Actually, My Health Record and PainTrain aren’t in competition. They are two very different online resources.
There’s no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record.
Are you staying in or opting out?
I opted out.
And not because I think My Health Record is a poor concept – it’s a great idea!
My reasoning
Remember I’ve made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.
So my one single reason for opting out is that I don’t trust our government with my information.
You might think this statement from someone who has most of their life on the internet is strange. But what I share on the internet comes directly from me and I choose what I want to share as well. The communication I make is to advocate for people living with chronic pain and for Australian injured workers.
I lived through the scenario and experienced first hand how information can be abused by our government and the bodies they assign to do some of their dirty work (eg WorkSafe, WorkSafe agents and other insurers).
That’s where my personal doubt for the privacy of my information on My Health Record comes from.
It’s bad enough insurers have the backup of government legislation to instantly force people into a medico-legal battle, now My Health Record also provides easier access to personal medical files. I’ve had an insurer hire an investigator to film me on the street in order to gather ‘evidence’ that I was not as incapacitated as I claimed (and apparently walking was valid evidence for the Worksafe agent to stop my compensation and throw me in a medico-legal nightmare!).
Once trust has been abused in this way, the trauma stays forever (and actually it’s been loads more than once in my case within the workers compensation system).
Sick to my stomach
This week when I heard I had a My Health Record, it actually made me feel a bit sick thinking an insurer may have access to my personal records. I’ve had a specialist note incorrect details in some reports (ie one specialist noting I was planning an extensive walking holiday!!).
And there’s no statement our government can make that will give me the confidence to believe they wouldn’t hand over the information. I’ve read the My Health Record privacy policy. Here’s where my bells went off:
There are limited other circumstances in which your information may be collected, used and disclosed under the My Health Records Act. These limited circumstances include the provision of indemnity cover for healthcare providers, disclosure to courts and tribunals, for the purposes of coroner’s investigations, and for law enforcement purposes.
Seeya My Health Record!
Back to the differences
Like most of our lives that are moving online, so too is health. And so it’s important to know what information and resources are out there.
The newspaper and television are no longer our main sources of information. We have to get online and in fact, the most important reason to get savvy is that we all need to be responsible for our chronic illness.
- You need to learn lots of stuff
- You need to keep up with the lots of stuff you learned!
Exhausting. So that’s why the resources you choose should save you time, save you money AND save you excess pain!
Below are a few of the differences between My Health Record and PainTrain – My Health Summary and I’m outlining these because I do need to point out that they are two different resources. Mainly one is government run and FREE and the other is patient made, driven and $29per year.
My Health Record:
- Auto opt in, manual opt out
- Is free
- Contains shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports (that you should check)
- Provides access to your medical information to health professionals (and other people of your choice like friends and family)
- Is Government generated and managed
- Provides national accessibility to your medical records
- May provide your medical information in limited circumstances for the provision of indemnity cover for healthcare providers, disclosure to courts and tribunals, for the purposes of coroner’s investigations, and for law enforcement purposes
View My Health Record
PainTrain – My Health Summary:
- Is opt in
- Costs $29 per year for an unlimited amount of health summaries
- Is patient made and driven
- Is an independent commercial product
- Is more specifically created for people living with pain
- Aims at helping with communication between the person and their pain team/s
- Aims to empower people living with chronic pain
- Aims to save time, appointment time and save repeating the traumatic pain details
- Is where a person can create a complete health summary/summaries
- Only contains the information a user personally chooses to include
- Gives the user total control over accessibility
- Takes all precautionary measures possible to make the website safe and protect the data
- Was founded by Soula who has experienced information abuse and therefore would NEVER share user data
View PainTrain – My Health Summary
(Originally blogged at pudendalnerve.com.au by Soula Mantalvanos)
