Table 5 Survey results of draft recommendations, with responses

1. That Aboriginal and Torres Strait Islander women are consulted in the formation of policy

(Much of the policy has no mention of the difference in outcomes for Aboriginal women and therefore does not address needs of Aboriginal and Torres Strait Islander women)

No comments

Consensus reached.

2. Screening for breast cancer is free and accessible at an earlier age.

(Aboriginal and Torres Strait Islander women are more likely to be diagnosed at a younger age than non-Aboriginal and Torres Strait Islander women)

Does earlier screening result in better outcomes or result in increased adverse effects of screening: detection of indolent cancers; increase burdens associated with diagnosis. Have they been appropriately assessed with Aboriginal and Torres Strait Islander women?

According to evidence that has been gathered relevant to early detection of breast cancer for Aboriginal and Torres Strait Islander women, there has only been one paper found in the grey literature that reports on proportion of recalled cases, leading to the assumption this has not been extensively examined. There is evidence, however, that Aboriginal women are more likely to be younger at diagnosis.

Further research needed about the age to commence screening for Indigenous women although it was agreed that earlier screening was likely to be beneficial.

3. That women with symptoms are not discouraged from attending Screening

(Current policy is that women with symptoms do not attend screening; however, for a group that has under-representation in screening, it is vital that they are welcomed to screening or given a clear alternate pathway via policy)

There are very good reasons for this: no diagnostic workup equipment/no doctors present. However examination of how this issue can be handled in remote areas should be closely examined

Acknowledging that there are good reasons to dissuade those with symptoms from attending screening, we still believe that the message that this policy conveys is problematic from the point of view of those that experience more barriers than the majority of women in Australia. That the policy simply states what not to do, without explicitly stating the other options means it acts as a deterrent.

Agreed that Indigenous women should not be dissuaded from attending screening and should have a clear pathway to care should they have symptoms. Consensus not reached on the recommendation itself.

I agree with the second part of the statement - that women with symptoms are welcomed and given an alternative pathway via policy. But don’t agree they should screen anyway as the screening program is designed for asymptomatic women and women with symptoms need a different approach.

The current National screening programme is geared towards women of low risk. I think Aboriginal and Torres strait Islander people should have an alternate pathway. When examining the different state’s Breastscreen organisations there are better systems for implementation to help with compliance specifically for Aboriginal and Torres Strait islander women (look at Victoria and NSW). Maybe these state by state approaches need to be harnessed for a standardised nation approach for this at-risk population ?????

4. It is not enough to acknowledge the barriers for Aboriginal and Torres Strait Islander women and not address them or provide appropriate solutions

(Several polices refer to the specific barriers faced by Aboriginal and Torres Strait Islander women, however, there are no official policies to deal with these barriers)

Unsure how a policy addresses the barriers but happy to learn. generally it requires great flexibility and often creativity to adapt guidelines to suit individual circumstances

The concern is that if policy does not address barriers, then health practitioners are not provided solutions, nor are they beholden to them. Adapting guidelines is fine but as the name suggests, guidelines are to guide, they are not a mandate. As defined in our Review process, a policy is: A publicly available statement of intent or expected practice that is not negotiable and requires mandatory compliance (with consequences if not complied with). Our definition of guidelines would be significantly different. If we have an alternate pathway for Aboriginal and Torres Strait Islander people, then it should be made into a policy, not simply a system of implementation.

Agreed that the national policy level can learn from state-based guidelines. Consensus reached that policy must provide solutions.

The current National screening programme is geared towards women of low risk. I think Aboriginal and Torres strait Islander people should have an alternate pathway. When examining the different state’s Breastscreen organisations there are better systems for implementation to help with compliance specifically for Aboriginal and Torres Strait islander women (look at Victoria and NSW). Maybe these state by state approaches need to be harnessed for a standardised nation approach for this at-risk population ?

We agree that the national screening program needs to be adapted to better suit the needs of all women, not just low risk women. It is also true that there are variations in state approaches, however policy takes place at the national level and therefore this is where the change needs to be mandated. If we could learn from states that are better adapted at the guideline level and translate it into national policy, this would be ideal.

5. Policy should not be based on assumption of adherence to guidelines by the consumer

(One of the policies states: “To be effective on a population basis, a high compliance rate of attendance of women in the appropriate age range for screening mammography is necessary”)

This is simply a global public health policy statement. Having worked in the public health industry I do not read this as meaning the women will come forward without multiple levels of health promotional strategies

We believe it is not enough for policy to be based on resources brought forward by the consumer. This is not realistic and particularly so for those who are underrepresented in the system. While it might be a global public health statement, it has been incorporated into a policy, thereby transferring responsibility to the consumer.

Policy must inform health practice, not depend on the responsibility of the consumer.

The statement, and explanation and both dependent on a clear definition of ‘effectiveness’.

The definition of ‘effectiveness’ as stated by the policy: “Where screening mammography has been provided in an organised and systematic manner it has been shown to be effective in decreasing mortality from breast cancer by around one third to a half in women over 50 years of age who regularly attend.” Again, this definition is reliant on the consumer bearing responsibility.

Agree, and would like to see policy put in place to support increased participation across the system rather than making it an individual responsibility or issue of ‘compliance’. Most women when asked would like to screen, it is just that other things are a higher priority or create barriers to screening

Agree

This talks to public funding of a screening program- screening for aboriginal women should not have the same KPIs as non aboriginal women when it comes to funding

The aim of this review is to incorporate the needs of Aboriginal and Torres Strait Islander into nation-wide policy. We believe that developing separate KPIs risks not capturing the needs of other minority groups, and also has the potential to lower expectations when it comes to Aboriginal and Torres Strait Islander women and ‘others’ the women. It’s possible to do but hard to achieve unless there is a conscious decision/effort.

Particularly for this group

Agree