Do I have the right to have my medical information?
• Information about you is your information (if you want it). You have the legal right to this information.
Why do I have to fill out a freedom of information request?
• Traditionally the results of tests such as X-rays or blood tests done on you have only been sent to your doctor. So sending documenets and results to you is a new concept.
• In order to have a clear request from you that you legally want information about yourself, organisations may request that you formally request your information.
• Using Freedom of Information is simply the organization using a clear legal process to support your request.
Who can see my information?
• You have the control of this, in the "profile sharing" screen you can add and remove people you want to access your profile
• You control whether you want, emergency access via the wallet card.
• It is all under your control.
Is the MEDENOTES card like the Australia Card?
No. The Australia card was a Federal Government initiative that was mainly designed to form a link for social service entitlements. This was perceived to be a threat to civil liberty by many people and the idea was dropped. MEDENOTES is not a Government initiative, provides a personal record for you (the records can not be seen by anyone else without your consent) and only applies only to medical information.
The aim of MEDENOTES is to Make you safer in an emergency, improve your medical care and to put you in control of your medical information.
This is quite different from the Australia card.
How is it that setting up a MEDENOTES record is free?
We realize that nobody likes to pay all the time for everything. We all like something really good that is free.
MEDENOTES needs to raise some funds to cover costs. MEDENOTES has some advertising on the site and we felt that most people would prefer this to having to pay a subscription. The advertisers can’t see any of your information. In contrast to Google type advertising (where advertising is targeted at your personal profile) there is no link whatever between your personal information and the advertisers in MEDENOTES. We simply permit some approved advertisers to display on the site.
How does the MEDENOTES wallet card work?
• The wallet card has a scratchy strip covering an emergency code.
• The card also has the MEDENOTES web address prominently printed on it.
• When the doctor enters the emergency code the system will ask him to identify himself and then provides the medical facts that you have previously identified on your MEDENOTES site as being important.
• It is simple for you to confirm that the card is secure – it will be in your wallet and the scratchy cover will be intact.
What happens if my MEDENOTES wallet card is scratched by accident?
You will need to order a new card (which will have another, different secret code under the scratchy strip.
While this card is coming you have the option of inactivating the emergency access to your site (or can just keep your card very safely with you in your wallet).
What happens if I loose my wallet with my MEDENOTES card in it?
You simply need to access the MEDENOTES web site, log on and click the ‘deactivate MEDENOTES card’ button. Then nobody can access the site using the emergency code under the scratchy strip. If you find your wallet again and the card is intact you simply need to reverse the process and click the “reactivate’ button.
How does information get into my MEDENOTES record?
There are a number of ways that information can get into your record:
• You can type in notes directly
• You can attach electronic records (such as Word files or PDF files)
• You can scan paper documents and then attach these files
• Automatically, after signing a Freedom of Information form with a participating hospital or pathology provider
What information should I put in to my MEDENOTES record?
• Medical Condition - Anything, which you know about your medical condition including allergies and any treatment you would not want for any reason.
• Discharge Summaries - Ask your doctor for copies of your discharge summaries (these are sent to your GP after every hospital admissions). These are a good synopsis of what has happened to you.
• Prescriptions - Also prescriptions can be very helpful (scan in your prescription or ask your chemist to give you a print out of what they have given you (they can easily do this) and scan this.
• Pathology and X-ray results
• Other Medical Past History - Also if you have a rare condition a good medical paper which describes your condition can be really useful.
• Details of your Medical Enduring Power of Attorney – and a statement of choices if you have one
Is my personal information on MEDENOTES really secure?
We have made MEDENOTES as secure as we can make it, while still making it easy to use. Unfortunately, nothing is ever 100% secure but we do our best.
Below is a list of key security measures in place:
• Password protection – You can only access your MEDENOTES profile with your password. This is a traditional weakness in security, you must keep your password secret and hard to guess – use numbers, letters, capitals, lowercase, special characters, make it long (more than 8 characters)
• SSL – All data between the website and you is sent as encrypted data, so that no one can eavesdrop on your data.
• Audit Log – Unlike other sites, the MEDENOTES alert log will tell you if anyone has accessed your profile.
o All logins are logged, so you can review all the times that you logged in to make sure no one else has tried.
o All changes are logged, so you can see who made what changes and when.
o All logs include the IP address of the computer which logged in or made changes.
• Privacy – We do not share any information that we hold with anyone, this includes any research. All employees of MEDENOTES have signed a data privacy contract which prohibits them from purposefully searching records or transmitting data.
Remember MEDENOTES is entirely voluntary. If after reading about our security measures you remain uncomfortable about the security of your personal information, refrain from signing up and please let us know about your concerns. If you already have a MEDENOTES record we can easily delete this with all of your data – you just need to ask us.
Is it a risk having my medical information sent electronically to MEDENOTES?
Your medical information is almost certainly being sent electronically to your doctor already. The only thing that is different when you elect to have data sent to MEDENOTES is that you get the data as well as your GP.
Since Australian citizens don’t have a unique number (we rejected the idea because it made many people felt that this infringed their civil liberty), it is more difficult to link patient reference numbers together from each health provider. This is why your personal details and various patient reference numbers need to be verified before you can automatically receive your health information. This prevents other people from being able to receive your results.
What is the risk if I see my own personal medical information?
There is always a risk that the information that you see might be distressing.
The doctors may have said something about you that you don’t like.
If you set up your MEDENOTES to automatically get things like your blood test results you could see worrying results (such as leukaemia).
If you feel that you would rather hear your results from your doctor, you may simply abstain from activating the HL7 feed. In the future we will provide additional measures to alert you of such situations by:
• Delaying results up to a month
• Displaying a warning if results are considered especially sensitive
Do doctors approve of me having a MEDENOTES record?
Doctors are all different and MEDENOTES is a very new idea. Some doctors will embrace the idea and see the value to you (and to them). Others may feel that MEDENOTES changes their role as the keeper of your medical information. Some may also be concerned that you will not understand the information or may be distressed about what you see. But we are strong believers in giving you power over your information.
Can I set up a MEDENOTES account for my child?
No, not at this stage. Because of privacy concerns we can only set up accounts for people who are able to give their own consent. We realize that many parents will want to set up accounts for children and we are actively working with authorities to work out how to do this. As soon as we have a solution we will let you know.