Category: Blog

Digital Health – where are we at?

By Pip Brennan, Health Consumers’ Council Executive Director

My Health Record

Since January 2019 when the opt-out period ended, 90% of Australians have ended up with a My Health Record. Like all our state counterparts, we were funded by the Australian Digital Health Agency to circulate information materials on My Health Record via our networks. We have noted that some social media posts have attracted concerns from consumers, and have communicated these to the Australian Digital Health Agency.

We also undertook a survey to explore the issues important to consumers, and gain an understanding of real-life experiences of using My Health Record. We are currently compiling the results of this survey, and you will be able to find them on our My Health Record web page soon.

On 11 December the CEO of the Australian Digital Health Agency, Tim Kelsey, announced his resignation. A new appointment will be made early next year.

WA’s new Digital Health Strategy

As noted elsewhere in this edition, this strategy was released in October 2019, almost a year to the day of the last stakeholder engagement HCC was able to be part of. Now the Strategy has been released, it’s clear that the main goals require an electronic medical record. The scale of this undertaking is not to be under-estimated. The WA Health Information and Communication Technology Consumer Reference Group re-convened in November 2019 and there are hopes for more robust engagement and a co-design process with consumers, clinicians and administrators to drive this project forward in the way it needs to go.

Data and Privacy

Meanwhile, WA’s Department of Premier and Cabinet has completed the Privacy and Responsible Data Sharing consultation, and submissions received are now being analysed and legislation drafted. It may surprise you to know that we are the only state without privacy legislation.

I contributed to an independent submission which was supported by Professor David Watts, former Victorian Privacy Commissioner, and Dr Bridget Bainbridge, whose inputs were kindly supported by the Minderoo.

The submission argued for an innovative approach to the drafting, rather than merely “cutting and pasting” other state’s legislation, first written in the 1980s. Our world has changed beyond recognition since then, and Europe has led the way in developing the General Data Protection Regulations which seek to uphold civil rights. Th argument was made to aim for something along these lines that will allow us to more easily participate in international research.

Data is the new oil

It has often been noted that three enormous enterprises, Amazon, Google and Facebook, do not charge for their products. That is because the data they harvest from their platforms is far more valuable and marketable than membership fees. It is vital that as citizens we do not “give away the farm” when it comes to our health data. There have been alarming precedents in other countries where health data has been swapped for “innovation” – so that the costs of developing a platform, for example, are not met by the public purse. But what is the cost of this in terms of loss of privacy, in leaving ourselves open to having our data re-packaged and sold back to us?

Meanwhile, there is a confusion in the public mind about how much data is shared between government agencies. There is an expectation that data is shared much more than it really is. The excuse of “privacy” is often invoked by government agencies keen to control what information is shared and avoid contentious issues reaching the light of day, or stymie the ability of people to seek redress.

While in WA it was noted that our lack of privacy legislation is hampering data sharing, in all other jurisdictions where privacy legislation exists, it is invoked as a reason not to share data. As always, culture is a key driver of how policy and legislation is enacted.

In Australia there is no independent, publicly funded app for My Health Record. There are three commercial providers who provide apps, and as we saw in 2019 with the Health Engine debacle, in some states our data was being on-sold to third parties – which consumers had consented to with one click, without any real understanding of what we were consenting to. The phenomenon of signing away our rights is endemic. The Norway Consumer Council worked out that it would be quicker and faster to read the New Testament than it would be to wade through the terms and conditions of 33 apps on your average smart phone.

What to do?

As always, a “buyer beware” approach is important. If something is free (Facebook for example), then you’re for sale. Many of us make this call because what we receive is worth the (largely invisible) cost of obtaining something we want right now, which is the functionality of what the app offers.

 

Does this topic interest you? Would you like to stay in touch with projects and initiatives in data and IT, email us at info@hconc.org.au with Digital Health as the subject line.

You might also want to listen to this episode of Big Ideas exploring this complex topic.

 

CroakeyGO – Walking and talking for collaborative health content

Social journalism project Croakey is taking a unique approach to gathering consumer input on health with CroakeyGO. The project brings people together to walk and talk about health issues and to collaboratively produce social media and other editorial content.

In August, North Western Melbourne Primary Health Network (NWMPHN) supported a mental health CroakeyGO, #NavigatingHealth, following the footsteps of a patient journey through the mental health system. Consumer feedback gathered during the partnership project will help guide mental health commissioning and inform the PHN’s Regional Plan for mental health.

The event involved about 100 people from diverse backgrounds. The group stopped at four different locations: a public hospital ED, an Aboriginal health service, a community health service, and a general practice. It looked at the issues faced by different parts of the mental health system and how a person’s care journey is impacted by where they first seek care.

There were speakers at each stop, but importantly all participants were given the opportunity to be interviewed about their own issues and concerns. This was supplemented by hundreds of people engaged with the event and conversations via social media.

“First and foremost, we wanted to listen to our community about what they think is needed in our mental health system,” Mary-Anne Toy, NWMPHN Director of Strategic Relations, said.

“What was working well, what was not working, and how we could make the system fairer and better. We wanted to get as many perspectives as possible. We also wanted to share our work and approaches and build new connections so that we can work together to create better care for our community.”

NWMPHN recognised that collaborating with CroakeyGO would have the potential to have greater impact, reach and engagement than previous meetings or consultations.

“It went even better than we hoped. We had twice as many people as we’d calculated would turn up in real life. And people loved participating, from our own staff to consumers, carers, service providers and academics. From people who knew us to people who didn’t really know what a Primary Health Network was but turned up because they cared about our mental health system,” Ms Toy said.

“What surprised us was how much our own staff loved the event.  It reminded everyone that we’re all in it together and how important it is to get out ‘on the ground’.

“Listening to people at the four partner stops talk about what they did was illuminating – even for those of us working in the field, there’s so much we don’t know about the system and hearing people’s stories is always powerful and humbling.”

Victorian Aboriginal Health Service (VAHS), St Vincents Hospital, Drummong Strett Services and Carlton Family Medical photographed at Fitzroy on Thursday,01 August 2019 in Melbourne, Australia. (Norm Oorloff/1826 )

 

This article was originally published in Health Matters 

Communication and kindness: Using my voice as a consumer and carer

By Deb Letica, consumer representative

Life is an interesting journey that unfolds before us, sometimes leading us to opportunities that we never considered.

I have mostly enjoyed a good quality of health so far. It was not until I had some health issues such as Graves’ Disease, over prescribed thyroid medication, emergency appendicitis and discovering my much-loved younger brother had a rare genetic neurogenetic disease called a leukodystrophy that I became passionate about health.

My lived experience motivated me to become involved in the health sector, starting out as a member of the Consumer Advisory Council at my local hospital.

I attended Health Consumers’ Council consumer training to understand how the health system works and why my voice as a consumer/carer was important. I learnt how to use my experience to have a strong voice for systemic improvement in the health system.

From those small beginnings I have grown in confidence and contribute in a systemic way at a state level with the Department of Health (DoH), South Metropolitan Health Service (SMHS), and WA Primary Health Alliance (WAPHA), and on a national level in training health professionals.

I’ve learnt how the systems operate, the rigorous safety and quality standards, the NSQHC Standards, accreditation of our hospitals, and the importance of training our health professionals of the future. On a personal level I’ve learned how to better navigate the sector, how to advocate on my own behalf and on the behalf of people I care about.

Integrated care is important to me. I think that many vulnerable people fall through the gaps when they are the ones that can teach us so much more. Even when we are diagnosed with a chronic health issue trying to navigate the two systems when you’re not feeling too well can be overwhelming. In fact, it was a complete surprise to me to discover that integrated care wasn’t the norm!

Communication is one area that needs improving when it comes to consumer engagement. Consumers/carers just want CARE (Communicate, Access, Respect, Experience) for a good patient experience. The key to enabling this to happen is kindness. Kindness enables conversations to happen about things that matter to us, what’s important to us. Put us at the centre of the care team and please all communicate with each other!

Kindness doesn’t cost anything, but it can make a profound difference to others. It gives consumers and carers the confidence to ask questions, increase their understanding and health literacy, and it makes them partners in the planning of their care.

Kindness is life changing – it builds trust which then builds collaboration and partnerships. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.

Kindness is the enabler for everything that matters to each of us.

I strongly encourage everyone to become involved in the health sector as a consumer/carer rep.  It’s important to give back to our community, to make the world a better place for us all.

Deb Letica is in a hopsital room, holding a file and speaking to another woman

Photo of Deb Letica by SMHS

*This article was originally published in Health Matters 

Breast Implants – national recall

CONSUMER ALERT – The Therapeutic Goods Administration (TGA) continues to review and assess breast implants available in the Australian market. For more information and the latest updates, see the TGA’s online breast implant hub.

  • On 2 August 2019, the Allergan company voluntarily recalled their un-implanted Biocell macro-textured breast implants and tissue expanders due to a risk of breast implant associated anaplastic large cell lymphoma (BIA-ALCL), a rare cancer of the immune system. Another company also cancelled their product (Emergo Airxpanders Aeroform tissue expanders)
  • On 26 September 2019, the TGA published its decision to recall and suspend a number of other breast implants and tissue expanders. The full list of recalled and suspended products can be found on the TGA’s Breast Implant Hub.

The TGA has developed a fact sheet for consumers regarding the Allergan recall. The TGA fact sheet states that:

If you have symptoms such as pain, swelling, a rash or a lump in your breast, armpit or elsewhere or you are not sure about changes in your breast, please discuss these with your general practitioner (GP), surgeon or other appropriate medical professional as soon as possible.

Patients can also call HealthDirect on 1800 022 222 for further information.

World Patient Safety Day

Today, 17th September, is World Patient Safety Day – a day where 194 countries come together to recognise patient safety as a global health priority.

The slogan for the day is “Speak up for patient safety”, to increase public awareness and engagement, enhance global understanding, and spur global solidarity and action.

So what can you do to speak up for patient safety?

If you are a patient or caregiver

  • Be actively involved in your own care
  • It is good to ask questions; safe health care starts with good communication
  • Be sure to provide accurate information about your health history

From our work with health consumers, and from the personal experience of some of our staff, being prepared to speak up when you know something is not right with your care is a critical element in patient safety – even in the face of health professionals not immediately agreeing with you.

It is only by advocating for yourself, learning as much as you can, and feeling OK about asking questions that you can get the best health care. There are resources available to help you speak up and become more active in the important decisions around your healthcare.

The Choosing Wisely “5 Questions to ask your doctor” is a great prompt for starting important conversations with your doctor about your care.

The Question Builder tool can help you prepare for appointments. By creating a list of questions that you can print or email to yourself, you can get more out of your time with your doctor and remember what you want to discuss.

If you are a public health advocate or from a patient organisation

  • Promote patients’ voices in their own safe care
  • Advocate for safety in health care as a requirement

We have compiled these Self Advocacy resources that you may wish to share to help others advocate for themselves.

If this is an area you’d like to get more involved in, take a look at our Consumer Representation training. Consumer Representatives play an integral role in the Australian health care system. They provide vital information and ideas from a service user’s perspective, to health services and government committees. We can help you use your experience as a patient or carer to create a better health system.

If you are a health worker or health care leader

  • Engage patients as partners in their care
  • Work together for patient safety
  • Ensure continuous professional development to improve your skills and knowledge in patient safety
  • Create an open and transparent safety culture in health care settings
  • Encourage blame-free reporting of and learning from errors

If you are a policy maker

  • Investing in patient safety results in financial savings
  • Invest in patient safety to save lives and build trust
  • Make patient safety a national health priority

If you are a researcher, student, academic, or professional institution

  • Generate evidence to improve patient safety, your research matters
  • Encourage research in patient safety
  • Incorporate patient safety in educational curricula and courses

If you are from a professional association, international organisation or foundation

  • Promote patient safety for achieving universal health coverage
  • Provide learning and development opportunities for patient safety

Improving engagement practices – people with disabilities share their feedback

People With disabilities WA (PWDWA), Health Consumers’ Council (HCC) and a working group of people with disabilities have recently been working on a partnership program together—Empowering Health Consumers’ with disabilities.  Sam and Pip from PWDWA and HCC identified the opportunity to improve the experience of people with disabilities in the health system.  With funding from an Information, Linkages and Capacity Building (ILC) grant, staff from PWDWA and HCC supported a group of people with disability to create and deliver information sessions to people with disabilities and staff.  The work we have done together has been a great learning experience on how we can better engage people with disabilities.  So others can learn from this project,  members of the working group shared their thoughts on how services could involve people with disabilities differently—here are some of their responses.

What would you like to see change to better involve people with disabilities in engagement activities?

“Let organisations know that there are lots of people with disabilities who are willing to share their lived experiences”

“Organisations would need to understand the life experience that a person with a disability brings to the group.”

“That people find out who they can turn to for expert advice about making activities and communications accessible”

“Education of the community that there are a lot of people with disabilities who would love to be involved. It should be mandatory that all boards or committee should have at least one member with a disability”

 

What are some of the barriers that might stop yourself and people with disabilities from participating in engagement activities? (e.g. working groups, community advisory groups)

“Physical access, not flexible whether you can use alternative method of participation e.g. Skype, interpreters, etc. Finishes too late at night (after 8 pm) Not near reliable public transport.”

“A lack of understanding of facilitators of what life experience and background a person with a disability has to offer”

“Most working groups or advisory committees usually meet during my work hours. I may not be paid for my time and service on those committees. I may not have the expertise to speak on behalf of people with diverse disability than my own. Cost of travel to and from the meetings maybe too high.  Pay for the time and services of the person with disability sitting on that committee just as all the other members of the committee are getting paid. Meet their travel cost. Make sure that the person has some experience in the area of your work group meeting purpose and or the advisory committee”

“Knowing about them in the first place – I think it’s important to ensure that people with diverse disabilities are considered as a “must include” group when engagement activities are being planned. Being able to physically participate – consideration should be given to how to make engagement activities accessible to all Not being given the opportunity.”

“Health – like if am sick or in hospital. I know some of my peers are house bound and they are happy to attend remotely but can’t always get there.”

 

Do you have any advice for organisations that would like to find people with disabilities for engagement activities?

“Broaden your perspective of disabilities to beyond what’s visible.  Acknowledge that people with disabilities can often work and recognise that while not everyone chooses to disclose. If you provide info in a non-threatening way you might find them in your workplaces and neighbourhood. Consult with GP’s, community groups, Facebook and places like the Arthritis Centre and other places who have newsletters. Schools, Youth Centres, Youth Disability Advocacy network and Youth advisory councils. LinkedIn, Facebook, YouTube, Instagram”.

“Approach disability advocacy and support agencies, disability service providers, peak bodies etc.”

 

Some additional lessons that the HCC team has learnt from this project include:

  • A major issue is ensuring information is accessible in the first place.
  • Video content should include captions: a great way to do this quickly and at a low-cost is to use YouTube’s auto-captioning and edit where necessary.
  • Provide plain-text versions of material: uploading a plain-text version—and ensuring the headings are accessible through navigation—is a quick task that can make our materials even more accessible.
  • Keep our written content simple: everybody has a different level of reading comprehension but using simple English as a standard is a great place to start if we want our material to be accessible.  To provide information accessible to many people with intellectual disabilities, Easy English versions should be available.  We have produced the written resources from this project in Easy English and are available at this link if you would like to learn more.
  • People with different disabilities – for example, physical, sensory and speech, intellectual, psychosocial – may have different needs in terms of what information and how it’s communicated. This may take time to plan and organise so that information is accessible to all at the same time.

Rebecca’s Story

By Rebecca

Throughout my twenties, I had heard story after story from some of my friends regarding the joys of growing older. Self-confidence. Self-assurance. Self-love. Caring less about the opinions of those who do not matter. Growing to appreciate those who do. I looked forward to entering my third decade.

Six weeks after my thirtieth birthday my world came crashing down.

Friday October 24, 2014 will be forever etched into my mind. It was a beautiful spring day. I happily woke up early with plans to go shopping with my best friend for her wedding dress. I did have an appointment scheduled with my GP later that day, but I decided I would cancel. I was convinced the MRI that I had two days before to investigate some odd seizure-like episodes would return with nothing out of the ordinary. I counted the minutes down until I could call to change my appointment.

However, the clinic receptionist called me before I could get to the phone. A courtesy call to ensure I was still coming in that afternoon, she said. As a former medical receptionist, I read between the lines. Something had been found.

I was diagnosed with a tennis ball sized Rosette Forming Glioneuroma of the Fourth Ventricle in the Cerebellum/Brain Stem area. The Radiologist who wrote the report had spoken to my doctor. An atypical appearing tumour – the like of which he had not seen before – had triggered his curiosity, leading to further investigation.

Understandably my neurosurgeon was frustrated that a Radiologist had taken the liberty to give his professional opinion without additional testing. Interestingly the biopsy taken during the resection confirmed the thoughts of the Radiologist.

Two weeks later I was admitted for a craniotomy that went for ten hours. The sheer size of the tumour, along with evidence of multiple bleeds within, had deemed surgery a priority. According to my parents I passed all tests with flying colours to the point my dad had
checked that the surgery had gone ahead.

Early the next morning, tragedy struck again. At six a.m I was rushed into emergency surgery as a result of a cardio-vascular accident (in simple terms, a stroke) in the same area. My family were alerted and asked to say their goodbyes. My life hung in the balance.

I was left completely paralysed, unable to speak, blind, and with vertigo so severe I could not move, look, or lay on the right for six months. My neurology team held little hope for my recovery. My parents were given information on having me admitted as a permanent
resident to a nursing home. On the delivery of the news that there were no expectations of recovery my mother dissolved into tears. My dad, a short placid man, yelled “YOU DON’T KNOW MY F***ING DAUGHTER” and stormed out of the meeting room taking my
inconsolable mum with him.

I spent approximately a month in ICU and was eventually moved to a Head Injury Rehabilitation Unit after my parents regularly refused to have me placed in a nursing home. Rehabilitation felt slow. Re-learning every single little thing again – from brushing my teeth to reading, to driving – was incredibly laborious.

Learning how to speak again was probably the most difficult. Not only did I have to learn to move my face and mouth correctly, pronunciation, intonation, and where to pause. When I am extremely fatigued, I begin to slur. I am often the last to hear it. My loved ones
know that is a sign I desperately need a nap.

I learned to how to write again after my support worker – a keen artist – and I had a chat about hand sewing. In my previous life, I was trained as a fashion designer. Sewing, knitting, crochet are some of my interests.

My rehabilitation continues to this day. Fatigue management is what myself and my Occupational Therapist are working on. Since the surgeries, I struggle with neurological fatigue. Chronic fatigue has been my constant companion for many years. Previously I was
able to manage it effectively, however, the combination of the two can keep me bedbound for weeks.

Therapy has been a fantastic addition to my rehabilitation especially as it deals with my grief. Losing every single little thing that made me, me has been the most traumatic of all. The moment my brain began to haemorrhage is the moment my life splintered into a million pieces. The future I had planned on was no longer attainable. Career – I was working in Oil and Gas construction – gone. Family – shattered. Relationship – destroyed. The emotional fallout on my loved ones is still evident now.

After the first MRI to check for regrowth, another blow fell. My neurosurgeon delivered the devastating news that the tumour was still present inside the Cerebellum. This time it was deemed inoperable. I remember thinking to myself this journey is a nightmare that will not
end. Two subsequent tumours have been located on the Brain Stem and also deemed inoperable.

Fortunately, the regular MRI’s have shown the tumours – Beryl, Meryl, and Cheryl – to have no evidence of regrowth. Due to the rare nature of the Rosette Forming Glioneuroma, there is no effective chemotherapy treatment available. My neurosurgeon is of the opinion
that radiation may not be effective and therefore better to not proceed in the unlikely event that the tumours mutate to Glioblastomas.

Thankfully after an incredible amount of hard work, practice, and tears, the physical deficits appear negligible. Those who have not known me before this journey have no idea that I have fought a horrendous battle. Nor do they realise that the war continues, and will forever continue.

I am currently studying to be a life coach. I speak to clinicians in the public health sector and share my story at neurological support groups around the State. I serve as Secretary on the Board of the Health Consumer Council (Western Australia).

It has been almost five years since my life irrevocably shattered into countless fragments. Much like the art and craft I enjoy so much, I am daily reconstructing those fragments into a masterpiece of my own creation. I will arise more formidable and more beautiful than I
was before.

Palliative Care – or Quality of Life Care?

By Pip Brennan, Health Consumers’ Council Executive Director

On Saturday 20th July I attended an event in the community, run by the Uniting Church on the Voluntary Assisted Dying Bill. One of the speakers was Emma-Jade Sanderson, who is the Chair of the Joint Select Committee on End of Life Choices. The My Life My Choices Report from this committee is a weighty 600 pages, and a 16-page summary of the report and the response from the current government is also available.

As we noted in pages 9-10 of our Autumn edition of Health Matters, there are divergent views on end of life choices. A key concern from disability advocate Sam Connor was the systemic discrimination of people with disabilities, and the plea to be assisted to live, before being assisted to die.

Our submission to the WA Voluntary Assisted Dying Legislation Consultation echoed this concern. We also noted that “In truth, VAD is going to be accessible to very few people.” What is going to make the most difference to the most West Australians we believe, is access to good quality palliative care.

It would be wonderful if palliative care had more positive community connotations – about living well, having choice and comfort from distressing symptoms.

So I took great heart from Amber-Jade Sanderson’s reflection that whenever there is a focus on voluntary assisted dying in any jurisdiction around the world, more focus and funding is put onto palliative care. And right now there are important opportunities to influence palliative care/ quality of life care.

Your opportunity to have a say on Palliative Care

Summit

On Saturday 24th August there is an important opportunity to have your say on palliative care. A summit is being convened at the Perth Convention and Exhibition Centre:

  • 7am Breakfast
  • 9am Summit

You can book for both (“with breakfast” option), or just for the Summit (“without breakfast”) option.

This is an opportunity to bring together everyone interested in the delivery of palliative care in Western Australia – Health professionals, general practitioners, palliative care specialists, health consumers and carers. It aims to shape how we put into practice Recommendations 7-18 of the My Life My Choices Report, the Palliative Care Strategy 2018 – 2028 and relevant Sustainable Health Review Report 2018 Recommendations. Attendees are encouraged to share their experiences to provide insight and influence the provision of high quality palliative care for all Western Australians. It is a partnership event with Palliative Care WA, WA Country Health Service, WA Primary Health Alliance, Palliative and Supportive Care Education and the Health Consumers’ Council of WA.

An additional session will be held by video conference from multiple sites across regional WA for those unable to travel to Perth on Monday 19 August from 10am to 1.00pm.

Please note that the registration form requires you to complete the job title and place of work. You can just complete “Consumer” or “Carer” for both Job Title and Company/ Organisation. For address you can complete your own address or write the words “Home Address” if you don’t want to complete this information. You can repeat your home number or mobile number for Work Phone.

Register Here

Survey

Whether or not you want to attend, you can have your say in this short survey – you can have a look at the questions here before you jump online and complete the survey.

Complete the survey here

 

 

Why am I here? Because Informed consent…

By Pip Brennan, Health Consumers’ Council Executive Director

This week, the I have the honour as the Health Consumers’ Council Executive Director to be guest tweeter on the Croakey @WePublicHealth page for the week of 15th July 2019.

For the first tweet I thought it only polite to introduce myself, and it got me to thinking again – why am I here? Why am I in this role? Why did I choose the topic of Informed Consent this week? In many ways informed consent is at the heart of most health complaints, and is a core part of why I believe in the importance of the work of the Health Consumers Council.

My passion for informed consent started from this GP conversation that happened to me and I would suspect pretty much every pregnant women in Australia:

GP: Congratulations, you’re pregnant! Do you have private health insurance?

Woman: Yes

GP: Which obstetrician would you like?

This is not an informed consent conversation. Why not? Because there is no mention of midwifery-led services here. There is no nuanced conversation about the evidence-based models of care that note that if you are low risk, you don’t actually need an obstetrician.

Like many people, my first real adult interaction with the health system was when I was pregnant. It really got me thinking, why is it so hard to access evidence-based models of care because they happen to be midwifery led? In my nearly twenty years as a consumer representative, I don’t believe this initial GP conversation has shifted in the way I hope it will in time.

I also think this type of conversation is by no means unique to maternity care, and that the path from the GP to a surgical specialist is short, with not enough detours past midwifery, nursing and allied health professionals. Not so long ago, my partner came off his bike and attended a GP. The advice was that it possibly was a full thickness rotator cuff tear in his shoulder, and surgery was required. However, the physiotherapist he went to noted it was a partial tear and gave him exercises. It healed beautifully over the next six to eight weeks without any need to trouble the surgeon.

Don’t get me wrong, I am very committed to the importance of having a really good GP that knows you over the course of your life, and here at the Health Consumers Council we regularly advise consumers to invest time in finding the right GP. I am very attached to my GP and she is a really key part of my wellness plan. But GPs are usually the gateway to the path of care we can travel, and it’s important that we choose the right care for our circumstances. The consumer always pays the ultimate price for their own health care choices.

Twenty years ago, after much research and some very good luck at stumbling across a birthing centre in a local hospital, plus the grace of everything going well on the day, I was able to have the drug free delivery I was hoping for. I have never forgotten the day my daughter was born. The medical and midwifery staff would have gone home at the end of the shift and likely not given it another thought.

In short, informed consent is a fundamental consumer right. And to exercise that right, we need to know that a) it’s OK to ask questions, and b) it’s also OK to say “can I think about this” or even “no” to suggested treatments.

Pip Brennan is Executive Director of the Health Consumers Council in WA, and independent, not for profit organisation dedicated to ensuring the consumer voice is at the heart of health policy, service planning and review. Pip has worked in the community sector for the last 18 years. Inspired by her own experiences of the confusing maternity care system, Pip initially volunteered as a maternity consumer representative in a range of roles. She began her paid health career as an Advocate working at the Health Consumers’ Council (HCC) from 2006. She has been a conciliator of health complaints, a health NGO professional and always a firm believer in the value of consumers being at the table. She took on the role of Executive Director of the Health Consumers Council in WA from 2015 and was a panel member on the state’s recent Sustainable Health Review.

A day at HCC

Early in January, a Graduate Project Officer from the WA Department of Health Graduate Development Program spent half a day in our offices, shadowing HCC director Pip Brennan. Emily had the opportunity to talk to our engagement and advocacy teams, and learn more about how our organisation works, giving her a better understanding of how HCC advocates for consumers and how HCC operates at a high level. 

“Meeting the Individual Advocacy team was a unique experience,” Emily said.

“I learnt how such services are provided and how the tireless work of the HCC advocates brings about life changing outcomes for consumers. Being an individual advocate proves to be a diverse and rewarding role, as each consumer’s case is unique.”

Being passionate about social justice and advocacy herself, Emily said the idea of collaborating with consumers to reach the best possible outcome was inspiring.

“It was wonderful to see that the voice of consumers is being heard and action is being taken accordingly.”

The highlight of Emily’s shadowing opportunity was sitting in on a meeting with director Pip Brennan and Engagement Manager Clare Mullen. The planning and brainstorming processes she observed focused on future events and initiatives.  

“It was inspiring to see such passion be incorporated into planning and I admired the way Pip and Clare encouraged creative thinking.”

Emily’s shared the key learnings she gained from the experienced.

“Understanding a situation or proposal from a range of perspectives is essential to the success of an idea,” she said.

“Forming mutual respect and creating positive relationships with stakeholders results in enhanced collaboration and ultimately better outcomes for all.”

Her third takeaway was acknowledging that there is a lot of good will and grand efforts being undertaken by people across the health sector.

“It can be easy to forget the good amongst negative headlines and situations; however, in order to ensure good things continue to be undertaken it is important to recognise people’s efforts and motivate them to continue,” Emily said.

HCC would like to thank Emily for her time and hope that the opportunity to learn about HCC’s consumer advocacy and our operations were beneficial to her future career in health.