Bowel Cancer New Zealand says failing to give family doctors their patients' full bowel screening results could lead to unnecessary deaths.
Spokeswoman Mary Bradley said the organisation was deeply concerned the National Bowel Screening Programme has decided not to consult primary care on results reporting as recommended by last year's Independent Assurance Review of the programme.
The review panel heard concerns about the initial screening test for blood in faeces being routinely communicated to participants and their GPs as positive or negative, rather than showing the actual amount of blood found.
A positive Faecal Immunochemical Test (Fit) in the programme is one where the amount of blood found has reached the threshold required to trigger referral for a colonoscopy, but a negative test does not necessarily mean no blood was found.
The panel noted it may be of benefit for GPs to receive the detailed results so "they can support the appropriate management of individuals presenting with symptoms''.
Bowel Cancer NZ wants GPs given the results as a matter of course.
Those concerned about the results reporting are aware the national programme will pick up fewer cancers than the Waitemata District Health Board pilot.
Only 62% of the people found with cancers in the pilot programme would have had them detected if the higher age range and less sensitive blood/faeces test of the national programme had applied. *
Despite being advised by the Ministry of Health that the results issue had been considered extensively, the review panel recommended further consideration of the matter in consultation with primary care.
Documents released under the Official Information Act show the NBSP governance group considered the panel recommendation last September. It said the issue of GPs getting full results had been thoroughly considered and there would be no benefit to consultation.
In response to questions about this, the Ministry's Population Health and Prevention deputy director general Deborah Woodley described the issue as a policy decision requiring specialist bowel cancer screening and population health subject matter expertise outside the domain of general practice.
Reporting results as positive or negative was in line with international best practice, the advice of the Bowel Screening Advisory Group and the National Screening Advisory Committee (both of which included general practice representation.)
Ms Bradley said this decision by the NBSP was ``completely at odds with David Clark's statement when the report was released, that the ministry had `committed to implementing the recommendations' of the panel''.
"We are now left to wonder what the point of this review was if the NBSP are going to pick and choose what recommendations they will implement.''
Dr Clark has distanced himself from the decision not to consult.
In response to questions, he repeated the ministry stance on results reporting. He noted the recommendation of the panel was not in the report's formal recommendations. When the relevance of this was questioned, given OIA material from the ministry showed both recommendations in the formal list and in the body of the report were considered by the NBSP, his office did not respond.
After being alerted to the NSBP decision on consultation, medical director of the Royal New Zealand College of GPs Dr Richard Medlicott is arranging to meet clinicians from the programme to discuss this.
In an interview, he said the results issue was not one which members had been raising with the college, although he acknowledged with more than 5000 members, there would be differences of opinion on the matter.
The NSBP had primary care representation built into it, but looking at the panel recommendation, he questioned why the programme had not "come back for that opportunity for feedback''.
Understanding risk was difficult and the nature of screening was that there was no guarantee it would detect all disease. People should not ignore symptoms.
Although Dr Medlicott's patients are not yet included in the screening programme, he said he would personally prefer the negative or positive reporting - conversations around screening were nuanced and difficult enough without "another complication in the mix''.
It was possible there could be cases where patients presented with symptoms where if the blood/faeces result was known, it might either give reassurance that watching and waiting to see if symptoms resolved was appropriate or increase the urgency of referral.
The NSBP developed an "exceptions'' process last year for participants to request their full results, but no publicity appears to have been given to this. Only two people sought their results last year.
Repeated questions about what information is given to participants and GPs regarding this process are yet to be directly answered by the screening programme.
Ms Bradley said the process for participants to get their results was involved and "all hinges on people knowing they have the right to request this information''.
Another organisation with ongoing concerns about results reporting, the Federation of Women's Health Councils, wants clear information given to participants about how to freely access their numerical results if they want to - information they were entitled to under the Health Information Privacy Code.
Co-convener Barbara Robson said it was disappointing the process for such access did not appear to be available on the National Screening Unit website. It was not known if information sent to participants had been updated to include this and if not, this should be rectified immediately.
Given the national programme's higher cut-off level to trigger a referral to colonoscopy and the likelihood of more false negative results, compared with the pilot, GPs must also be provided with the full numerical results so they could manage their patients' care should there be any symptomatic investigation required between screenings.
"It is extraordinary that the NBSP seems to be saying this additional information is outside the domain of general practice as it is not in line with international best practice for screening programmes.''
The Federation expected GPs and practice nurses to be well informed about bowel screening and well-placed to answer participants' questions.
Ideally, the new information technology system being developed for the NBSP, should be configured to allow the numerical results to go directly from the laboratory to GPs and into patient portals.
"International best practice needs to realign its thinking to what new digital technologies are enabling in terms of patient access to their information and improved health literacy and self-management. Screening doesn't exist in isolation. It is part of a continuum,'' Ms Robson said.
*The bulk of cancers found in the pilot programme followed initial screening results higher than the national screening threshold of 200ng Hb/ml. However, figures from the screening programme published in the Otago Daily Times in 2017 show in the first two-year screening round of the pilot, 33 people who returned readings between the pilot level of 75ng Hb/ml and the less sensitive national threshold were found to have cancer. This was about 15.4% of the total number of cancers found in that round.
Of the 29 cancers where the stage of cancer was known, eight were at the more serious end (stages 3 and 4) and 21 of them were stage 1 or 2, considered early-stage cancers.
On privacy grounds, the programme refused to release details which would show the actual readings at which each of the 33 cancers were found. It did say, however, that 13 of the cancers (almost 40% of the 33 cancers) were found at the lower end of the readings, in the 75ng-99ng range.
How can participants get their actual Fit reading?
The result may be sought directly from the laboratory by a GP at the request of the National Bowel Screening Programme participant. Ministry of Health Population Health and Prevention deputy director general Deborah Woodley says this assumes the participant has a GP and ‘‘can afford any resulting consultation charges’’. Last year, an ‘‘exceptions process’’ was developed for the programme’s National Co-ordination Centre (NCC) to manage any requests from participants seeking numerical results. (The NCC is the operational hub of the bowel screening programme, sending out invitations and test kits and co-ordinating processing and follow-up of test results, sending out letters to participants and GPs and informing DHBs of positive Fit tests.)
The NCC encourages participants to discuss such requests with their GP. However, where a participant does not have a GP, the NCC will arrange for the Ministry of Health to provide the result. Once a request is received, the NCC sends the request to the National Bowel Screening team based in Wellington. The numeric result is obtained by a
public health physician and reviewed by the NBSP’s clinical director Dr Susan Parry. Following the clinical review, the participant receives the result in a letter signed by Dr Parry. Where the participant has a GP, the result is sent to the GP as well. Last year the exceptions process was used twice, once in the North Island and once in the South Island.
What are Faecal Immunochemical Test (Fit) thresholds?
- Programme participants are referred for colonoscopy if traces of blood in their initial poo test reach a set threshold.
- National bowel screening programme threshold: 200ng haemoglobin/ml buffer solution.
- Waitemata pilot programme: 75ng Hb/ml buffer — those already in the pilot have now moved to the national programme, using the less sensitive threshold.
- ng = A nanogram, which is equal to one-billionth of a gram.
