Category: Blog

My Health Record. Your Say.

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In May of 2015, Australia’s flagging electronic health record received a much-needed resuscitation by then Federal Health Minister Sussan Ley (let’s not go there!)

Since that time, the new Australian Digital Health Agency has been created, opening its doors on 1st July 2016. A new Chief Executive Officer, Tim Kelsey was appointed.

One of the key problems with the first version of Australia’s digital health record was the fact that we needed to opt-in, to take the decision to sign up for one. Overwhelmingly, we didn’t. In fact, only 10% of Australians ever did.

Since My Health Record’s rebirth, there has been a trial in Western Sydney and Northern Queensland for an opt-out trial. This means you need to make the decision to un-register. Overwhelmingly, people didn’t. 98% of people on the trial didn’t, while 2% of people did. Since that trial, the number of Australians with a My Health Record has increased from 10% to 18%. In people terms, currently 4.3 million Australians have a My Health Record.

And? So?

You may have experienced that disconnect between your GP or community health care provider and hospital. In part this is because hospitals are funded by our state governments while GPs and community care providers are funded federally. It makes for a massive data divide which we continue to bump up against. My Health Record is the missing link between the two systems and can provide a better integrated, safer health system. And you can always opt out if it is not something you want to be part of. AND you can also put notes into the My Health Record too. Sure, it’s early days, and I have had one for some time now with a bit of data but not a whole lot. Over time though, there is going to be a tipping point, and My Health Record will be populated with enough data to ensure it will become an invaluable tool for a more connected, safer health system.

What do you think? Fill in the survey…

On 3rd November 2016, the Australian Digital Health Agency launched their consultation. The consultation includes an online survey which closes on 31st January 2017.

Make sure you have your say!

Pip Brennan, Executive Director. 

Telehealth, valuable, affordable & life saving for patients

Australia’s first large-scale trial of telehealth monitoring chronically ill patients at home reduced mortality by 40% in Bacchus Marsh, Victoria.

It also reduced hospital admissions by 36%, length of stay in hospital by 42% and Medical Benefits Scheme expenditure by 24% through savings in cost of GP visits, specialist visits and procedures carried out.

In a 12 month long trial CSIRO researchers  provided 287 patients with a telehealth device that included participant/clinician video conferencing capabilities, messaging features and the delivery of clinical and study specific questionnaires, as well as vital signs devices to monitor their ECG, heart rate, spirometry, blood pressure, oxygen saturation, body weight and body temperature, with glucometry an optional add-on.

Patients reported improvements in anxiety, depression and quality of life, with many finding that home monitoring gave them a better understanding of their chronic conditions.

Jack Fernihough, a participant in the trial, attributed the telehealth technology to saving his life when it picked up the early signs his heart was under increased stress, allowing him to receive lifesaving surgery.

“In April this year I had a triple bypass and without the monitor we wouldn’t have known that there was anything seriously wrong,” Mr Fernihough said.

“It found out things about my heart that I wouldn’t have known about until it was too late and I’d probably be gone by now.”

CSIRO lead researcher Dr Rajiv Jayasena said the 12-month trial enabled chronic disease patients to self-manage their conditions at home through the provision of telehealth services.

“Aged patients with multiple chronic diseases, such as cardiovascular disease, diabetes or chronic lung disease account for more than 70 per cent of our health system expenditure,” Dr Jayasena said.

Health workers can assess changes in their patient’s conditions remotely and provide appropriate care interventions earlier to help them stay out of hospital.

Djerriwarrh Health Services’ Telehealth nurse, Lay Yean Woo, said was a very easy process to monitor her patient’s health results daily.

“I can see the information in real-time, I can monitor them, following up with a phone call if there’s any issues with their health,” Ms Yean Woo said.

“Also with the time that has been freed up I can look after more new clients being referred to me.”

Dr Javasena said more than 500,000 Australians aged over 65 would be good candidates for at-home telemonitoring.

Telehealth returned $5 for every dollar it cost. Applied over the country it would save the health budget more than $3 billion a year.

By Frank Smith – HCC Blog Contributor


Do you have a chronic condition and live in a remote region of Western Australia?

Click here to find out more about WA Telehealth services.

Do you live in a remote region of Western Australia and require health advocacy?

Health Consumers’ Council (WA) (HCC) Advocacy Service can help you navigate the health system and help you understand and support your healthcare rights. HCC can help you find and access health services and assist you in providing feedback about your health experience. This free service is available to anyone in WA. HCC has onsite Telehealth video conferencing equipment available to assist consumers in regional areas. Call (08) 9221 3422 or FREECALL 1800 620 780 to speak to an advocate.

Volunteering good for mental health

VOLUNTEERING in middle and older age is linked to good mental health and emotional wellbeing, according to a survey of 5000 British adults. Researchers Drs Faiza Tabassum, John Mohan and Peter Smith mined responses to the British Household Panel Survey (BHPS), which is conducted every two years on a representative sample of adults living in Britain.

The survey included a wide range of questions on how participants spend their leisure time and a battery of questions to measure mental wellbeing. Around one in five respondents (21 per cent) said they had volunteered. Women tended to volunteer more than men. Almost a quarter of those aged 60 to 74 said they volunteered, but only 17 per cent of the youngest age group. No association was seen between volunteering and mental health in people under 40.

The mental health scores were better (lower) among those who volunteered than among those who had never done so—10.7 vs 11.4—across the entire sample, irrespective of age. The average score was the best (lowest) among those who were frequent volunteers and worst (highest) among those who never volunteered. A positive association between volunteering and good mental health and emotional wellbeing became apparent at around the age of 40 and continued up into old age (80+). The researchers speculate that volunteering at younger ages may just be viewed as another obligation, while social roles and family connections in early middle age may spur people to become involved in community activities, such as in their child’s school.

The researchers were not able to gauge the extent of ‘informal’ volunteering, such as helping out neighbours, so couldn’t capture the full spectrum of voluntary activities. “Volunteering might provide those groups with greater opportunities for beneficial activities and social contacts, which in turn may have protective effects on health status. With the ageing of the population, it is imperative to develop effective health promotion for this last third of life, so that those living longer are healthier,” they write.

Previous research indicates that people who volunteer are likely to have more resources, a larger social network, and more power and prestige, all of which have knock-on effects on physical and mental health, they point out. “Volunteering may also provide a sense of purpose, because regular volunteering helps maintain social networks, which are especially important for older people who are often socially isolated,” they add.

Curtin University research professor Simone Pettigrew said the British results almost certainly also applied to Australia. “There have been some studies showing a relationship between volunteering and well-being among older Australians, mainly by Jeni Warburton from La Trobe University. Our (Curtin’s) random controlled trial that is close to finishing is aiming to test exactly this in WA by looking at both the physical and psychological predictors and consequences of volunteering among older people (60+ years). I’m hoping we’ll have some interesting results to share with you in due course,” she said.

By Frank Smith – HCC Blog Contributor

If you are interested in volunteering for Health Consumers’ Council (WA) call (08) 9221 3422 and ask for Lucy Palermo or email lucy.palermo@hconc.org.au

Press Ganey – what’s it all about?

You may have heard about Press Ganey, the patient experience survey being implemented in Perth hospitals including Royal Perth, Bentley, Fiona Stanley, Sir Charles Gairdner and Osborne Park Hospitals. The survey is sent out to patients two weeks after they have been discharged home and seeks feedback on a range of different measures. The question was asked about how this ensures a diverse response, e.g. from Aboriginal and non English speaking patients.

At our most recent Consumer Advisory Council Roundtable, we had their CEO, Amanda Byers provide a presentation on how their survey works. For those who were unable to attend, a video of the presentation is available below. It is just under 45 minutes long. The powerpoint is available here, however it is well worth watching the video as it makes sense of the slides’ information.

The third slide has a useful reflection on the suffering that a patient will undergo when in hospital. It notes that there is suffering unavoidably associated with both diagnosis and treatment. The avoidable suffering caused through defects and care in service is where the Press Ganey survey focuses. Press Ganey also highlighted that it was a validated tool which means it has had psychometric testing to ensure a reliable result.

Once the survey results are returned to Press Ganey they are analysed and the reports provided to the hospital. This process can see about a three to six month delay between the healthcare episode and when the feedback is provided to the healthcare service. Some hospitals such as Royal Perth are also implementing questionnaires that Community Advisory Council members undertake with patients to ensure a quicker response when issues are identified. The presentation did highlight however that service improvement can be supported through Press Ganey surveys using the example of a large hospital in Asia which transformed their health service in nine months. Despite this health service’s initial concerns about how well this would work, their performance improved significantly.

Women’s Health – Am I normal?

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA) Inc

This year during Women’s Health Week (September 5th to 9th) theme is ‘An I normal?’. Women’s Health Week is dedicated to all women across Australia, to focus on their health, learn more and take action. Every year Jean Hailes (Australian Women’s Health Organisation) holds a comprehensive survey of women’s fears and needs. They survey both consumers and clinicians. It is interesting to see the disconnect between what the consumers think and what the clinicians think (see summary below). This research highlights the importance of asking consumers about their health, their role in improving health care and service design.

The data collected includes; women’s top five health concerns, what women are keen to know more about, and what health professionals think women don’t understand. This year the findings have formed the basis of the theme, ‘Am I normal?’. Questions answered by the survey included:

  • “Why do almost a quarter of women consider weight management to be their biggest health concern – more than cancer (17%) and chronic pain (8%)?
  • Who do women most compare their bodies to?
  • Why do more than 65% of women not have regular sexual health checks?
  • Where does the survey reveal gaps between what women worry about and what health professionals think women worry most about?
  • How many women went on a crash diet in the last 12 months?
  • How often do women visit the doctor every year?”

 

The complete report can be found here.

 

The results of the survey found these were the top five health concerns for women.

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Compared to the top five health concerns as reported by health professionals.

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Every woman at some stage has asked themselves ‘Am I normal?’. It is a perfectly acceptable thing to question whether our health is what it should be. But sometimes it is easier to say what is not normal, as everyone’s normal can be slightly different, which is still ok. If you do have any fears or questions regarding your health, don’t put it off. Go and see your GP and have your questions answered.

HCC Consumer and Community Engagement Program offers support, education and networking for health consumers as well as health providers who want to be part of making a better, more patient-centred health care system. We believe in the importance of authentic, productive partnerships in health care to create the health service we all aspire to have. Click here to find out more.

World Hepatitis Day

Today (28th July) is World Hepatitis Day and an opportune time to highlight that breakthrough treatments are now available for the thousands of Western Australians living with hepatitis C. There was an interview on Radio National this morning with the Kirby Institute about improvements in hepatitis C treatments. Thanks to the advocacy work by Hepatitis Australia and negotiations by our federal government with the pharmaceutical industry, treatment is affordable and has more success and less side effects. As a nation we have the eradication of hepatitis C in our sights.

Hepatitis WA’s Executive Director, Frank Farmer said “New hepatitis C treatments which have a 95% cure rate, and can prevent liver cancer, liver cirrhosis and liver failure.”

Latest figures indicate that due to the cheaper and more effective treatments which have been available now for five months, a record number of Australians have already commenced treatment. More than 800 people in WA have accessed new hep C treatments, but it is estimated that 20,000 people are living with hepatitis C in the state. These people are missing out on treatment, either because they are unaware or have not spoken to their doctor.

“Ask your doctor about new hepatitis C treatments. Don’t miss out. You can be cured in as little as 12 weeks and with far fewer side-effects than previous treatments,” Mr Farmer said.

In terms of hepatitis B, it is estimated that there are 14,000 people living with hepatitis B in WA, but nearly one in two people don’t know they are living with hepatitis B and over 80 per cent are not receiving the care they need.

For more information about the new treatments, contact HepatitisWA on Metro (08) 9328 8538  Country 1800 800 070 or visit www.hepatitiswa.com.au

 

After cancer treatment ends – Where to from here?

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA) Inc

This week I sat down with Sandy McKiernan, Cancer Information and Support Services Director at the new Cancer Council WA offices in Subiaco, to discuss the upcoming August Community Conversation in partnership with Health Consumers’ Council (WA) and Carers WA, ‘After cancer treatment ends – Where to from here?’.

Why are you holding the community conversation?

Cancer Council WA has a strong commitment to engaging with the community. My division and I provide a direct service to people affected by cancer; be that cancer patients, carers or their family and their children. We feel really strongly about having opportunities for meaningful conversations. That is why having Carers WA and Health Consumers’ Council WA involved in this meeting is really important.

It is not unusual that, when someone is diagnosed with cancer, their partner is also suffering from a chronic condition. This makes it all the more difficult to have support in the home during treatment. This is when our services can be invaluable by providing them and their family with support.

What services do Cancer Council WA offer?

Cancer Council 13 11 20 service is there to support consumers, carers and family members who are affected by cancer. Our metro team and our regional teams of registered nurses with oncology experience can provide information and support on cancer and cancer-related issues. If we don’t provide the service they need, then our team can connect consumers to other providers that do.

Cancer Council WA want to engage with consumers for which we provide a direct service. We enjoy the opportunity to speak to, assist and support consumers who are affected by cancer.

What are the key outcomes you would like to achieve by holding this meeting?

We want to identify the gaps; What difficulties have they experienced after treatment? How can we continue to support them? What challenges have they faced? Are our current services meeting their needs? Were or are they being well supported?

We value any opportunity to work with those with lived experience. To be able to gain feedback to improve our services, is priceless.

Who can attend this meeting?

The meeting is open for those who are still receiving treatment for cancer, their carers and family; and those who have ceased treatment, their carers and family. It is also important to remember that carers and family members have a lived experience with cancer too.

With the state elections coming up, the voice of the people has become all the more important. As strong advocates for good public policy in cancer, we want to find out what is the voice of the people. We know there are system issues, but gaining a better understanding of the lived experience and what consumers believe could help changee things, is important.

Is there anything more you would like to add?

It would be fantastic if we could attract future consumer representatives that would be willing to talk about their experience in a more formal setting. There is strength in talking about cancer and, with an increase of consumer representatives, we can grow our interactions with other agencies, increase our network and continue to champion improvements to cancer treatment in the WA health system.

We hope people are willing to share and use this opportunity so that we can discover what is important to them.


Have you been affected by Cancer?

Cancer Council WA, in partnership with Health Consumers’ Council (WA) and Carers WA, invites those who have been affected by cancer, their family and carers to share their real life challenges regarding life after cancer at a Free Community Conversation on 24th August, on living well after cancer treatment. Click here for further details.

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Step Forward – Together

CommunityWest in partnership with COTA Australia has been undertaking a national project, trialling co-production in the aged care sector.

The Step Forward – Together project has ten pilot sites using co-production in their organisations over the last eight months resulting in great success as a method for service improvement and innovation.

The consumers involved in the pilot site projects have also benefited from being involved and have reported increased confidence, improved relationships with staff, increased sense of self-worth and value, a renewed sense of purpose in life, and new skills and knowledge learnt.

Brenda Bryant is an avid writer and poet and has been writing a blog of her time during the Step Forward – Together project. She was delighted to be asked to take a peek behind the scenes and contribute to the renewal taking place in aged care nationwide. Brenda is 85 years old and has accessed home care services provided by Novacare Community Services since having a stroke three years ago.

By being involved in the Step Forward – Together project, Brenda feels even more appreciative of the effort made by Novacare to genuinely engage with the older people in her community. Brenda believes there has never been a better time to be old and has written this poem about her time with the project.

There was an old lady from Oz,

Who enjoyed co-production because,

She could add the odd thought

Though it might come to nought,

And compare the ‘what is’ to ‘what was’.

 

To appreciate aged care today,

We must bring every mind into play.

If we co-operate,

We can add much more weight,

And feel glad ‘cos we’re having our say.

 

I encourage you all to take part!

Use your brain for its bright and it’s smart.

Just have your say,

And you may, yes you may

Cause something unusual to start!

In this wonderful new world of caring

There is nothing so vital as sharing…

 

The ten pilot site projects complete 31 May and CommunityWest will be disseminating the learnings of the project over the coming months, including a documentary and ‘how to’ guide and toolkit on co-producing aged care services.

For more information contact Kelly Gray, CommunityWest Consultant, (08) 9309 8180.

Thieves target Perth hospital patients

 

“Low life” thieves are targeting vulnerable patients at Royal Perth Hospital, stealing personal belongings, money and even medical equipment.

A freedom of information investigation has uncovered 124 counts of stealing from patients, their family and friends and medical staff at RPH between January 2014 and August 2015.

Incident reports from the hospital’s security logbook revealed dozens of thefts of mobile phones, cash and computers from patients’ rooms.

Some of the stealing occurred from bedside tables when patients were asleep, or out of their rooms having surgery or tests.

“Unfortunately there are some pretty low life people in our society who will take advantage of anyone in a difficult situation,” Health Minister John Day said.

“It’s completely unacceptable and appalling,” he said.

On one occasion an amputee’s wheelchair was stolen.

In another case a man was asleep at a table at the hospital’s café when a thief was caught on CCTV stealing a backpack he’d left on the floor behind him.

“When you are unwell or when a family member is unwell you are just under so much pressure and it’s just so hard to think that people are also having to cope with losing their valuables as well,” said Pip Brennan from the Health Consumers’ Council.

Nurses and doctors were also victims, with several reports of staff lockers broken into and bags, clothes and cash taken.

Security cameras outside the hospital’s emergency department filmed a man stealing a mobile phone left on a stretcher by a paramedic while he worked at the back of an ambulance.

“It’s just got to be the lowest of the low I think,” said Ms Brennan.

The security log also recorded 24 incidents of stealing from the hospital, including at least three cases when thieves took mattresses and blankets.

Vending machines were also regularly targeted, with at least one recorded case of a man caught using a drill, hidden in a backpack, to break open the machine.

RPH’s Acting Executive Director Dr Aresh Anwar said thefts at the hospital occur” as they do in any large public place frequented by thousands of people every day”, and he’s urged patients not to bring valuables to the hospital.

“Whilst we appreciate some individuals are facing tremendous hardship we cannot condone theft of any kind,” Mr Anwar said.

“We take security incidents seriously and have processes in place to ensure incidents are thoroughly investigated and appropriate legal action taken.”

The West Australian