Why some people distrust digital health

People who have experienced stigma and discrimination in health care settings are more likely to distrust digital health services, a new UNSW study says.

The report surveyed more than 2000 people across Australia from April – June 2020, including 600 people classified as members of one or more populations affected by blood-borne viruses (BBVs) and sexually transmissible infections (STIs).

People with HIV, trans and gender diverse people, sex workers, and gay and bisexual men reported the lowest levels of trust in digital health care services, such as My Health Record, and the most frequent experiences of stigma.

While these groups reported better knowledge of My Health Record than the general population, they were much more likely to report opting out.

“These communities are highly engaged, well informed and notably reluctant to put their trust in some aspects of digital health,” says Associate Professor Christy Newman, one of the lead investigators from the study.

“This suggests that an understanding of the potential benefits of digital systems like My Health Record did not overcome the doubts that these communities considered when opting out.

“More meaningful consultation with affected communities and the peer-based organisations that have their trust is required to ensure that communities affected by stigma and discrimination are not left behind when it comes to digital health.”

Do you trust digital health services? Have you opted out of My Health Record? Why or why not?

5 comments

It is not surprising. The issues are about privacy and confidentiality and who has access to the data. If these have been breached in the past (indicating stigma and discrimination) then why would people trust the 'system'. 

Having said that, people are already giving away their health data for free to corporate conglomerates such as Amazon, Google, Apple etc with their wearable fitness devices. And yet that seems 'acceptable' to many!

Yep-- I would not trust such things or the health record --at all can never be sure if your GP has updated a list of your medications and that could be a BIG problem

Sadly "My Health Record" has been a dismal failure in my case, as I've whinged about several times on here.

Suffice to say, I've given up on it and keep my own records.

Great idea IMO, but just didn't seem to work in practice.

That is like my problem, GP send a refferal to the specialist this week and details were not correct when the secretary asked me on the phone!  

Celia,   l was recently released from our local hospital and given a sheaf of paperwork   and most of the "facts"contained it it were incorrect. Amazing how they can and do get it so wrong, l queried this and was told that that was as the doctors had entered.  Amazing that there are not more deaths etc in hospitals due tto incorrectly entering information

Scary stuff jethro63.

Yes, you have to question EVERYTHING as Drs will give you mediations that are incompatible and can either kill you or damage you --ie kidney dialysis --  as they never check which med is ok with what -- ASK THE CHEMIST AND LOOK IT UP YOUR SELF AS WELL before you take anything.

Doctors bury their mistakes.

PlanB - I always query the doctors about my tablets. I'm on BP Tablets as my BP readings are very high when taken by the Doctor. When I take it at home all normal. Anyway he decided to raise my BP tablets from 16mg to 32mg. I queried this and said that if I take the 32mg and get in my car and drive I could suddenly plow in another car because my BP suddenly drops. I said, "Can I take 1/2 in the morning and 1/2 in the evening, would it be okay"?

"Yes that's fine". If I didn't ask I could have caused a serious accident.  Always check with your doctor when in doubt. 

5 comments



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