Own Your Health Data

(Blog by founder My Health Story, Soula Mantalvanos, originally published March 27, 2023 on pudendalnerve.com.au)

I’m so happy that this question is making the rounds, finally!

Mine, theirs, whose health records are they?

Governments worldwide are rolling out online Health Record systems; the realisation is on for people to consider ownership of their health data.

Do you own your health?

Does your GP or specialist, or allied care professional own it? Or are you leaving it to a Government health record?

Not many can say they take ownership of their health. And, I mean, really own it like you own your:

• license,
• passport,
• insurance papers,
• credit card,
• transport registrations,
• birth certificates,
• home leases,
• titles,
• bank statements…

I think it’s insane that we take ownership of all that and not our health information.

The responsibility for our health information should be ours. And yet, our reports sit with various healthcare professionals – mostly our designated GP, and in the case of chronic illness, many, many others!

There are scattered pieces of us all over the place, our insides spread across;

• various radiology clinics (I was sent to a few providers in my first 4.5 misdiagnosed years),
• multiple specialists,
• with pharmacists,
• allied care providers,
• emergency departments,
• Western medicine records,
• Eastern medicine records,
• Alternative medicine records,
• online,
• offline…

…you name it; our insides are there! And can we access this information now? Nope!

Who should be responsible?

It’s no longer a choice. You!

If you prioritise your health and treatment, you cannot leave the responsibility to others.

Since encountering healthcare, we’ve been in the routine of ‘come on in and take a seat’. We have been presenting our cases, often being sent for tests before making another appointment to be provided with our diagnoses and treatments.

Who started this ridiculous passive-care model?!

I had a great awakening once when thanking my diagnosing physiotherapist, Anne-Florence Plante, who pointed to me and sternly directed her french accented reply,

‘Don’t thank me, Soula, you are doing it, YOU ARE DOING THE WORK’.

I didn’t understand her. I hadn’t done anything.

I didn’t realise what I was doing. I never realised how active I was in the role of my care until that point.

Have you realised how much you’re managing and driving yet?

I found my diagnosing physiotherapist through my own digging and research. I wrote to Professor Lorimer Moseley and asked for help.

I did that. And when Lorimer replied, I took his advice and contacted Anne-Florence…

(Below: Myself, Professor Lorimer Moseley and Anne-Florence Plante with Theo at the Pelvic Pain Foundation of Australia launch)

I got myself diagnosed. Hip, Hip, Hooray! Actually, it was far more exciting than that!!

I learned a lot from Anne-Florence (and you can too in this conversation I filmed with her), and not just about treatment.

This whole website is due to her arriving on my doorstep to share her life’s research about Pudendal Neuralgia so I could build the website.

More french accented sternness,

‘You can build this Soula. This is your work; you can help many people’.

I have. I did it. I’m doing it. I’m being responsible!

And, radical, ahead of its time, I went a few tens of thousands of dollars further and built My Health Story (MHS), so people could own their health, stories, and data and demand a better understanding of their experience to get the tailored care they need.

That is what I learned as the most critical step for pain management while reading Anne-Florence’s research.

My work has been creative communication; Anne-Florence was right to get me to build this site.

As a director of a design company, my life’s work has been creative communication. I summarised information and present it graphically to make it easier to understand in order to inspire action. I’ve done this for:

• Historical Museums
• Awareness for Dementia
• Mental health
• A gallery
• A cherry farm
• Medical aesthetics, and
• more

Presenting your information is vital to your care.

Chronic illness requires a patient-centred approach. That means:

You at the centre receiving tailored care and not listening to unhelpful scientific spew.

All together now:

Next time you participate in an appointment, remember you will be volunteering your health information and giving permission for the information to be stored and owned by the practitioner.

If you have a chronic illness, you’re more likely to leave the appointment with potentially more questions instead of the health information you need to take the next step.

You are paying for this service!

We keep participating in this routine.

I got sick of getting nowhere and the fragmented care was far from helpful.

And I was shocked when I learned I had no right to my GP’s notes who I had been seeing since I was 17 when I moved towns.

So since meeting Anne-Florence Plante when I began to appear from the depths of chronic pain hell, I’ve been working towards being independent of needing treatment and appointments.

We are alone with chronic illness, and that is hard. However, the only option is to step up and self-manage.

I have made it my priority to own my health, which meant I had to find a way to collate the information and present it at appointments too.

A better understanding of an individual’s experience brings on better care.

I have always owned my health information (well, the info I could get my hands on!).

But I had to make a system to do this.

My Health Story (MHS)

Unfortunately, nothing like MHS or My Health Record existed in 2016 when I first published PainTrain My Health Summary (as it was called then).

MHS is a more personal version of the Government’s My Health Record. You will drive the system I built, and you will build your story… and you will own it.

Did you know you can request your information at every appointment? In addition, you can request that your healthcare provider upload the information to your Filing Cabinet with MHS (see below).

Make your care revolve around you

And if you don’t have a health team interested in this concept, it’s most likely these healthcare providers don’t understand how to treat chronic illness.

I hardly ever see my team now. They tailored my care, so I don’t need them.

Insane was a tame way to describe my idea of self-managing and owning my health information:

‘What for? My information is with the GP; I love my GP; my GP is the best, they know all about me, they have all the info I need when I need it, my GP will never look at anything I give them’.

Well, as it turns out, healthcare has finally caught on to my idea, and it’s proven that the less you leave it to your GP and the more you get involved with your health management, the better chance you have at becoming your best self.

Many MHS users have caught on to this idea, – some have used the system for years.

Managing your information inspires you to learn more, read more, be active and partake instead of sitting back in the prehistoric state healthcare pushed us into – the passive seat.

Own it. Own everything required to be the version of you that you want to be.

Self-management – but chronic illness is overwhelming!

Chronic illness robs you of your independence and control, leaving you feeling defeated and mentally and physically drained.

Add to the endless appointments required; now, we also have to be considerate of healthcare systems under pressure.

Guess who gets the short end of the stick? We pay with our lives.

Perhaps healthcare systems were destined to burst their stitches because healthCARE was never built to care for people; it was made to keep people relying on it.

That’s not care.

It’s radical to think we need to manage our health information. And it’s foreign to the system we are currently in.

But now it’s time; your records are already on some shared server, so you must make some decisions.

And managing and remembering your health info only gets more difficult as the story gets longer.

More radicalism…

You must put yourself at the centre of your care to get the proper care.

Your health team needs to revolve around you and refer to your information; you are the best person to manage and communicate that information.

Scattered health information leads to scattered and expensive care, and it can be challenging for healthcare professionals to help you when they don’t have all the information they need.

Your words, explanation, and a thorough and accurate picture of your situation are essential.

So go get this.

Managing your health information is not as daunting now as technology advancements; systems like MHS can help you manage your health information easily.

For example, on a website and on any handheld device, I’ve made MHS functions that suit us – that’s tailored care! Don’t we need 24/7 accessibility and a way to document information as it happens and comes to mind? Yes!

MHS has many functions. You can:

• use the body map to pinpoint and describe your pain points
• describe the issue in various ways
• store your health files and important documents,
• make notes and rate treatments,
• make a timeline of your primary health events,
• control your public sharing,
• have a health story for your loved ones in the same place,
• and do all this as safely as possible.

It does more than that! Don’t be afraid to learn something new… something that is becoming the new way of healthcare.

There are so many Apps out there; start looking around and get your head around managing your data and owning your health.

Most of all, check where and how your data may be shared right now. You may need to push the stop button!

And if you need help with My Health Story, you know where I am…

Your health information and security

As someone investigated by insurance companies who tried to escape their financial support liability, I read privacy statements and have taken them seriously when forming MHS.

I decline offers to partner with organisations and businesses that want access to MHS data.

The MHS development team is highly experienced and takes every possible measure to protect users’ personal information and data on the website and on the App.

In addition to the development team building the system most safely, as a professional company, they are required to adhere to strict privacy policies, which have specific requirements about encryption, authentication and permission controls.

MHS website is hosted with WP Engine, one of the most highly regarded WordPress hosting platforms. WP Engine is committed to complying with applicable laws and regulations related to privacy and data protection in each country, taking a proactive approach to ensure they meet legal obligations.

The MHS app is offered in both Apple and Google App stores which have strict privacy policies that apps must follow to protect users’ private information. These policies require apps to use encryption, authentication, and permission controls to protect users’ data. In addition, Apple and Google regularly review apps to ensure they comply with their policies and may remove apps from their app stores if they don’t meet these standards.

Both Apple and Google take user privacy and security seriously and provide various tools and policies to protect users’ information in apps.

Understanding that no system can offer 100% protection from security threats is essential. Therefore, every online user must also ensure their information and data are kept private by using strong passwords, regularly updating software/Apps when necessary, and following security best practices as they present to them.

GoInvo’s 4 principles speak my language

1. Patients co-own or fully own every health data point about themselves.
2. Health data generated about the patient by a provider is co-owned by both parties.
3. Health data generated by the patient is fully owned by the patient with a right to possess, share, sell, or destroy.
4. All uses of a patients’ health data shall be consented in advance by the patient, other than uses required by law.

View the whitepaper which is also absolutely excellent.