My Life, My Dialysis Choice—a New Tool for Offering Informed Consent

A couple of years ago, I found myself sitting in yet another airport terminal waiting for yet another plane. As I was pottering on my trusty iPad, my natural curiosity led me to wonder, “what is ‘out there’ about dialysis” in the App store?

I plugged the word “Dialysis” into my App browser, expecting row upon row of App icons to appear. To my disappointment… even my horror…I found next to nothing. Further, what I could find was singularly unhelpful, did nothing to educate, and was utterly underwhelming.

I then wondered how many dialysis patients must do the very same thing as they wait in an airport, or—more likely —as they try to while away the aching and recurrent hours of dialysis.

What a golden chance is missing, thought I. Then, after the shock came the idea! I resolved to try and write an App: an App that would be useful, and would give hunters and gatherers of dialysis information a positive reward for their seeking.

I have worked together with Dori Schatell and the Medical Education Institute (MEI) in Madison Wisconsin for quite a long time now. Five or 6 years ago, Dori did me the honour of asking if I would try to answer the questions about dialysis principles that were often logged at MEI’s Home Dialysis Central (HDC) site.

First through an “Ask the Expert” message board (a daunting epithet for a simple nephrologist from a regional city in a far away country called Australia), and then, briefly, through a less successful and ultimately unpalatable format of FaceBook, I did my best to run the gauntlet between giving useful information yet not gratuitous advice. But, as we went along, it became ever more obvious that the hunger for information “out there” in dialysis land seemed insatiable.

I kept wondering why. Why are so many patients seeking answers? Were we, as a profession, so poor at providing them? Or do patients assimilate information better when doing so in their own time and space—rather than in the rather time-limited, anxiety-paralyzing capsule that can be a patients’ medical consultation?

We did a series of Webinars. I wrote answer after answer—often to like questions. And question after question dealt with the impact of dialysis on time, family, self and lifestyle. There had to be a better way

Dori—a medical writer by original “trade”—has always maintained that the impact of dialysis on lifestyle and the impact of lifestyle on dialysis choice is far more important to a patient than most of the stuff we nephrologists focus on… numbers, measurements, biochemistry, medications... And, of course, she is right! Utterly right! Spot on!

When I came to her about an App—MEI has a team of educators and IT gurus with expertise to burn—her first response was “yes,” and her second was “but it must focus on lifestyle first, second, and third: i.e., not on modality choices but on lifestyle choices. Through lifestyle “must haves,” the most appropriate modality to ensure the maintenance of that lifestyle should clearly emerge.

So, I set about writing a Dialysis Choice App: Version 1. Looking back, it really was a bit of a disaster, though I didn't see how much of a disaster till the team at MEI tore it into teeny tiny bits!

It was back to the drawing board, and version 2 with Dori now in the scripting lead. Next, came Version 3 (the first to be released online)! Each was an improvement on the last.

MyDialysisChoice is live online at http://mydialysischoice.org. It is there for you to play with, to evaluate, to critique and to suggest change. Please do. We need robust and thoughtful comment.

As for my own view? Well, I am not an American, and we do a lot of dialysis ‘stuff’ rather differently over here in Australia and New Zealand—indeed, very differently. As such, some of the ‘US-ification’ still rankles with me a little. But then, I understand that this version is aimed primarily at the US dialysis system. As such, I think it stands well in its space. Maybe in time, a UK, ANZ, Canadian or Chinese version may emerge. I hope so, and we encourage this, as long as new versions link to our original and credit us for the idea.

I think we are both satisfied that the end result does clearly focus on lifestyle. That was our aim, and I think our aim has been achieved. Not all questions will be pertinent to all users. If you are tainted by masochism, by all means try them all! See how you would rate each question by modality. The “full Monty” (you can Google that term!) should take about 45 minutes.

But, most will simply answer the lifestyle questions that matter most to them, as individuals. That is as it should be.

Please…look at the decision aid for us. Of course, it isn’t yet truly an App. That is the next phase. At the moment, while it has the “feel” of an App, it is web-based. If your feedback is encouraging, then App-ify it we shall.

Over to you.