August 2016

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Dementia Awareness Month, 1 - 30 September 2016

The purpose of Dementia Awareness Month is to encourage Australians to become dementia-aware, have a better understanding of what it is like for a person to live with dementia and ultimately be encouraged to create communities where people with dementia are supported to live a high quality of life with meaning, purpose and value.

The theme for 2016 is "You are not alone" and the main activities will be a series of seminars with international and local dementia experts and key note speakers.

One event not to be missed is International action on dementia on Monday 19 September at NSW Parliament House with international presenter Dr Ron Peterson, director of the Mayo Clinic Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging, both of which involve the study and characterisation of aging individuals over time with an emphasis on neuroimaging and biomarkers.

For a full list of happening across the state, visit the Alzheimer's Australia NSW website or download the calendar.

Personal and consumer stories
Life after a cancer diagnosis

Warren shares his story about life in the long shadow of cancer - first detected in the bowel and later spreading with a vengeance to the brain and lungs. He urges men to stop ignoring health issues — particularly symptoms of bowel cancer. 
Patients as partners: How Phyllis is bringing the patient perspective to future doctors

Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. She tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program  to help the next generation of doctors better understand the patient perspective. 
A letter to the urgent care doctor who rolled his eyes at me

Katlyn Simon gives some sound advice to other health consumers when seeking treatment at Emergency with a rare, chronic illness.

Planning hospital discharge with the patient

Dr Maren Batalden demonstrates how she's come to learn that the best health care is always co-produced.
News and current affairs

Time to match health care with the consumer needs of the 21st Century

Health and consumer leaders have released a blueprint for 21st Century Medicare aimed at giving patients greater say in a team-based health care system.

The report resulting from an expert Roundtable in July recommends stepping up Federal Government Health Care Home plans in order to drive a fundamental shift in Australia’s health services toward patient-focused, community based health care “hubs” coordinating care.

The hubs, integrated with hospitals, specialists, allied health and community-based services would offer a one-stop shop, providing patients with more individualised attention including on-line access to their own health information, tests and appointment bookings.

The Roundtable was hosted by the Consumers Health Forum of Australia, the Royal Australian College of General Practitioners (RACGP), The George Institute for Global Health and the Menzies Centre for Health Policy.

In a joint statement released, the Roundtable group has urged Federal, state and territory governments to expand and accelerate development of the existing Health Care Homes project, planned to trial coordinated care for chronically-ill patients in up to 200 sites.

Read the joint media release

Download the report


Pharmacy review: where is it headed?

In this Croakey article, health policy expert Dr Lesley Russell gives the low-down on the Pharmacy Review announced earlier this month:

The 6th Community Pharmacy Agreement (CPA) required a review of pharmacy remuneration and regulation. Key drivers for this were the ongoing debates about pharmacy location rules, pharmacy ownership and whether pharmacies should be allowed within supermarkets. These issues were also addressed in the National Commission of Audit and the Harper Competition Policy Review.

The Pharmacy review, chaired by Professor Stephen King, got underway in November 2015. Now, after a series of meetings with key stakeholders, and a delay caused by the federal election, a discussion paper has been released.  The final report is due by March 2017.

The paper poses 132 questions for which the panel is seeking responses. The preface to the paper states that this is for what is “primarily a consumer-focused review that aims to identify which services and programs that consumers value from community pharmacy” and that the review panel will also consider “any future arrangements in the context of the long term sustainability and equitable distribution of the PBS as a government funded “community resource””.

It is interesting that these broad foci have emerged from the much more specific requirements of the terms of reference. The patient focus is heartening; there are many interpretations of the second statement – not all of them benign – especially given the ideologies of the Coalition Government.

This is a summary of the key issues in the report, with a focus on those that relate to consumers and primary care.

Read more

Quarter of chronically ill Australians skip treatment due to medical costs

One quarter of chronically ill Australians are skipping healthcare because of prohibitive medical costs, with those suffering from mental health conditions such as depression and anxiety most likely to forfeit care.

The finding comes from research led by James Cook University in Queensland that examined the chronic health conditions associated with the highest out-of-pocket costs and whether those costs prevented people from accessing treatment.  The Guardian's Melissa Davey reports.

Medicines to treat side effects of other medicines? Sometimes less is more beneficial

The article from The Conversation sheds light on the medicine use of older people, some of which are no longer working, have been prescribed to treat the side effects of other medicines, or they may have difficulty taking the medicines. Reducing these inappropriate and unnecessary medicines in older people is one of the most important challenges of modern medicine. Read article.
Medicare, PBS data release a healthy step says Consumers Health Forum 

The release of de-identified health data offers great potential to advance research showing how Australia can deliver better health care more cost effectively, the Consumers Health Forum says.
The Department of Health has released one billion items of Medicare and Pharmaceutical Benefits Scheme records which will facilitate research into the performance of the health system.  The release will enable researchers to study linkages between Medicare and PBS claims for a random 10 per cent sample of Australians. Read CHF media release.
Wearable health technologies: better health for all or new ways to confuse, confound and exclude?

Will wearable technologies be all they promise for our health and wellbeing? And will they be accessible, meaningful and appropriate for all of us? Not on the evidence to date, which tells us that these technologies are focused on devices like the Fitbit that appeal to the ‘white, well, and worried’ and not to those who might really benefit. Marie McInerney explains.

NSW Government to collaborate with United States on cancer research

Scientists from the US National Cancer Institute will work with two Sydney-based research organisations on the "Cancer Moonshot" initiative, announced by US President Barack Obama in January this year, which aims to accelerate cancer research. Read SMH article.
Have your say
Have your say: Review of Pharmacy Remuneration and Regulation
Here is your chance to have a say on the Pharmacy Review and Discussion Paper mentioned above.

You have the option of logging onto the national interactive live webcast, sending a formal submission via email or post, and completing the online survey which is now open.
  • To register your interest in attending the national webcast on the evening of Wednesday 7 September, please email the Review Secretariat with your name and affiliation (eg. pharmacist or consumer).
  • Formal submissions can be lodged by Friday 23 September. Email to: or forward to: Pharmacy Review (MDP 900) Department of Health GPO Box 9848 Canberra ACT 2601.
  • A short online questionnaire is also now available for pharmacists and members of the public to respond to a selection of core issues raised in the Discussion Paper. Survey closes Friday 30 September, 2016.
Expressions of interest: The ACI Consumer Council
The Agency for Clinical Innovation (ACI) is inviting expressions of interest from people wishing to sit on the ACI Consumer Council.
The ACI works with clinicians, consumers and managers to design and promote better healthcare for NSW.  The ACI Consumer Council provides expert advice to the ACI and its Board on consumer engagement strategies and represents consumer members of ACI Networks, Taskforces and Institutes.
The ACI is keen to appoint new members to the Consumer Council that can represent the diverse interests of the NSW community.
Membership involves attending up to five 2-hour meetings per year at the ACI office in Chatswood, for a term of 2 years with the opportunity to nominate for reappointment for a further 12 months.  The positions are unpaid but the ACI will organise any travel and reimburse any costs associated with attending meetings and participating on the Council.
There are currently 3 vacancies available.  If you are interested in joining the ACI Consumer Council, please review the Fact Sheet and Terms of Reference and complete the Application Form by Thursday 15 September, 2016.

Applications can be submitted via email (preferred) or post – details can be found on the Application Form.
The successful applicants will be appointed by Wednesday 26 October and will be invited to attend their first ACI Consumer Council meeting on Wednesday 9 November.
If you would like to discuss the above further please feel free to contact Sarah Barter at ACI, who is also available to assist people in completing the application form as needed.
Sarah Barter - Acting Manager, Patient Experience and Consumer Engagement, 02 9464 4684 /

The Institute of Health and Biomedical Innovation (IHBI), Queensland University of Technology (QUT) is conducting important research on how Australian consumers use antibiotics. If you are a member of the general public aged over 18 years and living in Australia, IHBI would like to hear from you!

Your participation contributes to informing the development of public health campaigns and clinical resources, in alignment with Australia's National Antimicrobial Strategy 2015-2019.

There are TWO different areas being investigated and you are invited to complete a survey for BOTH topics:
  1. How do you make DECISIONS about antibiotics in the context of a GP appointment? (chance to win a grocery voucher) - closes Friday 30 September
  1. How do you USE antibiotics? (donation to charity will be made)         - closes Monday 31 October
Each survey will take no more than 15 minutes to complete.

If you would like more information on either study, please contact Katie using the details below:

Dr Katie Page Senior Research Fellow 07 3138 6180 or

The IHBI looks forward to your responses on this important topic.
Resources and events

Australian Institute of Health Information (AIHI) Seminar

"Evolving models of health consumer and community engagement in the Australian Health sector"

HCNSW invites you to an upcoming a seminar presented by our Consumer Engagement Manager, Serena Joyner, as part of the AIHI Seminar Series 2016. See below Abstract for a description of the seminar.
When: Thursday 8 September, 12.00pm - 1.00pm
Where: Seminar room, Level 1, 75 Talavera Road, Macquarie University
Cost: The seminar is free and open to the public.



“Having active and informed consumers as equal partners in decision-making processes at all levels of the healthcare system is … the central concept for both consumer engagement and patient-centred care" (Australian Commission on Safety and Quality in Health Care).

Health consumer participation and community engagement often means different things to different people. Across Australia, health services are finding some guidance through the national standards that more specifically identify how clinical services should be engaging with consumers. Fresh approaches are emerging through the championing of co-design and co-production, as well as the imperative for primary health networks to employ commissioning to provide regionally responsive services.

The Health Consumers NSW/WentWest Consumer and Community Engagement Model aims to provide scaffolding for each of these approaches and is being used by health services (and other care and community sectors) to design, implement or strengthen engagement programs. We are actively looking at how this model can support organisations seeking to engage effectively with consumers through the approaches listed above.

23rd Genetic Disorders Awareness Week Launch

You and your partner are invited to the next Genetic Disorders Awareness Week Launch.

"Australia patients and families' perspectives on genome sequencing: survey results, translation and implications."

When: Wednesday 7 September, 5.45pm - 8.30pm (drinks and canapes will be served 6pm-7pm)
Where: Strangers' Dining Room - NSW Parliament House, 6 Macquarie Street Sydney.

Download the flyer

RSVP by Thursday 2 September.

For more information, contact Genetic Alliance Australia on 02 9295 8359.

MNCLHD 2016 Rural Innovation and Research Symposium, 15-16 September

The Mid North Coast Local Health District (MNCLHD) is recognised for innovation in healthcare delivery, research and communications. Their vision involves collaboration with existing and new partners – health care providers, academia and the non-health sector, working together to deliver an efficient and responsive health care system to our community.

The Rural Innovation and Resarch Symposium will be held on Thursday 15 and Friday 16 September 2016 at the Opal Cove Resort, Coffs Harbour and will showcase how innovation and research is embedded into our everyday work practices.  

The focus is on creating a connected health environment – One Health System For You.  The Symposium will showcase innovation, research and programs that support Integrated Care,  communication, connectivity and access to services across the health spectrum.

Visit the event website for more information and to register.

Mingauge App

Now it's quick and easy to assess and track your well-being with a new app created by researchers at Black Dog Institute, University of New South Wales and University of Sydney. 

With simple research-based quizzes and tools, Mindgauge helps you track your mood and lifestyle, so you can move towards a healthier happier you.


4th NSW Aged Health Collaborative Forum

This year’s NSW Aged Health Collaborative Forum will showcase collaboration in the care of older people. The event is for health professionals, consumers and managers who can lead and influence collaborative change.

When: Friday 14th October,  9.00am - 4.30pm
Where: Westmead Education Conference Centre - Level 2, Education Block, Westmead Hospital, Cnr Hawkesbury Road and Darcy Road, Westmead
Cost: FREE

Register now 

For further information please contact: Glen Pang (Aged Health Network Manager ACI): / 02 9464 4630.
Women's Health Week 2016
Women’s Health Week 2016 will run from 5 to 9 September 2016, with an innovative mix of digital education and engagement supported by community led women’s health events across Australia.
This is Jean Hailes for Women’s Health’s fourth national health promotion campaign, aiming to encourage women to focus on their health and wellbeing.

The campaign has a three-fold approach, seeking to:
  • raise awareness of the importance of maintaining good health and preventing future health problems
  • ensure women across Australia are aware of the health services in their local community
  • encourage personal responsibility as part of a focus on prevention
Visit the campaign website, to:
  • register to host an event
  • participate in the online campaign and receive evidence-based health content for each day of Women’s Health Week, and
  • help promote the campaign.
14 questions to ask before you enrol in a clinical trial

People who are in a clinical trial or are thinking about joining a clinical trial have the right to ask the study staff any questions they may have about the study.

The Center for Information & Study on Clinical Research Participation have produced a printable version of useful questions for patients, potential study volunteers and their family members or friends, to ask the research staff – which can include doctors, nurses, study coordinators and other people who help conduct the trial.

Download a copy of the useful questions.

Patients as partners: Building collaborative relationships among professionals, patients, carers and communities

The Kings Fund has released a guide, Patients as Partners, set out to help build more collaborative relationships in healthcare in the UK. The guide stems from an evolving body of the fund's work focused on exploring and supporting shared leadership.

This work is reinforced by a growing consensus that health services, agencies, patients and communities need to work together more – and differently.

Download the full guide.
Get certified in Consumer Engagement - guest speakers confirmed

We have the privilege of booking some amazing guest speakers for our upcoming Graduate Certificate in Consumer and Community Engagement course.

Professor John Macdonald - University of Western Sydney’s Director of Men’s Health Information and Resource Centre ‘Community development, community participation and health promotion:  principles and practices’
Christian James - Deaf Society’s Customer Service Advisor
‘Social inclusion and diversity in the community: principles and practices’
Lynda Johnson SWSLHD’s Consumer and Community Participation Manager, and Sharon Smith
SWSLHD Health Consumer Representative ‘Organisational support for consumer engagement”.

The course will run over four (4) days on 8-9 September (Thursday-Friday) and 22-23 September (Thursday-Friday), here in our CBD offices. Each day will run between 9.30am - 4.30pm.

Please visit the training section of our website for full course information.

There are limited spaces left - enrol now!
I want paper

Would you prefer to receive The Wrap as a printed hard-copy via post? Or do you know someone who would like to read it but doesn't have email?

If so, please write to us - or HCNSW, Suite 3 / Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will send you a printed version of The Wrap going forward. 

Did you know you can book us for customised training?

Health Consumers NSW runs individualised training courses for health services interested in supporting their consumer representatives to be the best they can be. The training is also useful for staff to understand how to engage the community and consumer representatives and fulfill Standard 2 obligations. 

There are two-day comprehensive programs or one-day short courses available, both of which can be tailored for your organisation depending on your needs. 

Contact us on 02 9986 1082 or to make a booking or enquiry.
Research and academics
Study sheds light on psychological distress among Aboriginal parents

The Sax Institute reported on a study addressing the under-researched area of mental health in Aboriginal people which found that nearly one in five parents or carers of Aboriginal children suffers a high level of psychological distress.

The study, published in the Medical Journal of Australia (MJA), found that parents and carers who reported health problems that limited their daily activities had four times the odds of reporting high levels of psychological distress – important information for health practitioners to take into account.

Those who had previously been hospitalised or sought care for a mental health problem had more than three times the odds of suffering high levels of distress. The figures were similar for those who were less involved in community clubs or groups compared with those who were more involved in their communities.

Read full media release

Download the MJA paper
A snaphot from our twittersphere...
8 AugHealth Consumers NSW @HCNSW
Today is Dying to Know Day #D2KDay We plan for life and we need to plan for death  @GroundSwellAus

25 AugHealth Consumers NSW @HCNSW
Consumer Driven Healthcare symposium at Westmead consumers are 1/2 the audience and 3/4 of presenters!
Retweets by Health Consumers NSW
4 Aug - Health Consumers NSW @HCNSW
@aj_brown68 interviewed by @amworldtodaypm about NSW Health inquiry into NSW cancer services 

25 AugHealth Consumers NSW @HCNSW
SNHNetwork ‏@SNHNetwork  Great framework from @HCNSW on how to use consumer engagement in service design and delivery: …

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