My Health Record - You now have until 31 January 2019 to decide.

The opt-out deadline has now been extended again and a MHR will now automatically be created for you early next year unless you opt out by Thursday 31 January 2019. The following information is designed to help you decide if you want a My Health Record or not.

WHAT IS IT? 
My Health Record (MHR) is an online system holding key health information for each Australian who has a Medicare number. It is operated by the Australian Government. 

WHAT INFORMATION WILL BE IN MHR?
Health information such as your Medicare records, prescription history, test results, a summary of your health conditions and treatment, hospital discharge summaries, referral letters between health care practitioners, immunisations and allergies may all be uploaded to your MHR. This information may indicate if you have been tested for, diagnosed with or treated for hepatitis B, hepatitis C, HIV or a sexually transmissible infection. Some of this information will be automatically added to MHR when it is created. Other information is uploaded later by healthcare providers or you can add information yourself.  

WHO CAN ACCESS MY HEALTH RECORD?
When your MHR is created, all information in it will be ‘open access’ allowing it to be viewed by healthcare staff including: GPs, specialists, clinic and hospital staff, pharmacists and pathology labs. You can choose to set limits on who has access to your information.   

POSSIBLE HEALTHCARE BENEFITS 

  • Ensuring all of your healthcare providers have access to the same information about you can be helpful.This is particularly valuable for co-ordinating care for people with chronic health problems.

  • The MHR may help prevent drug-drug interactions, and save time in an emergency or other situations.

  • If you change your doctor, you can allow them access to your MHR so you don’t have to repeat your entire health history. 

  • You can provide access to others e.g. your partner, a family member, or Power of Attorney.

 POSSIBLE PRIVACY AND SECURITY RISKS

  • Your MHR by default will be set up with open access so that   healthcare providers can read the information in it. 

  • For people who may be sensitive about the disclosure of their hepatitis B, hepatitis C or HIV status, sexually transmitted infections, gender identity, sexual orientation, sex work and/or use of illicit substances there is a risk of unwanted disclosure of their private health information.

  • To keep your sensitive information just between you and the individual healthcare professionals you trust you can block access to all other healthcare providers. To protect your privacy this should be done as soon as the MHR is created.

  • Some people find it hard to set up and manage their  MHR on their own  and need someone they trust to help them.

  • Experts have recommended many changes to protect the security and privacy of your MHR data. Some changes - but not all - have been agreed to by the government but changes have not been completed yet.

DO YOU WANT A MY HEALTH RECORD?

YES – YOU WANT IN 

A MHR will still be set up for you automatically by the Government if you do nothing. 
Alternatively, you can register now.

Some health information will automatically be uploaded to your MHR and be available to health professionals to read.  

If you want to limit who sees your health information you must create a login through myGov and go into MHR to change the access codes.  Instructions are available on the MHR website. Go to: myhealthrecord.gov.au/for-you-your-family

NO – YOU WANT OUT

Before 31 January 2019you can opt-out by visiting the opt-out section of the MHR website. You will need your Medicare number and ID such as a driver’s license. 
Go to: myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record

 After 31 January 2019your MHR will be created. If you don’t want one you can ask for your MHR to be destroyed. (Under current legislation it will be retained, but not accessible. Under proposed legislation it will be destroyed). 

Go to: myhealthrecord.gov.au/for-you-your-family/howtos/cancel-my-record

STILL NOT SURE? 

It is important to understand how MHR works before deciding if you want one. If in doubt, opt out  - remembering that: 

  • You can opt out up to the 31 january 2019 deadline and join later if you want to - after you have weighed up your personal benefits and risks. 

  • If you don’t opt out by 31 January 2019 a MHR will automatically be created for you.

  • If a MHR is created and you decide you don’t want one (once laws are changed) you can ask for it to be destroyed.  

Go to: https://www.myhealthrecord.gov.au/for-you-your-family

Help fight stigma and discrimination

If you are over 18 and living with or have previously had hep C in Australia, tell us about your experiences of living with hep C. 

The Centre for Social Research in Health at UNSW Sydney is seeking people who have had or are currently living with hepatitis C to take part in a 15 minute online survey about experiences of hepatitis C, including treatment, community, wellbeing, stigma and discrimination.

World Hepatitis Day - Wrap up.

 poster from World hepatitis day 2018 - australia

poster from World hepatitis day 2018 - australia

This year the ‘WHY MISS OUT’ World Hepatitis Day campaign generated a high level of media coverage and social media engagement, with an extensive reach into the Australian population.

Hepatitis Australia would like to thank all involved, including our member organisations in each state and territory. As special thanks goes out to those individuals who shared their personal stories with the public.

Mainstream media articles reached approximately 6 million people across three waves. The first about declining access to the new cures for hepatitis C was issued on 24 July, ahead of World Hepatitis Day.  This was followed up by further coverage on World Hepatitis Day and the third focused on hepatitis B and aligned with the Australasian Viral Hepatitis Conference. 

The social media campaign which commenced 2 July focused predominantly on Facebook with hundreds of thousands of individuals reached.

Uptake of new hepatitis C treatment.

The Kirby Institute is releasing regular reports on the number of people initiating treatment for hepatitis C, using the new generation medicines.  The new generation medicines became available on the Pharmaceutical Benefits Scheme (PBS) from 1 March 2016. The reports show the estimated number of people commencing the new medicines generation medicines to treat and cure hepatitis C. The reports are available for download here or you can view the latest report by using the button below.

#StigmaStops

Stigma stops the majority of people living with viral hepatitis enjoying the quality of life they deserve. From social exclusion and inferior healthcare to denial of employment opportunities and verbal assaults, stigma and discrimination stop people living with viral hepatitis from fulfilling their potential.

According to a new report published by the World Hepatitis Alliance, more than 90% of countries surveyed reported stigma and discrimination to some degree.

  • Almost 3 in 4 respondents suffer from self-stigmatisation

  • Over half of respondents have been socially isolated

  • 1 in 2 people have experienced unjust barriers to healthcare

  • 42% have lost out on job opportunities or income

The report entitled “Holding Governments Accountable: World Hepatitis Alliance Civil Society Survey Global Findings Report” found that stigma not only affects an individual’s ability to access diagnostics and treatment but also impacts their personal life, mental health and ability to work, learn and maintain relationships. Yet, despite this, very few respondents felt that their government was effectively addressing it on a national level, making stigma and discrimination a significant barrier to the elimination of viral hepatitis.

As a community, we must come together to challenge misconceptions and be empowered to act on violations.

Make a NOhep pledge - there's no excuse.

The NOhep:NOEXCUSE pledge campaign is a year-round advocacy and awareness-raising activity calling on all people to stop making excuses and pledge simple actions to help eliminate viral hepatitis.  Click on the images below to make your pledge today.

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Support us.

Hepatitis Australia is a charity registered with the Australian Charities and Not-for-Profit Commission. Please contribute to our aim of a world without viral hepatitis by making a tax deductible donation. Find out more

Hepatitis Australia is a non-government, not-for-profit organisation that became incorporated in 1997. We do not provide services to individuals. To locate hepatitis services in your area visit the services page or call the Info line on 1300 437 222. Our members consist of the state and territory hepatitis organisations and other key services providing hepatitis services.

Page updated: 14 November 2018