My Health Record Opt-out Hard For People With Disability
Thursday, 15th November 2018 at 8:35 am
The opt-out period for My Health Record is being extended until the end of January, but disability advocates say more resources are needed to help people with disability make an informed decision.
The opt-out period was due to close on 15 November, but on Wednesday, the Senate passed One Nation Senator Pauline Hanson’s motion of extending the deadline to 31 January. The extension was then approved by Health Minister Greg Hunt hours later.
Therese Sands, co-CEO of People With Disability Association (PWDA), said she had strong concerns about accessibility not only with the opt-out system, but general information and resources available to people with disability on whether or not My Health Record (MHR) was a good idea.
“We are very supportive of a longer time frame, as well as increased resources, to assist people with disability to make an informed decision about whether they wish to have a MHR or not,” Sands said.
She said some would benefit from having their health records easily available through MHR, but they needed to have support systems in place to help them fully understand the system, and how they could control their own information, especially with the privacy breaches that had occured.
“Some are very concerned about having their medical records available to others, and are concerned that this could be detrimental to future medical treatment decisions, and being able to provide consent to medical treatment,” she said.
Earlier in the year, Vision Australia raised their “extreme frustration” over the opt-out process because it couldn’t be accessed by blind people, or people with low vision, but after meeting with the Australian Digital health Agency, changes had been made for better accessibility.
“Everybody should be able to control their personal information and people who are blind or have low vision should be given the opportunity to participate in this process with the same ease and convenience as anyone else,” Begley said.
Sands said it was vital, if the opt-out period was extended, that the MHR team made more resources available to help people with disability make a decision if they wanted to leave MHR.
“There just hasn’t been enough time for people with disability to work through all the issues… but having easy English, Auslan, audio information and access to independent advocacy support would make a huge difference,” she said.