselves or their doctor."

She added the NSU had raised serious concerns and the DHB was doing as instructed.

Ms Tozer said: "I had expected that you might wish to discuss this matter with us, not least to provide a fuller explanation of why the concerns have arisen, but there has been no further communication on this issue ... instead we have been left worried that our population has been exposed to risk - something which would distress us greatly.

"It is unacceptable to raise an issue of this significance and then to communicate no further."

The DHB's former chairman, Lester Levy, told Dr Clark last November that problems with the register had also been pointed out in mid 2016 in an external independent evaluation of the pilot screening programme.

He said the problems highlighted then included "insufficient dedicated data and IT resources, which contributed to a lack of timely updates to the register. Given the noted limitations of the register, a comprehensive review was strongly recommended together with the implementation of a robust data-quality-assurance programme to support a national programme rollout".

The Ministry said in response to RNZ today, regarding the OIA release, that there was a difference of interpretation between it and the DHB about some aspects of the address-update issue.

"We expect a review we have commissioned will provide clarity around the circumstances that led to 2500 people missing out on an opportunity to participate in free screening and the consequences for them."