Isn’t that a great description for PainTrain – My Health Summary (PainTrainMHS)?!

They are the words of Dr Paul Grinzi, Medical Educator, Royal Australian College of General Practitioners and Murray City County Coast GP Training. The full statement is:

In my role, I often am involved with teaching doctors about the management of pain, particularly chronic pain. I wish to recognise the importance of the work done by founder, Soula Mantalvanos, in the development of PainTrain. PainTrain supports people who live with ongoing complex pain by providing a resource for a more supportive appointment approach, and I have found PainTrain to be a valuable patient-controlled information sharing instrument that facilitates the patient-doctor relationship, which is so important in the long term management of pain.

I have personally viewed a patient summary and personal appointment notes as part of some pain education workshops. Pain Train was easy to grasp a detailed understanding of the patient’s experience and know what the patient was expecting from the appointment by viewing their personal notes. It facilitated the understanding of the patient narrative by doctors who have undertaken educational in pain management.

Recently I submitted a grant application in the hope of getting financial support for PainTrainMHS, and part of the submission material required support letters.

Boy, did I learn what professionals and registered users thought of PainTrainMHS. And it was so encouraging.

I didn’t get the grant (well, actually, I did at 9am, but then by 1pm, I was notified I had received an incorrect notification). It was a terrible letdown, but I’m at least looking forward to a one-hour feedback session one-on-one. I hope to resubmit in the next round.

But my point for the blog is to inform you of what practitioners and registered users think of PainTrainMHS.

The feedback might be of interest if you have thought of organising your health information and are feeling like you can’t face it, it’s too hard, there’s no point and a bunch of other reasons – one of which (and this was mine) is ‘as if my practitioner will ever read it!’.

It’s hard to relive the experience, and to gather the info – I get it. But one great thing (actually two) is with PainTrainMHS you will only have to do all this work once and you can do it at your pace. There’s no pain at the end of this task, just a wonderfully summarised story of your experience.

Maintaining the story from there is super easy as is privately sharing your information 24/7 (that’s if you have an internet connection 24/7, which is why I need the grant!).

So below is my brag material. Hover over the names to read part of the letters of support by these chronic pain specialists and patients:

Joletta Belton, Co-chair Global Alliance of Partners for Pain Advocacy 

Robert J. Echenberg, MD, FACOG – Owner and Pelvic Pain Practitioner
The Echenberg Institute for Pelvic and Sexual Pain

Deb Thompson – PainTrainMHS subscriber

John Quintner FFPMANZCA – Physician in Pain Medicine (retired). Pain Educator, Arthritis and Osteoporosis WA. PainTrainMHS Advisory Member

Dr Nick Christelis Director, Pain Specialists Australia – MBBCH, FRCA, FFPMRCA, FANZCA, FFPMANZCA
Pain Specialist Physician & Anaesthetist

Dr Susan Evans – Chair, Pelvic Pain Foundation of Australia

New PainTrain MHS

I’m thrilled to finally be able to announce that PainTrainMHS next phase is complete and LIVE!

I’m not thrilled that it took a pandemic to get people and practitioners empowered about managing health in a more digital way.

The latest development for PainTrainMHS was all about ease of use, so a totally new navigation menu with more functionality overall.

All the input areas that form your health summary are the same:

  • Body Map (pinpoint and describe the issue)
  • Characteristics (display the impact of the issue throughout the day)
  • Daily Living (a customisable personalised questionnaire)
  • Professional / Personal Life (a brief insight of your life)
  • Management (medication and treatment at this time)
  • Issue (the diagnosis and more specific information)
  • Current Snapshot (the situation and how you are managing)
  • Filing Cabinet (related files and documentation)
  • Personal Space (some personal notes)
  • Journey (timeline of main events)
  • Status Chart (mapping of mood, exercise, medication and stresses over time)

A significant function I added was the Access Token history list. This is where you can see when and how many times your health summary is viewed.

I make individual Access Tokens for each practitioner to see when each of them accesses my information. I love seeing that they have viewed my health summary because it means they’re interested and care about my health. I want to know that they understand the reasons for the next appointment and what I expect to learn in that appointment. It’s backing yourself… twice!

Soula PainTrain MHS -timeline

There are so many benefits to having a PainTrainMHS.

Aside from your own personal purposes of having all your information in one place, I find it really cathartic to build and document the story.

When viewing my enormous health timeline (pictured), I feel like I’ve put the information and experience somewhere – it makes it authentic and validates it.

Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information.

Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter.

All these feelings and activities are part of my pain management strategy – it’s not all just about treatment, it’s also so much about what I manage day-to-day, and there is so much detail in that day-to-day management.

What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good).

My experience is shown precisely and all it took was a glance.

Have a look at how lost I was in the first few years… it was awful!!!!

I’ve come a long way, and as you can see, now all my appointments are helping me somehow (all labelled green and good). They are not a waste of time – painstaking time that all of us endure enough of already.

PainTrainMHS has a long journey ahead. I believe in it as I do in my design and chronic pain experience – both are substantial. Yes, I’m a patient taking on a huge healthcare behaviour change but if it’s true that lived experience is valid for science and research to pave the way forward within the area of chronic pain, then this must count for something.

PainTrainMHS is in need of being made available for people without internet but that is going to cost well over 30k which I obviously can’t afford. I also struggle with the app situation as I want real-time updates across all devices and that is another costly feature.

For these reasons, I’d rather prioritise that PainTrainMHS works on all your devices for now albeit it relies on an internet connection (one thing at a time right?).

Any support is welcome in the area of tech development, evaluation and promotion. And I’d LOVE to hear from PhD students!!!!

Clearly, if you’re wanting to get your health summary started, then hit the button. If you need help, just holler we can do some zoom training or if you like learning in your own time, head to the PainTrainMHS videos.