September 2018

Opting out or not?
You now have until 15 November 2018 to make a decision

There has been so much change in Canberra in recent weeks! This includes some important changes to the My Health Record (MyHR).

Health consumers made it very clear that more time was needed to get information out to all communities about the MyHR. So the date that you will have to make a decision on whether you actively want to opt out of the system has been extended by a month to Thursday, 15 November. If you don’t make a decision by this date a MyHR will be automatically made up for you.

To help you make an informed decision, we have been busy doing a Facebook Live and we were also part of a successful Community Forum on 31 July where the public could directly ask questions of Australian Digital Health Agency representatives.

As a result of the recent outcry about security and privacy concerns with the MyHR, the bill has been redrafted.

Proposed changes are that a record will actually be destroyed if an individual requests for their record to be cancelled. The other change is that law enforcement will need to have a warrant for the record to be opened.

Concerns that haven't been addressed in the proposed changes are:

Secondary use of MyHR data
Informed and ongoing consent
The ability to opt-in or -out of the different parts of MyHR
Privacy default as “open” records (user needs to create pin and other protections)

To help you make an informed decision, here a collection of resources and articles that might help you make up your mind:

My Health Record official website
Health Consumers NSW Facebook Live
Consumers Health Forum of Australia My Health Record Webinar series
Positive Life NSW MyHR information
How to manage MyHR (MyHR website)
How to opt out of the MyHR (MyHR website)
ABC News article 1
ABC News article 2
The Guardian article 1
The Guardian article 2
Sydney Morning Herald article

Second My Health Record Information Forum

Positive Life NSW and the Australian Digital Health Agency, together with us, are jointly hosting a second Information Forum for people living with chronic health diagnoses and NGO services about the MyHR.

When: Wednesday, 7 November 2018; 8.30am (for a 9am start) - 1pm (tea and coffee on arrival/ morning tea at 10.30am)
Where: The Novotel Parramatta, 350 Church Street, Parramatta NSW (map).

This will be an opportunity to ask questions, understand the benefits and risks of the MHR and work out what’s right for you.

Register here now

NEW DATES: Graduate Certificate in Consumer and Community Engagement

Our fully accredited Graduate Certificate program is designed for quality managers, clinical team leaders, consumer engagement coordinators and staff, government officers and others seeking training and national accreditation. This four-day course is aligned with the NSQHS - Standard 2.

When: 16-17 May + 30-31 May 2019 (Thursdays-Fridays)
Where: Sydney Mechanics' School of Arts - Sydney CBD

Find out more and register your interest!

November health consumer representative training

This 2-day program introduces the concepts and practises of consumer engagement in the NSW health system. It is for health consumer representatives engaged with Local Health Districts, Primary Health Networks, or Public or Private Hospitals and health-related NGOs.

When: Tuesdays, 6 and 13 November 2018
Where: Sydney Mechanics' School of Arts - Sydney CBD

Health consumer reps from a variety of organisations usually attend this training. Organisations can register just one or a whole group of their consumer reps.

Find out more and register your consumer reps!

Personal and consumer stories

Mesh injured - Justine's story

In 2010, a 40-year-old mother of two, Justine, opted for a 20-minute quick fix surgery to fix stress urinary incontinence. Her story highlights the insanity of becoming chronically ill over several years to the point of incapacitation.

Here, she tells what happened.

A word with... Yvonne McMaster

Read full interview with Yvonne

In the 'A word with...' series we always talk to someone involved with the health consumer movement.

Today: Yvonne McMaster, a tireless palliative care activist and HCNSW individual member.

News and current affairs

The regulation of medical devices is flawed and another scandal is inevitable

Full ABC News article
ABC News radio interview

More catastrophic failures of medical devices are "almost guaranteed" to happen because there's been no significant reforms to the way Australia regulates such implants, health advocates say.

Following the outcry and class actions in regards to suffering and complications with pelvic mesh implants and a permanent contraceptive device called an Essure, health advocates call for reforms.

These ABC News radio interview and article feature, together with health consumers, the Chief Executive of our sister health consumer peak organisation in Victoria - Danny Vadasz from the Health Issues Centre.

Mesh Injured Australia Inc.

V isit Mesh Injured Australia Inc's website

Have you ever had surgery for Urinary Incontinence (SUI), Prolapse, Hernia or leakage? Did they use tape, sling, tvt, tvt-o, hammock, gauze, graft, polypropylene or a mesh implant? (These are all common names for the medical device usually used in such operations.)

The newly formed national health consumer support group, Mesh Injured Australia Inc., supports women who are suffering from mesh complications. You can call a helpline, become part of their private Facebook support group and find the information you need.

So if you suffer from recurrent urinary tract infections, pain or problems during peeing and sex, pain in your pelvis, groin or legs, sudden autoimmune problems, allergic sensitivities after surgery or other similar problems, contact the group for help!

HCNSW is proud to have played a small part getting the organisation of the ground and running.

Why consulting Dr Google first could be a good thing

Read full Sydney Morning Herald article

Patients have often been discouraged from looking up their symptoms online. But new research, published in the Medical Journal of Australia, has found consulting ‘Dr Google’ before presenting at the emergency department could improve interactions between patients and their treating physician.

A survey of 400 adult patients who presented at emergency departments at St Vincent’s Hospital Melbourne and Austin Health between 1 February and 31 May last year found that over a third had looked-up their problem online beforehand.

Of the 190 patients who had done a preliminary internet search, 150 reported they were able to ask more informed questions, communicate effectively, and better understand their health provider.

Rising out-of-pocket medical costs force more than 1m Australians to put off doctor visits: report

Read the full ABC News article
Read CHF media release

More than one million Australians have put off seeing a doctor in one year because they could not afford it, according to a report from the Australian Institute of Health and Welfare.

Australians are also being slugged $3 billion in out-of-pocket expenses each year, according to the report — despite bulk-billing rates hitting a record high.

It also found 1 in 2 Australian patients faced out-of-pocket costs for non-hospital Medicare services, with the median cost sitting at $142 per person.

“That many people do not access the specialist care that has been recommended by their GP presents a disturbing insight into the unbalanced access to care that is a reality in Australia today,” the CEO of the Consumers Health Forum, Leanne Wells, says.

Have your say

CONSUMER REP OPPORTUNITY

Search for Collaborative Pairs in Western Sydney

Deadline: n/a
Who: Western Sydney

Western Sydney PHN is currently involved in an exciting pilot in partnership with the Consumers Health Forum to bring Collaborative Pairs to the Australian market.

Collaborative Pairs is a leadership program, developed by the King's Fund in the UK, where consumers and service providers work in genuine partnership to lead person-centred health care, services and systems.

Western Sydney is one of the first trial areas and Western Sydney PHN is currently seeking interested pairs within Western Sydney to apply for the first round of this unique leadership opportunity. So if you are a health consumer representative from Western Sydney, this is for you!

The program will appeal to consumers and health service providers who are excited by the opportunity to participate as a pair in a leadership development program that will facilitate transformational change.

Learn more and apply!

PATIENT REVIEWERS

Patient and public review at The BMJ

Deadline: n/a
Who: The BMJ

If you're a patient living with disease or have experienced a significant illness or medical condition, a carer of a patient, a patient advocate acting on behalf of a patient group, or you play a leading part in advocating for patient participation and partnership in healthcare, The BMJ Journal would like to invite you to take part in their initiative. The BMJ has committed to improving the relevance and patient-centredness of its research, education, analysis, and editorial articles by asking patients to comment on them.

Find out more and become a reviewer

ROUNDTABLE

Invitation to Roundtables about new Commonwealth Data Sharing and Release Legislation

Roundtable dates: 17 September + 19 October
Who: The Office of the National Data Commissioner

The Department of the Prime Minister and Cabinet's Office of the National Data Commissioner is holding roundtable consultation sessions in Sydney about the new Commonwealth Data Sharing and Release Legislation.

17 September: Sydney (register by clicking on the link)
19 October: Sydney (register by clicking on the link)

They have taken feedback that their Issues Paper consultation period was too short on board. and will have ongoing consultations. They would like to invite you to further consultation over the coming months to continue to talk about the reforms and their developing policy positions to inform their drafting of the legislation.

NATIONAL OPPORTUNTIES

Current health consumer representative opportunities through the Consumers Health Forum of Australia

painaustralia - Action Plan Reference Group
painaustralia Limited

Painaustralia works to improve the quality of life of people living with pain, their families and carers, and to minimise the social and economic burden of pain. Painaustralia has been funded by the Australian Government to develop the Action Plan which will identify specific actions or policies to improve the quality of life for people living with pain that can be implemented in the next three years.
Deadline: 11 September 2018

Prostheses Clinical Advisory Groups
Department of Health

The Prostheses List Advisory Committee (PLAC) advises the Minister on the suitability to list on the Prostheses List under the Private Health Insurance Act 2007. The Prostheses List Clinical Advisory Groups (CAGs) are expert sub-committees of the Prostheses List Advisory Committee (PLAC) providing advice on issues relating to the clinical effectiveness of prostheses, including effectiveness compared to other devices. The PLAC makes recommendations to the Minister on which products are listed on the Prostheses List. Listing on the Prostheses List affects whether or not a prostheses benefit is available to consumers from a private health insurer.
Deadline: 16 September 2018

COSA Council
The Clinical Oncology Society of Australia (COSA)

The Clinical Oncology Society of Australia (COSA) is a multidisciplinary society for health professionals working in cancer research, treatment, rehabilitation and palliative care. COSA consists of over 1,000 individual members who are doctors, nurses, allied health professionals and scientists working in cancer care throughout Australia. A list of current affiliated organisations is available here. COSA is seeking consumer representation for the COSA Council.
Deadline: 28 September 2018

RANZCR - Peak Imaging Coalition (PIC)
The Royal Australian and New Zealand College of Radiologists (RANZCR)

The Royal Australian and New Zealand College of Radiologists (RANZCR) promotes the science and practice of the medical specialties of clinical radiology (diagnostic and interventional) and radiation oncology in Australia and New Zealand. The College drives the appropriate, proper and safe use of radiological and radiation oncological medical services for optimum health outcomes by leading, training and sustaining professionals. The work of the College is accredited against industry standard by the Australian Medical Council and the Medical Council of New Zealand. Consumer representation is required for the work of the Peak Imaging Coalition (PIC).
Deadline: 14 October 2018

DoH - Australian Community Pharmacy Authority (ACPA)
The Department of Health

The Consumers Health Forum of Australia (CHF) has been invited to provide nominations for the Minister’s consideration for possible appointment to the Australia Community Pharmacy Authority (ACPA).
Deadline: 21 October 2018

Please note: For these opportunities, please contact CHF directly: https://chf.org.au/committee-vacancies

Resources

Getting the most out of online meetings: Top tips from the Consumers and Communication Group at Cochrane

Read full article

Louisa Walsh, Anneliese Synnot and Sophie Hill from Cochrane Consumers and Communication share their top tips for getting the most out of online meetings.

"We found that whether you’re a meeting organiser or a participant there are some simple things you can do before, during, and after online meetings to make them more efficient, effective and enjoyable – for everyone!"

Universal Design makes for dementia friendly hospitals

D ownload the guide

Hospitals can be distressing places at the best of times. If you have dementia or other cognitive condition it can be a frightening and disorienting place whether a patient or a visitor. Stressed patients stay longer and need more medication.

Taking a universal design approach can provide a better experience. Academic research and consumer input underpins this comprehensive guide to designing dementia-friendly hospitals from a universal design approach.

3 Useful Tips on How to Speak Up for Yourself

Read full Reader's Digest article

Whether navigating health concerns or advocating for larger societal changes, it’s important to know how to speak up and make your voice heard.

It seems like it should be easy to speak up, but when we’re faced with power imbalances or struggling to navigate bureaucracy, it can be challenging to summon an inner advocate. This conundrum often comes up in medical settings, where jargon-filled conversations and limited time with doctors can leave you feeling unheard.

Academics

Patient Experience Grant Program
The Beryl Institute

Applications Open for PX Research Grants and Scholar Program

The Beryl Institute's annual grant program supports valuable efforts underway to research the value of improving the patient experience throughout the care continuum.

The Beryl Institute offers an annual Patient Experience Grant Program to encourage and support research into the:

Value of focusing on the patient experience before, during and after care
Impact of customer service efforts on the healthcare experience
Influence of culture on the patient experience, service and outcomes

By recognising these organisations and supporting their ongoing work in their individual areas of focus, the Institute hopes to cultivate ideas and strategies that can be shared across the industry. The Institute will publish a white paper or research brief on the outcomes of each study. Recipients will also present their findings at The Beryl Institute Patient Experience Conference.

Submissions for the grant and scholar program open Friday, August 17, 2018. The deadline to apply is Friday, September 21, 2018.

View this year's guidelines and overview here.

You can book us for 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 introductory courses available.

Contact us on 02 9986 1082 or info@hcnsw.org.au to make a booking or inquiry.

Become a HCNSW member - it's free to join!