Positive Life has concerns about the impacts of stigma, privacy, and potential legal impacts or criminalisation of certain groups of PLHIV with a My Health Record (MHR).

PLNSW My Health Record 6

Potential risks and impacts posed by the My Health Record (MHR)

Some of these risks and impacts include:

• linking health data across systems and passing information to law enforcement authorites even without evidence of a crime
• decrease in confidentiality between PLHIV and their doctors
• breach of privacy without explicit and informed consent
• accessing your health data in the preparation of legal proceedings before any court or tribunal
• secondary use of your MHR by researchers and commercialisation of your health data and
• benign or active surveillance of individuals or populations.
 
Positive Life has concerns that these risks and impacts will have disproportionate effects on some PLHIV with a My Health Record (MHR) more than others. For example, if you are the only woman living with HIV from a certain postcode, accessing confidential data could unintentionally disclose your HIV status.
 
If you share any of these concerns, Positive Life is suggesting PLHIV opt-out of My Health Record until your concerns are allayed. If in doubt, opt out!
 
There will be an opportunity to opt out from the 16 July to 15 November 2018 if you do not want a My Health Record.

PLHIV who could benefit from a MHR:

• those who live with three or more diagnosed medical conditions and/or see more than two doctors
• who self-manage their own care across generalist and specialist health care provders
• who are 55 years and older and/ or have multiple hospitalisations
• who do not have a current or previous drug or alcohol history
• who are not sexually active or are in a monogamous relationship and able ot maintain viral suppression (UVL)
• who are living with mental health concerns and diagnoses such as HAND, memory and comprehension problems
• are highly mobile (eg fly-in/ fly-out workers or people residing, working and recieving health care across numerous states and territories)
• who take reasonable precautions consistently (condoms, disclosure and negotiation)

We suggest these PLHIV opt-out of MHR:

• PLHIV who are sex workers
• PLHIV who currently or have used drugs and alcohol (licit and illict)
• PLHIV with less than two diagnosed medical conditions and see only one or two doctors
• PLHIV who live with a criminal history or are involved with the criminal justice system
• PLHIV who are sexually active and non-monogamous, polyamorous or single
• PLHIV who receive a sexually transmitted infection (STI) diagnosis and treatment every six to twelve months and are not taking reasonable precautions.

Resources

You are welcome to take copies of the text and imagery below to share this information. Click on the image to download a full size image for social media (facebook, twitter, etc)
 
refugees 280x150 My Health Record will pose risks for people who are immigrants and refugees especially those who live with HIV! Positive Life recommends PLHIV opt-out until these impacts are resolved. If in doubt, opt out! More info: www.positivelife.org.au/latest-news/electronic-health-data.html
aboriginal 280x150 My Health Record will pose risks for Aboriginal people especially those who live with HIV! Positive Life recommends PLHIV opt-out until these impacts are resolved. If in doubt, opt out! More info: www.positivelife.org.au/latest-news/electronic-health-data.html
sexworkers 280x150 My Health Record will pose risks for people who are sex workers especially those who live with HIV! Positive Life recommends PLHIV opt-out until these impacts are resolved. If in doubt, opt out! More info: www.positivelife.org.au/latest-news/electronic-health-data.html
women 281x150 My Health Record will pose risks for women especially those who live with HIV! Positive Life recommends PLHIV opt-out until these impacts are resolved. If in doubt, opt out! More info: www.positivelife.org.au/latest-news/electronic-health-data.html
dius 280x150 My Health Record will pose risks for people who inject drugs especially those who live with HIV! Positive Life recommends PLHIV opt-out until these impacts are resolved. If in doubt, opt out! More info: www.positivelife.org.au/latest-news/electronic-health-data.html 
 
For more information about what is a My Health Record and more, please click here
For a Factsheet about the My Health Record, please click here
 

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