Search Results for: health information

Healthy Weight Action Plan 2019-2024

Posted on May 11, 2021

Implementation and Work to Date

Healthy Weight Action Plan 2019-2024

The Minister for Health launched the WA Healthy Weight Action Plan 2019-2024 on Tuesday 26 November 2019.


Since 2018, Health Consumers’ Council (HCC) has been working in partnership with the Department of Health and the WA Primary Health Alliance (WAPHA) to ensure the consumer voice is front and centre of policy and service planning in this area.

Obesity is also identified in the WA Sustainable Health Review as a priority. In this short video (11m) we give an overview of what we know about that work as of early August 2021.

 

Projects


The WELL Collaborative (formerly WA Obesity Collaborative) (Action 1.1)


One of the key action points under the Healthy Weight Action Plan is to formalise the WA Obesity Collaborative, to connect agendas and drive, facilitate, and coordinate action within in the scope of the WA Healthy Weight Action Plan.

The collaborative approach will provide a platform for people with lived experience, health professionals, and policy makers to work together to take positive action.

Feedback since the launch of the Action Plan has shown that this name didn’t resonate with consumers, nor did it fully encompass what the initiative stands for. Through the feedback with consumers and key stakeholders, the initiative has developed a new name and a new look that considers the full spectrum of experiences of people living with overweight and obesity.

This project, currently under development, is now known as The Weight Education and Lifestyle Leadership Collaborative aka The WELL Collaborative.


Quality Criteria and Outcomes based framework – Curtin University (Action 5.1)


A set of quality indicators and an outcomes framework is being developed to assess what quality health service looks like in the area of overweight and obesity. HCC has been involved in the development of this project, sharing insights from consumers and holding targeted discussions to find out what is important to consumers when it comes to healthy weight services and programs.


Total Meal Replacement trial – Diabetes WA

 

A pilot of an innovative approach trialing the use of total meal replacement products and telehealth support from allied health staff is being led by Diabetes WA. HCC organised a consumer workshop in 2020 and is involved in the project steering committee.


Shift. A guide for media and communications professionals

 

East Metropolitan Health Service developed a guide to support media and communications professionals to change the narrative around obesity. HCC had input into the draft document and has been promoting this widely.


Workforce development – East Metropolitan Health Service


East Metropolitan Health Service is developing training for health professionals on how to talk about weight and what support services are available. HCC is providing feedback on the draft course.


GP Healthy Weight Project – WA Primary Health Alliance


The WA Primary Health Alliance is working to improve the capability of general practices to engage in weight management quality improvement activities and deliver suitable weight management assessment and intervention services. HCC is working closely to provide consumer perspectives on this project.

Consumer Advisory Group


HCC’s Healthy Weight Action Plan Consumer Advisory Group provides a consumer perspective on a range of activities related to the implementation of the Health Weight Action Plan.

How consumer feedback shaped the Action Plan


HCC believes it is important that conversations around the Healthy Weight Action Plan are informed by people with lived experience of overweight and obesity.


We gathered consumer perspectives via a survey, workshops, and an online invitation for people to share their stories. You can read a summary of the consumer engagement activities that informed the first phase of this project.

The Action Plan is not “business as usual” for the health system. We are particularly interested in the inclusion of the actions that recognise a new way of working is needed to really impact on this complex health issue.


2020 video update


Helen Mitchell from the Department of Health spoke at a virtual consumer representative drop-in session on how the Action Plan was developed with consumer input, and how the Action Plan is starting to be implemented.

https://youtu.be/jihBv_QeoTU

Previous community events


World Obesity Day virtual event


The Obesity Collective hosted a 90-minute virtual event on World Obesity Day 2021 with speakers from across the country.

This session explored many aspects of obesity through a series of ‘rapid talks’ from consumer organisations and health professionals. HCC’s Deputy Director Clare Mullen presented on involving people with lived experience in planning services. The recording of this event can be accessed here.


Community Information Sessions


We regularly hold community information sessions to provide updates on the implementation of the Action Plan and opportunities for conversation around healthy weight.

In February 2021 we held a session with Weight Issues Network and The Obesity Collective, exploring how to speak up for better services for treating overweight and obesity and the importance of sharing our stories to influence change. The recording of the session can be accessed here.

In December 2020 we provided an update on how consumer perspectives were influencing the implementation of the Healthy Weight Action Plan. You can view the slides here and a recording of the session can be accessed here.

In October 2020 we held a community morning tea that explored three key themes in this space: costs and accessibility of services; clarity of information; links around overweight and obesity with mental health and stigma.

6. Advocacy Information & Resources

Posted on February 11, 2021

This page provides key resources and links to websites to help you navigate your way around the health system.

Charter of Healthcare Rights  

Mental Health Rights

  • A guide to your mental health rights as an involuntary health patient and your rights as a patient of a psychiatrist.  

Mental Health Act Consumer Handbook

Informed Consent

Guardianship and Administration  

Goals of Patient Care

  • Goals of Patient Care is a clinical care planning process used during an admission to hospital or other care facility.
  • It helps to determine which treatments would be useful for you, if there was deterioration in your condition.
  • You can watch a video on Goals of Patient Care for consumers or visit this website for more information.

Questions to ask your doctor 

Procedure Information Sheets 

Written information about treatments and procedures  

Understand your pathology tests 

Information about pathology to help you manage your health.

Going to Hospital 

Manage My Care

Manage My Care gives you access to outpatient appointment and referral information. 

You can:

  • Easily see your outpatient appointments and referrals 24/7
  • Update contact details for patients over 16 years old (e.g. address and phone numbers)
  • Request to reschedule, confirm or cancel upcoming outpatient appointments for select specialties
  • Access information about your appointment and hospital visit.

The app is available on Apple and Android.

Private Health  

 

 

Experts by experience – mental health peer support

Posted on August 11, 2020

In our previous Health Matters focused on self-advocacy and peer support, Rhianwen Beresford, Convenor of the WA Peer Supporters’ Network, spoke about a vision for peer support where every Western Australian knows what peer support is and can access it if they want to.

Peer support happens across all sectors and walks of life. If you’re using your own experience to help someone through a similar experience, that’s peer support. Mental health peer support offers a whole range of benefits – friendship, empowerment, lessening of stigma, increased acceptance, and shared insights about life with mental health experiences.

On a larger scale, mental health peer support can have a positive impact on the way society views and treats mental health, leading to improvements in service and more person-centred, trauma-informed responses.

Carli Sheers is an active consumer representative and mental health advocate, and we spoke to her about the importance of peer support.

Why is mental health important to you and what made you want to become active in this space?

I recovered from mental health issues through accessing peer support many years ago, and have worked in the mental health sector in various roles for 13 years. My experience and skills as a Consumer Consultant have grown through active participation in the sector and Membership of Mental Health Australia’s National Register. With intention, I developed an extensive network of mutually beneficial collegial relationships and can speak from beyond my own personal experience with their consent. I am lucky to have access to a peer mentor who I admire, respect and value. I became active in the mental health sector to raise the expectation of recovery, reduce stigma and discrimination, and increase my employability as employment is an indicator of health. I also invested in my education and founded a mental health education and training consultancy business last year.

What are the major benefits of mental health peer support, and why does it play such an important role alongside clinical treatment options?

Peer workers undertake a variety of functions in diverse settings, from service delivery to policy making to funding of services. Personal lived experience is an essential job criterion, and other competencies include a person’s overall life experience, employment and education history, emotional maturity and ability to engage and communicate. Peer workers provide an effective and high-quality intervention that can be either complementary to clinical service or, in some situations, effective as a stand-alone intervention. They see challenges as growth and learning opportunities, not as crises.

Mental health peer support workers are experts by experience and provide a specialist knowledge base that can transform individual lives and systems of care. They are recognised for using their insights and expertise from their personal expertise to inform their work, and can walk alongside people who have experienced similar distress and support them without trying to ‘fix’ their situation.  It is about engaging people with mental health issues as the central actors in their management of their mental wellbeing, helping them to find meaning in their life experiences, and guiding people’s journeys towards a contributing life. This was my experience when I accessed Grow*, a national consumer mental health organisation.

Major benefits of mental health peer support include helping people to believe in themselves and re-build their lives, discover their own solutions and develop a sense of control, master their emotional strengths, work towards self-agency and self-advocacy, enhance the quality of lifestyle and personal choices, and finding their strengths, capabilities and possibilities. Peer workers influence much needed cultural change in services and workplaces, decrease people’s need for costly acute services, and are effective in engaging people who have been difficult to reach and not benefited from traditional services.

(Source: Peer Work in Australia. A New Future for Mental Health. 2018)

In the wake of COVID-19, many people are finding themselves on a new mental health journey. As someone who advocates in this space, what advice would you give?

Navigating the mental health system can be complex, as there are many pathways for care and support. It is important to ask for help, and I encourage people to see their GP (or access a Telehealth appointment) if they are not coping due to COVID-19.

I also refer people to the WA Mental Health Commission’s website as a reliable source of information about supports and services. Consider joining a support group via ConnectGroups (https://connectgroups.org.au/), who are the peak body for support groups in WA.

Do you have any advice for those interested in becoming a mental health consumer advocate?

Life-long learning is important to being an effective mental health consumer advocate.  I encourage people to access Consumer Representative training via Health Consumers’ Council and Consumers of Mental Health WA+.

 

*Grow is a community-based organisation that has helped tens of thousands of Australians recover from mental illness through a unique program of mutual support and personal development. To find out more, visit https://www.grow.org.au/

+CoMHWA currently hosts the WA Peer Supporters’ Network (WAPSN), a network for and by peer supporters in Western Australia. You can join or find out more by contacting info@peersupportwa.org.au or contact (08) 9258 8911.

This article was originally published in Health Matters

The art of compassion in healthcare

Posted on April 23, 2020

By Dr Andrew Leech FRACGP MBBS BSc DCH

In 2019, Dr Andrew Leech was recognised for his commitment to patient-centred care as winner of the Health Consumer Excellence Award for Compassionate Care. Dr Leech is passionate about family health and the integral role of a GP, and believes GPs are in a unique position to offer support to patients. Here, he talks about the art of compassion in healthcare.

How do patients like to be understood and treated when they see a medical professional?

We are generally taught, as doctors, that taking a good history about symptoms, performing a physical examination, and offering evidence based, relevant treatment, makes a good doctor.

I now realise that medicine is a true blend of art amongst all the science. The balancing act between really understanding the patient as well as treating them is not an easy one. Medical schools are trying harder to teach this concept, but it comes with time, experience and feedback from your peers and from patients themselves.

The skill of understanding the person as a whole, and not just for their presenting complaint, probably takes a lifetime to master. We are complicated beings with many facets to what drives us. We depend on countless external and internal stimuli to function and thrive.

Despite all this, I have learnt that there are some beneficial skills that give patients hope, even when it may appear that all hope is lost. Active listening is a good start, but listening with empathy, understanding and compassion helps us to not only grasp the problem and build a therapeutic relationship, it helps guide treatment.

Patients definitely open up more when they are faced with some level of kindness. These may not seem like skills as much as a core human emotion that we all have the ability to possess. But the problem is we are busy, and amongst chaotic days filled with challenges it can be mentally fatiguing being a doctor, and therefore the emotional side of medicine can be stripped away.

I often feel we owe more than just our attention to patients. The Latin origin of the word doctor is ‘to teach’, and this rings true as we try to help educate our patients on the human body and why something might be changing for them. I think doctors can get caught up using quite funny language. We forget that this makes little sense. I am often caught out with this, only the other day the patient looked puzzled when I said they had a ‘carotid stenosis’. Part of the art of medicine is in the communication and wording of how we educate, therefore it may take different words to get a point across, diagrams, handouts, even seminars or workshops, online resources and social media.

Patients are becoming increasingly ‘educated’ in this era of information technology. I feel my role in this is to weave through the information and present the most logical, evidence-based solution. Adding compassion to this discussion means patients often feel ‘you get them’, or at least that you’re listening. We may not have all the answers, but if we walk this journey together then life might be just a little bit easier.

 

*This article was originally published in Health Matters 

Sexual Health and Blood Borne Viruses

Posted on April 17, 2020

Consumers’ Experience of Sexual Health and Blood-Borne Virus (SHaBBV) Services

Over 2020-2021 we convened a consumer committee to focus on developing a consumer-led evaluation process of our state’s SHaBBV services.  As part of these conversations we asked for help from SiREN researchers who undertook a rapid review of evidence they had undertaken in relation to:
1. Consumer evaluation of current SHABBV services in Western Australia (either NGO or government/hospital)
2. Consumer insights as to why they do not access SHABBV services.

A summary of the Rapid Review paper is included here.

We met again in April 2021 – minutes of that meeting are here and the key next step was to meet with WA Health to talk about funding for consumer led evaluation initiatives. We are excited to announce we have been invited to submit a joint project proposal with Health Consumers’ Council and SIREN to co-design evaluation of services funded by WA Health. In other words, if they are being funded by WA Health, they will provide a report back on outcomes important to consumers. We will post updates on this page when they are available.  We summarised the whole of these series of conversations in this one pager.

Stigma e-learning module

Meanwhile we are also very excited to announce that WA Health have committed to creating an e-learning module on stigma. This project is starting immediately – we will post updates here when available.

Background

The WA Sexual Health and Blood-borne Viruses Advisory Committee (WA SHaBBVAC) assists the WA Department of Health’s Chief Health Officer under Part 2, s.33 of the Public Health Act 2016. The WA SHaBBVAC includes members from non-government organisations, health service providers, researchers, policy-makers and three consumer representatives. You can read more about this Committee here. There is a consumer portal you can check out here.

HCC is working collaboratively with the three consumer members to develop a strategy to ensure a wider consumer voice is brought into the SHaBBVAC meetings.

  • We met in December 2019 and again in February 2020 and agreed that the most effective next step is to ensure that outcomes for consumers are captured as part of the process of reporting on the Department of Health’s suite of Sexual Health and Blood Borne Virus strategies.
  • We convened a meeting on 31st March 2020 to create a Consumer Alliance of non profit organisations and grass roots consumers.
  • An identified next step from this session was to convene a grassroots SHABBV consumer session to gather together people in the community, reaching out beyond the services to those who may not access current SHABBV services. The session explored how to engage with a wider group of people, and what kind of services they might like to see. This 1.5 hour session was facilitated by HCC and a summary of the session will be posted here soon.
  • A second meeting was held with the Sexual Health and Blood Borne Viruses Consumer Alliance on 5th May which noted as a key action that the membership of the group needs to be consumer only, to meet monthly and progress the consumer evaluation of services. Quarterly meetings will be held with consumers and NGOs together. This is all being established currently (July 2020)

Staying in touch with the project

 

Consumers’ Experience of Sexual Health and Blood-Borne Virus (SHaBBV) Services


Since 2018 the Health Consumers Council has co-chaired the newly formed Sexual Health and Blood Borne Viruses Advisory Committee, convened after the new Health Services Act was established.

You can read more about this Advisory Committee here.

From 2019, there are consumers also sitting on this Committee, and this page is designed to provide relevant updates.

You can contact us on info@hconc.org.au if you require any further information.

 

Choosing the Right Health Service

Posted on April 1, 2020

This video and associated article provide information about choosing the right health service (at the right time) out of the many available in (Western) Australia.    This resource is provided by Health Direct.

What Care do I need – English

ما هي الرعاية التي أحتاجها؟ – Arabic

আমার কী কী সেবা দরকার? – Bengali

我需要什么医疗照顾服务？- Chinese Simplified

我需要什麼醫療照護服務？ – Chinese Traditional

Tôi cần được săn sóc gì? – Vietnamese

CaLD Community Information, Resources and Events

Posted on April 1, 2020

The HCC CaLD team endeavours to support culturally and linguistically diverse community in WA, including migrants and refugees, to get the most out of healthcare. In order to do this HCC creates and/or promotes a range of resources about the WA Health System, helps interested parties stay abreast of opportunities and ways to support communities to get involved in and/or have their say on healthcare, and with free workshops and community discussions.

Information about the WA Health System

CaLD Community Panel

CaLD Community Workshops and Events

These sessions are for people in Perth (and surrounding areas) who identify as being from a Culturally and Linguistically Diverse background. They aim to educate and inform on the health system and getting the best out of it. They also hope to spark conversations about healthcare delivered well and not so well in order to assist with service improvements.

Community Conversations

Rights and Responsibilities in Healthcare and Going to Hospital information session

Digital Health

Posted on February 18, 2020

There is so much going on in the digital health space. It is a complex area and difficult to know what issues need to focus on. People are rightly concerned about their data and its privacy. But being able to share your health information quickly could mean the difference between life and death. Queensland Health developed a Consumer Charter on Digital Health which aims to reflect consumer priorities and needs in relation to digital health.

In WA the Digital Health Strategy 2020-2030 was released, and a key initial deliverable will be creating a statewide electronic medical record in our hospitals. This may seem confusing, given that the My Health Record was implemented nationwide in 2019. As at December 2019, 22.68 million Australians had a My Health Record, with 2.4 million of those in WA. (See here) A key thing to remember is that:

  • An electronic health record is designed to have a more overall view of someone’s health, across hospitals, GPs, pharmacists etc.
  • A medical health record tracks medical care usually within one hospital.

We are currently working with the WA Department of Health to develop a Consumer Charter which focuses on digital health. HCC are convening 10 Kitchen Table Discussions on the topic and is currently seeking Discussion Hosts. The Kitchen Table Discussion comments will be used to form a Consumer Charter – this will include non-negotiable principles to guide future direction.

My Health Record Resources

In 2019, the Australian Digital Health Agency released a number of new resources, and we partnered with them to share them on our website and through social media. We also undertook a Consumer Survey – you can find the full report of our work here.

If you are using My Health Record, we recommenced you log in to take a look at your information and update your privacy settings. These brochures provide further information on how to use your My Health Record now that it has been set up.

How can I find out more?

Check out these Frequently Asked Questions

What is My Health Record?

My Health Record is an online storage and management system for each individual’s health information, such as prescriptions, vaccinations, allergies, and results of pathology tests. My Health Record only contains a summary of your health information, not a detailed record like your GP would keep. My Health Record is administered by the Australian Digital Health Agency (ADHA).

My Health Record does not replace records currently held by your health providers, such as your GP or hospital; it is an additional collection of health summaries. You control what appears in your My Health Record, and who can see the information contained in it.

Summary information flows into an individual’s My Health Record from Medicare, GPs, public and private hospitals, specialists, pathology, diagnostic imaging, allied health, and aged care. If you have a My Health Record created, the last 2 years of information from your Medicare record will be added to your My Health Record. No past information from other sources will be added. For example, any hospital visits you have had prior to your My Health Record being created will not appear.

Many people already have a My Health Record already as it’s been available for several years. It was previously known as a Personally Controlled Electronic Health Record (PCEHR) or eHealth record. However, now all Australians will have a My Health Record made for them automatically unless they opt out by 31 January 2019.

You can read more here

Do I already have a My Health Record?

All Australians now have a My Health Record, unless they chose to opt out before 31 January 2019 or have since deleted their My Health Record.

You can find out how to access your My Health Record here.

How can I be sure information about My Health Record I'm reading is reliable?

When assessing any information about health, some of the key questions to ask yourself are:

WHO WROTE THIS?

Reliable sources of information include government publications, peak bodies, and government-endorsed sites. If it is not clear who is running or funding the site you are looking at, visit the About Us or Contact Us pages to find out. If you still don’t find an answer there, consider looking for another site altogether. A reliable source of information will be transparent about their who they are and their sources of funding.

WHAT IS THE EVIDENCE FOR WHAT THEY ARE SAYING?

Information is likely to be trustworthy if is based on reputable research or official documents you can refer to. Testimonials or opinion are not reliable sources of health information.

IS IT AN OBJECTIVE VIEW?

Does the information seem balanced? If the site is published by a private company or special interest group, consider also seeking out another point of view to see if there are other ways to think about the issue.

IS IT UP TO DATE?

Some of the information about My Health Record has changed rapidly. Make sure the information you read to inform your decision has been published recently.

Read this Health Direct information sheet about health information or this one from the Children's Hospital, Westmead

Is there a list of terms and definitions to help me work out what it's all about?

See this glossary of terms from the Australian Digital Health Agency website

What about privacy?

If you have concerns about the security of your information, increasing the security restrictions on your account may be enough to satisfy you. The security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when. See here for more information about how to set privacy and security controls.

See here for the My Health Record Privacy Policy

Can I set controls on my own My Health Record?

Yes you can. You can set a PIN on your whole My Health Record so that your health provider has to have you in the room before they can access it. You can also lock down individual documents.

My Health Record's security settings allow restrictions on which individuals (such as family members) can see your information, and what information your healthcare providers can access, and more. For example, you may not want your pharmacist to view information about a mental health condition. You also have the option to lock individual documents held on the system, so information you feel is sensitive can be restricted. Setting a passcode on these documents means you can control who sees them, and when.

See here for more information or check this Privacy Fact Sheet from the Office of the Australian Information Commissioner.

Can I see who has viewed my record?

Yes you can, although it is usually at the health service level, it won't give you the name of the individual health professional who has viewed your record. Have a look here to find out more.

What about young people?

As a protection for the privacy of young people, parents are currently not able to access the Medicare information of a child over the age of 14. However, a parent is able to access their child’s My Health Record until the child turns 18 unless the child chooses to take control of their own record. Young people can take control of their own record from the age of 14.

Follow the links below for some further information that young people and their carers may wish to read.

The Conversation - Freezing Out the Folks

You Can Take Control of Your My Health Record from 14 Years of Age

What about family and domestic violence?

People vulnerable to domestic and family violence, who wish to keep their location details secure, may need to consider whether having a My Health Record presents a risk to them. You may choose to use My Health Record anonymously, or using a fake name (known as a pseudonym)

See this brochure here from the Australian Digital Health Agency on their webpage

See also this resource form the Women's Legal Service Queensland - Women and My Health Record

What if I'm worried about stigma? I have a sensitive health issue

If you have a health issue or life circumstance that you consider sensitive, you may wish to investigate the potential implications of sharing your health information via My Health Record. The risk of stigma and discrimination by health care workers may be a worry for some people, such as those carrying a blood borne virus, or those who have been affected by the justice system. The potential of a data breach that exposes personal information is also a serious concern for some people.

Sensitive issues or circumstances may include:

  • sexual health
  • mental health
  • degenerative disease
  • health care worker
  • drug use
  • criminal record
  • blood borne virus
  • sex worker
  • lesbian, gay, bisexual, transgender, or intersex
  • pregnancy, or termination of pregnancy

If you are in any doubt, you may want to consider opting out, or setting higher privacy controls such as a PIN for the whole Record

Can I use a fake name to protect myself?

Yes you can. The technical term for a fake name is a pseudonym. You can use a pseudonym for privacy reasons, for example you can use a different name for you or your children when you get healthcare.

To do this, you need to apply for a pseudonym Individual Healthcare Identifier (IHI) through the Department of Human Services (DHS). You can then use this name to register for a My Health Record.

Your pseudonym IHI isn’t linked to your Medicare information, so this information will not be available in your record.

You will not be identifiable or traceable through your pseudonym.

You can choose to have a My Health Record using your real name as well as a fake name (known as a pseudonym), and you have the option to merge these two records at any time.

To apply for a pseudonym IHI, you can call DHS on 1300 361 457.

What if I don't speak English, or am not confident with language?

Languages other than English can be accessed here

The My Health Record website contains a number of plain text and easy to read fact sheets for people who have difficulty reading and understanding written information. Some of these fact sheets are specifically designed for Aboriginal and Torres Strait Islanders. Interpreting assistance in languages other than English is available by calling 131 450.

Many sections of the My Health Record website contain videos which explain the information on the page.

See the Accessible Information page on the Australian Digital Health Agency page

What if I don't have internet access or am not internet savvy?

Each individual is responsible for setting the level of security on their Record, and ensuring that information on your Record is accurate and up to date. This information includes your contact details, and ensuring that you agree with the contents of information uploaded by others. Anyone who is not able to do this may wish to consider whether this is a risk to them. However, if you don’t have internet access, you can call the My Health Record helpline on 1800 723 471 to access your information. Helpline staff can tell you which documents are in your My Health Record but not what each document contains.

Who will benefit most from My Health Record?

My Health Record will give your healthcare provider a clear and complete record of your tests, medicines, and treatments, without you having to record this yourself, or communicate it to your provider. This could be particularly helpful to people who:

  • Are elderly
  • Have communication difficulties
  • Have English as a second language
  • Have cognitive or memory difficulties
  • Have severe allergies or other conditions
  • Take multiple medications
  • Have complex health conditions
  • See multiple healthcare providers
  • Live in a rural or remote area

A central record of your medical history means that you do not need to be responsible for remembering all of your health information, and your history is available to health professionals in a medical emergency.

Should I opt out or opt in??

Take the time to read about the factors that matter to you so that your decision is well informed.

  • Are you clear about the risks and benefits of each option? If not, do you know where to find more information?
  • Are you clear about the aspects of the decision that affect you personally?
  • Do you need advice and support to make this decision? If not, what reliable sources of advice and support are available to you?
  • Do you need help to opt out if you choose to? If so, who can you go to for help?

If you have weighed up the options and are still unsure, the Ottawa Personal Decision Guide may be a useful tool to guide you through the process.

The Case to Opt In

The Case to Opt Out

If I opt out, is my decision final?

If you opt out of My Health Record before the 31 January 2019, you can then decide to opt in at a later date. If you do not opt out, but later decide that you no longer wish to have a My Health Record, you can choose to have your record deleted. Cancelling your record will permanently delete your My Health Record.

How do I opt out?

If you decide you would like to opt out, you can do that on the My Health Record website or by calling the Helpline on 1800 723 471 or you can click this link

You can check the Help Line wait times here

To opt out of My Health Record, you need to verify your identity.

You will need:

  • your Medicare Card, or Department of Veteran’s Affairs (DVA) card, and
  • one of the following forms of Australian identification:
    • your driver licence; or
    • your passport; or
    • your ImmiCard

Please email us if you have any concerns regarding the My Health Record and we will ensure you are given access to the information you need.

Digital Health – where are we at?

Posted on January 14, 2020

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.

 

Feedback sought about making complaints or giving feedback to health services

Posted on November 29, 2019

In 2020, Health Consumers’ Council (HCC) worked with the Patient Safety Surveillance Unit in the Department of Health to learn more about how consumer feedback – including complaints and compliments – is collected, provided, and used for improving health services. We held a number of workshops with consumers and we also held telephone interviews with some consumers in regional areas. We held targeted sessions for Aboriginal community members, and Consumers of Mental Health WA ran a targeted session for consumer of mental health services.

When we talk about feedback we mean both compliments and complaints. It includes feedback you give in writing, as well as feedback you give by telling someone in person or on the ‘phone.

In summary, these were the key issues from the consultation sessions HCC hosted:

  • There are many barriers to giving feedback or making a complaint – most of which WA Health can influence
  • Importantly, people from all groups described how difficult it was to find out how to give feedback or make a complaint.
  • Feedback mechanisms don’t match the complexity of the system
  • Many people experience the responses received to feedback or complaints as impersonal and unhelpful
  • Many Aboriginal people described experiences of racism in the health system which impacted on the likelihood and way they give feedback or make a complaint. There is much more to do to embed feedback mechanisms that are experienced as culturally safe by Aboriginal people.
  • Providing feedback is often an emotional experience – a trauma-informed response could help create an environment where staff are more able to receive feedback and consumers are more supported to provide it.

These were the barriers to giving feedback:

  • A prominent reason for not giving feedback is simply that people were not asked. There was a strong theme in the workshops about providing consumers with opportunities to give feedback “in the moment”. Suggestions included putting information next to hospital beds and making this known to people and having a visible presence – in the shape of a person – in a prominent place in a health service.
  • Lack of time and energy on the part of the consumer – dealing with one’s health (or that of their family) is already time consuming.
  • Unsure of the process for giving feedback/making a complaint
  • Have previously had a negative experience of giving feedback
  • No confidence that investing the time and energy in giving feedback will result in positive change
  • Fear of being treated less well as a result of making a complaint – this was particularly prominent from people living in regional areas
  • Literacy and language issues

What consumers would like:

  • A system where it is easy to give feedback.
  • Information about giving feedback or making a complaint that is
    • more visible
    • clearer
    • proactively given – seek feedback throughout the process of care
  • Ways to collect feedback that include
    • Culturally safe options for Aboriginal people
    • More face to face options
    • More options that don’t require written feedback
    • More opportunity to give feedback in the moment
  • A more personalised and caring response
  • A streamlined consistent process that
    • Is simpler
    • Is consistent between health service sites
    • Is focused on the needs of the consumer not on the needs of the system
    • Includes a clearer and more effective process for complaints that are complex or that relate to multiple parts of the system
  • More support to provide feedback
  • More independent support focused on the interests of the consumers
    • Focus on removing barriers to giving feedback
  • Accountability
    • More external review of complaints and feedback process
    • Assurance that feedback leads to positive action and change.A row of four people holding blank speech bubbles above their heads

(Updated 17 July 2020)