20180619 information booklet for upload to web€¦ · ihw indigenous health worker or practitioner...

Information Booklet An Alternative Pathway for the National

Bowel Cancer Screening Program for Indigenous Australians

Information Booklet National Indigenous Bowel Screening Pilot V2.0: (19/01/2018) of 17


Contents About this Booklet ............................................................................................................................. 4

Contact Information .......................................................................................................................... 4

Abbreviations .................................................................................................................................... 4

Ten important facts you need to know about the National Pilot ........................................................ 5

Introduction ...................................................................................................................................... 6

Why is bowel screening important? ................................................................................................... 6

The National Bowel Cancer Screening Program (NBCSP) .................................................................... 6

Indigenous Australians and bowel screening ...................................................................................... 6

What is the Alternative Pathway? ...................................................................................................... 7

A flexible model ................................................................................................................................. 7

What is the National Pilot? ................................................................................................................ 8

What are the benefits of taking part in the National Pilot?................................................................. 8

What does the National Pilot involve? ............................................................................................... 9

How do you apply to take part? ....................................................................................................... 10

Application process ...................................................................................................................... 10

Assessment of eligibility for health centres to take part ............................................................... 10

Randomisation of health centres into two groups ........................................................................ 11

Resources to support health centres ............................................................................................ 12

Planning and preparation phase................................................................................................... 13

Health centre visits ...................................................................................................................... 13

Offering the Alternative Pathway ................................................................................................. 14

Follow up and reporting back ....................................................................................................... 14

Ethics statement .......................................................................................................................... 14

Next steps ....................................................................................................................................... 16

References....................................................................................................................................... 17


About this Booklet In the spirit of respect, Menzies School of Health Research acknowledges the people and the elders of the Aboriginal and Torres Strait Islander Nations who are the traditional owners of the land and seas of Australia. Aboriginal and Torres Strait Islander people are respectfully referred to in this document as Indigenous Australians. This information booklet has been prepared by the Menzies Project Team: Jenny Brands, Christine Long, Anne-Marie Dewar, Georgina Smart and Boden Tighe. Contact Information If you require any more information about the National Pilot, please contact the Menzies Project Team at: [email protected]; by phone: (07) 3169 4240 or by mail at: Menzies School of Health Research, 147 Wharf Street, Spring Hill, Queensland 4000.

Abbreviations

ACCHO Aboriginal Community Controlled Health Organisations

ACCHS Aboriginal Community Controlled Health Services

AIHW Australian Institute of Health and Welfare

AMS Aboriginal Medical Service

CCA Cancer Council Australia

GP General Practitioner

IHW Indigenous Health Worker or Practitioner

NBCSP National Bowel Cancer Screening Program

NCSR National Cancer Screening Register

PHC Primary Health Care


Ten important facts you need to know about the National Pilot

1. Only about 19.5% of eligible Indigenous Australians take part in the National Bowel Cancer Screening Program (NBCSP), compared to 42.7% of non-Indigenous Australians.

2. The National Pilot will allow primary health care centres to distribute NBCSP kits directly to their Indigenous patients aged 50 to 74, helping to address many of the barriers to bowel screening.

3. The aim is to increase the participation rate of eligible Indigenous Australians in the NBCSP. This will be measured by comparing the participation rate generated through health centres in the Pilot with the national estimate of Indigenous participation in the program (19.5%).

4. To take part, health centres need to apply and demonstrate that they can manage relevant quality and safety issues.

5. Up to 50 health centres will be accepted to take part. After a 2-3 month planning and preparation phase, health centres will give out kits to their eligible patients for 12 months.

6. Health centre staff will provide details of screening participation to the NBCSP Register through a secure online SmartForm.

7. The National Pilot provides training opportunities about bowel cancer and bowel screening, and ways of talking about bowel screening with Indigenous patients. This training can be counted towards Continuing Professional Development points.

8. The National Pilot has been approved by Human Research Ethics Committees in the Northern Territory (Top End), South Australia, New South Wales and Western Australia.

9. Health centres will be allocated randomly into one of two groups. Group A will receive a low intensity level of support from the Menzies Project Team, and Group B will receive a more intensive level of support. The main difference is that Group A will not be provided with face to face training at the start of the Pilot, and will not receive visits or phone calls initiated by the Project Team, whereas Group B will receive these before and during the Pilot. Both groups will have access to an online training module, a Helpline, and receive a package of electronic and printed materials that include implementation, training and promotional resources. This randomisation will help assess the level of support needed by health centres of varying size and location.

10. Bowel screening is a highly cost-effective public health initiative, particularly as the costs of treating advanced cases of bowel cancer continue to increase. The NBCSP is expected to save at least 59,000 lives and prevent 92,000 cases of bowel cancer in Australia over the next two decades.


Introduction This booklet provides information so your Primary Health Care (PHC) centre can make an informed

decision about whether to take part in a National Pilot of an Alternative Pathway for bowel

screening for Indigenous Australians.

Why is bowel screening important? Bowel cancer is the second most common cause of cancer-related death in Australia (AIHW 2017). It

is one of few cancers that can be detected in its pre-cancerous stage and if a cancerous growth is

identified early chances of survival are good. Yet often bowel cancer has no clear signs or symptoms

until it has reached an advanced stage; by then the chances of survival are much lower. A bowel

screening test can detect tiny amounts of blood in the poo, which may be a sign of changes in the

bowel. Therefore, bowel screening can make a big difference to the chances of preventing or

surviving bowel cancer.

The National Bowel Cancer Screening Program (NBCSP) The NBCSP offers free bowel screening to Australians aged 50-74. Bowel screening kits are mailed

directly to eligible people who have been identified from Medicare and Department of Veterans’

Affairs records. Health guidelines recommend bowel screening is completed every two years

(NHMRC 2017).

Indigenous Australians and bowel screening Indigenous Australians have lower participation rates in the NBCSP than non-Indigenous Australians

- estimated at 19.5% compared to 42.7% for 2015-2016 (AIHW 2018). If diagnosed with bowel

cancer, Indigenous Australians also have a lower chance surviving five years compared with other

Australians - 57.8% compared with 67.3% (AIHW 2018). This suggests that survival rates might be

improved if bowel cancers were picked up at an earlier stage through cancer screening programs

such as the NBCSP.

Pilot studies conducted by state/territory cancer screening programs between 2008 and 2011

showed that Indigenous participation in the NBCSP might be increased if eligible people were invited

through their local health centre, instead of by direct mail out. The Australian Government

Department of Health (DOH) funded Menzies and a consortium of collaborators to consult, prepare

for and implement a National Pilot of an Alternative Pathway for the NBCSP for Indigenous

Australians. The consultations were held during 2015-2016 and involved more than 250 people

across the country. More than half of those involved were Indigenous people, and a large proportion


were also health care professionals including many Indigenous Health Workers (IHWs). The

consultations overwhelmingly supported an Alternative Pathway via PHC centres as an appropriate

option for Indigenous Australians to access the NBCSP.

What is the Alternative Pathway? The Alternative Pathway provides another way for Indigenous Australians to access the NBCSP for

regular bowel screening tests. The Alternative Pathway builds on the relationship of trust between

Indigenous people and their health centre. PHC centre staff will promote the NBCSP to eligible

Indigenous patients, give out screening kits, and support their patients to participate in bowel

screening.

The Alternative Pathway has been planned to impose as little as possible on busy staff. Health

centres are encouraged to make bowel screening a part of routine practice by including it within

their usual ways of working: for example, by making bowel screening part of the Adult Health Check

(MBS item 715), and/or by setting up reminder systems to flag when a patient should be screened.

The central principle is that health centre staff will talk to their patients on a regular basis about the

importance of bowel screening, and distribute kits directly to eligible patients.

The Alternative Pathway was designed to be implemented with the new National Cancer Screening

Register (NCSR). However, due to the delayed development of the NCSR, an online form has been

developed to allow healthcare providers to electronically send patient information securely and

safely sent to the current NBCSP Register. Results will be provided to patients and health centres,

with all usual reminders for follow-up being triggered from within the current Register (as for NBCSP

participants generally). Eventually the NCSR will house all NBCSP data.

A flexible model PHC centres are all different. State and territory health systems also differ in how they organise

services to support bowel screening (such as follow up colonoscopy services). The consultations for

this project showed that a ‘one size fits all’ model for an Alternative Pathway would not work, so

health centres have the flexibility to work out their own ways of embedding the NBCSP into routine

practice. Health centres may also offer optional support to patients – depending on your available

capacity and competing priorities. Optional support might include:

• offering patients the choice to complete the kit (take the samples) at your health centre

• storing and posting samples on a patient’s behalf

• adding approved materials to the kit such as a colourful sticker with Indigenous artwork


• providing a discrete bag to carry the test kit

• following up patients who don’t complete the test

• local health promotion activities to raise awareness, such as information days, men’s and

women’s group activities.

What is the National Pilot? The National Pilot is an opportunity to test and fine tune the Alternative Pathway to bowel screening

for Indigenous Australians with up to 50 PHC centres. The Pilot will help inform decisions on longer

term feasibility of an Alternative Pathway.

The National Pilot will be open to Indigenous PHC centres, which are defined as:

• A PHC centre with a majority Indigenous patient population; or,

• A PHC centre that does not have a majority of patients who are Indigenous, but has at least

50 eligible Indigenous patients and wishes to make improving Indigenous participation in

bowel screening an organisational priority.

Indigenous PHC centres may include:

• Aboriginal Community Controlled Organisations (ACCHOs) - also often known as Aboriginal

Medical Services (AMSs) or Aboriginal Community Controlled Health Organisations

(ACCHOs)

• PHC centres run by state or territory health services

• Private or corporate general practices

• Other types of PHC services.

The National Pilot will also test whether providing different levels of support to PHC centres that are

introducing the Alternative Pathway affects its uptake by health centres, or the eventual

participation rates in screening. This will provide information about the effect and cost benefits that

different types of support for health centres have on their patients' participation in bowel screening.

What are the benefits of taking part in the National Pilot? Participation in the National Pilot has the following benefits for PHC centres and their patients:

• Staff will receive training about bowel cancer and bowel screening; • Staff will receive information about effective ways for talking about bowel screening with

Indigenous Australians and how to address cultural barriers about bowel screening;


• Participating PHC centres will receive resources including brochures, posters, information

sheets and flip charts to use when talking with Indigenous Australians about bowel

screening; • PHC centres will receive assistance with planning to implement the Alternative Pathway; • Your patients will receive support (through your health centre) to help them participate in

bowel screening; • Most importantly, taking part in the National Pilot will help to implement and test an

approach that aims to contribute to the long-term goal of reducing deaths from bowel

cancer amongst Indigenous Australians.

What does the National Pilot involve? There are six stages of the National Pilot.

1. Application to take part in the National Pilot.

2. Eligibility assessment and randomisation process; offers made to health centres to take part.

3. Planning and preparation phase (health centres get ready to offer the Alternative Pathway).

4. Satisfactory completion of quality and safety hurdle (Quality and Safety Checklist).

5. Health centres authorised to distribute screening kits and offer the Alternative Pathway (for

12 months of the National Pilot).

6. Receive reports on screening participation rates (your health centre and others), and provide

a mid-pilot report on health centre or environmental changes that might affect screening

participation.

7. Follow up (final data collection and training opportunities; data analysis; feedback to health

centres).


How do you apply to take part?

Application process You have received this booklet as part of the application package that includes:

• The Health Centre Profile which is a questionnaire about your health centre, staffing profile, patient and community profiles, that will be used to assess eligibility and establish baseline data for the Pilot. This can be completed online, or downloaded and emailed back.

• A Health Centre Participation Agreement that outlines the responsibilities of your PHC centre and those of the Menzies Project Team. This Agreement needs to be signed and returned to Menzies as soon as possible, once you are satisfied that your health centre wants to take part.

Both documents – the Health Centre Participation Agreement and Health Centre Profile – need to be completed and returned to Menzies at [email protected] July 10.

Assessment of eligibility for health centres to take part Eligibility to take part in the National Pilot will be assessed from the information provided in the Health Centre Profile and followed up with discussions with health centre management if necessary. Eligibility criteria are that the health centre:

• has at least 50 Aboriginal and Torres Strait Islander patients in the eligible age group for the NBCSP (aged 50 to 74) who are active patients under the NACCHO/RACGP definition: A patient who has attended the practice/service three or more times in the past 2 years.1

• delivers at least some primary health care services to Aboriginal and Torres Strait Islander people, and has access to a GP who can assess patients who receive a positive result and refer on to further diagnostic testing if required.

• has internet access, a computer (or similar) that allows health centre staff to submit patient information online to the NBCSP Register, and a printer to print out the Participant Details (Health Service Initiated) form for a patient who accepts an iFOBT kit.

• and can show capacity to: § Incorporate NBCSP screening into routine practice. § Manage potential barriers around timely access to colonoscopy; keep kits and

samples cool; return samples to the NBCSP’s contracted pathology provider. § Ensure staff have the skills and knowledge to offer the Alternative Pathway and to

support participants who receive a positive test (training will be available through the National Pilot).

1 Source: Glossary, Interpretive Guide to the RACGP Standards for Aboriginal community controlled health services, Online at racgp.com.au


Health centres would be excluded from taking part if they have:

• No secure and cool storage for NBCSP screening test kits. • No access to internet, computer or printer. • Insufficient access to appropriate primary care staff, for example, no access to a GP to

assess patients who receive a positive result • No way to establish bowel screening into routine practice.

The existence of an electronic Patient Information Record System (PIRS), or use of systems like Medical Director and Communicare, will make it easier for health centre to ensure that eligible patients are invited to screen at the appropriate interval. A health centre with a paper-based record system could still establish routine procedures for NBCSP screening, but would need to demonstrate their capacity to do so.

Health centres deemed to be eligible will then be randomised into Group A or Group B. The application and randomisation process will also ensure that the 50 health centres selected reflect the diversity of Indigenous PHC centres.

Randomisation of health centres into two groups Fifty (50) health centres will be randomised into two groups:

• Group A (lower-intensity preparation support) or • Group B (intensive preparation support)

Your health centre could be randomised to either of these two groups (Group A and Group B). Both groups will be provided with the same set of resources and materials, which have been designed to assist health centres to plan and train for, and to implement, the Alternative Pathway.

If your health centre is randomised to Group A, you will use the resources and materials you’ve received to prepare to implement the Alternative Pathway.

If your health centre is randomised to Group B, you will receive the same resources and materials, and will also be offered additional face to face training, a facilitated session to plan how to introduce the Alternative Pathway, and onsite support for 1-2 days – before offering the Alternative Pathway to patients.

Health centres in Group A will have access to the additional training and facilitated planning opportunities at the end of the National Pilot (12 months after commencement).

Staff who have been involved in preparing or training to implement the Alternative Pathway at each site will also be asked to provide feedback, through questionnaires or an interview, about the materials, training and overall approach.


Resources to support health centres Once a health centre is accepted to take part in the Pilot, the Menzies Project Team will send

notification of acceptance and provide a package of implementation materials and resources. These

include:

• The Alternative Pathway in your PHC Centre. This is a detailed manual that steps you

through all aspects of the National Pilot and Alternative Pathway.

• An Online Training Module. The module has information about bowel cancer and bowel

screening, the NBCSP and the Alternative Pathway to help increase the knowledge of your

staff. It includes short animations to help prompt staff to discuss issues around talking

about bowel screening with Indigenous patients.

• Other resources to help prepare staff to offer the Alternative Pathway, including information

sheets for GPs and IHWs about why bowel screening is important for Indigenous patients,

and some guidance on ways to talk about bowel screening with Indigenous patients; a flip

chart; and links to a variety of online resources.

• Resources for use in talking with Indigenous patients about bowel screening, and to raise

awareness of bowel cancer and bowel screening. The resources include brochures, posters,

a flipchart and music video-clips.

• A Quality and Safety Checklist. This checklist will help you to consider the quality and safety

risks for your health centre and/or patients in participating in the Pilot, and demonstrate

how you will manage these risks. The Quality and Safety Checklist (Q&SC) is important for

making sure patients are well supported not exposed to any additional risks than those that

they would be if completing the NBCSP kit through the usual pathway. The Checklist must be

completed and returned to the Menzies Project Team in order for health centres to offer the

Alternative Pathway to patients. The deadline for satisfactory completion of this checklist is

likely to be mid-September or early October; the date will be confirmed with the

implementation and resource materials package.


Planning and preparation phase Health centres will have time to prepare to offer the Alternative Pathway and to submit the Quality and Safety Checklist. This might include:

• Planning exactly how to implement the Alternative Pathway.

• Completing the Quality and Safety Checklist to demonstrate that strategies are in place to

manage any risks that might occur as a result of the Alternative Pathway.

• Preparing staff to offer the Alternative Pathway, using training materials and opportunities

offered by the National Pilot.

• Putting in place any changes in day to day procedures needed to implement the Alternative

Pathway, for example: changes to the Adult Health Check or other templates; reminder

systems; procedures for management of kits.

• Identifying all eligible Indigenous patients (aged 50 to 74).

• Planninga quality improvement activity around the introduction of bowel screening.

• Communicate with community members about the National Pilot and the Alternative

Pathway.

• Connect with other relevant organisations (such as Primary Health Networks, Cancer

Councils or state/territory health services) to talk about coordination and collaboration

around bowel screening and the follow up procedures.

Health centre visits The Menzies Project Team will visit all health centres during the National Pilot.

When will this happen?

• During the Planning and Preparation Phase – for health centres in Group B (which are

offered the intensive preparation support).

• At the end of the Pilot – for health centres in Group A (which were offered the lower-

intensity preparation support).

What happens during the visit? Depending on the timing and what suits your health centre, the visit will provide an opportunity to:

• Talk about planning to implement the Alternative Pathway at your health centre

• Prepare staff to offer the Alternative Pathway by making use of face to face training options,

which include workshops, one on one or small group formats.

• Review progress and consider how to address particular local barriers to bowel screening.

• The Menzies Project Team will want to interview staff who will or have taken part in the

National Pilot individually or in groups about how useful (or not) the planning tools and


activities have been; whether the Alternative Pathway will work for your patients and how

you might put the Alternative Pathway into place at your health centre.

Offering the Alternative Pathway Once a health centre has completed the Quality and Safety Checklist to a satisfactory standard, staff

will be authorised to order and distribute kits. This will continue for 12 months. During this time,

health centres will be asked to complete a mid-pilot report. The Project Team will also provide

reports back to health centres about the number of patients who have completed the test.

Follow up and reporting back At the end of the 12 months in which health centres have been offering the Alternative Pathway, the

Menzies Project Team will visit all health centres to carry out interviews with participating staff, and

to provide a preliminary report back to health centres about the results of the National Pilot. During

this time, health centres in Group A (the low intensity support group) will have the opportunity to

take part in training or implementation activities offered to Group B health centres before the

National Pilot.

Ethics statement

Menzies School of Health Research is committed to researcher integrity and the ethical conduct of

research projects.

This project has been approved by the following Human Research Ethics Committee (HREC) under

the formal title: Alternative Pathway for the National Bowel Cancer Screening Program for

Indigenous Australians: A cluster randomised trial of implementation models:

• Human Research Ethics Committee of the Northern Territory Department of Health and

Menzies School of Health Research (HREC reference #2017-2717);

• Aboriginal Health & Medical Research Council NSW (HREC reference #1247/17);

• Aboriginal Health Research Ethics Committee SA (HREC reference #04-17-711); and

• Western Australian Aboriginal Health Ethics Committee (HREC reference #763).

Additional ethics approvals will be obtained if required once health centres register their interest in

taking part in the project. Please let the Menzies Project Team know if additional local ethics

approval may be required at your site.


If you have any concerns or complaints regarding the ethical conduct of the study, you are invited to

contact Ethics Administration, Human Research Ethics Committee of the Northern Territory

Department of Health and Menzies School of Health Research on 08 8946 8687 or 08 8946 8692 or

by email: [email protected]


Next steps If you are satisfied that you want to go ahead with the National Pilot at your health centre,

please:

1. Complete the Health Centre Profile. You can fill in the Health Centre Profile online

at https://www.indigenousbowelscreen.com.au, or download it and email or mail it

back.

1. Complete and sign the Health Centre Participation Agreement. This will need to be

downloaded to be completed. You can scan and email it back, or mail the printed

copy.

Email address: [email protected].

Mail to: Menzies School of Health Research, 147 Wharf Street, Spring Hill, Queensland 4000.

Interested but not sure? If you want more information about the National Pilot, please contact the Menzies Project

Team online by email: [email protected] or via the Contact Us link on the

bowel screen website: https://www.indigenousbowelscreen.com.au.

Or call (07) 3169 4240 to talk to the Menzies Project Team.

Not able to take part (at this stage) or not interested? If you’d be willing to spend a couple of minutes expressing your reasons via the ‘Contact Us’

link on the Indigenous Bowel Screening website:

https://www.indigenousbowelscreen.com.au, or by talking to one of the Menzies Project

Team members, it would be very useful to hear about the reasons that health centres decide

not to take part. This would help to inform the National Pilot about whether there are

particular types of health centres for which there are too many barriers to offer the

Alternative Pathway, or whether the randomisation of health centres to Group A or B has

discouraged any health centres from taking part.


References Australian Institute of Health and Welfare 2017. Cancer in Australia 2017. Cancer series no.101. Cat. no.CAN 100. Canberra: AIHW.

Australian Institute of Health and Welfare (2014). Analysis of bowel cancer outcomes for the National Bowel Cancer Screening Program. Cat. No. CAN 87. Canberra: AIHW.

Australian Institute of Health and Welfare (2018). ‘Cancer in Aboriginal & Torres Strait Islander people of Australia’, Accessed 15/3/2018 at https://www.aihw.gov.au/reports/cancer/cancer-in-indigenous-australians/contents/cancer-type/colorectal-cancer-c18-c20

Menzies School of Health Research (2016). Phase One Report, National Indigenous Bowel Screening Project (unpub). Commissioned by Australian Government Department of Health.

National Bowel Cancer Screening Program. 'About the program', Accessed 31/10/2016 at http://www.health.gov.au/internet/screening/publishing.nsf/Content/about-the-program-1

National Health and Medical Research Council (2017). Clinical Guidelines for Prevention, Early Detection and Management of Colorectal Cancer. Accessed 19/1/18 at https://wiki.cancer.org.au/australia/Guidelines:Colorectal_cancer

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