Listening leads to a binder not an app - thoughts?

[Alies Maybee]

I came across this interesting article by Lucien Engelen on listening to users and what resulted in a binder instead of another app.
Take a look.

[Debra Turnbull]

@Alies-Maybee
Brilliant...!

A true reflection of the reality of patients dealing with the Canadian health care system.

Bizarre... someone actually listening to patient/users...

[Chris Johnston]

@Alies-Maybee @Debra-Turnbull

I love the concept of listening, but I think they missed the opportunity to go deeper and ask why?

There are many reasons that patients might choose a binder - many reasons that point to problems with existing tech such as errors and inaccuracies, lack of access, lack of interoperability, lack of transparency, lack of trust etc. Adding a new app won’t fix any of that, at best it’s a bandaid (like the new NHS Digital Front Door - a bandaid of epic and dangerous proportions). At worst it’s a new layer of glitches, errors and incompatibility to add to the stack.

A binder represents something you have physical control over for adding, deleting, amending, and who to share with - who doesn’t want that?

But choosing to create binders is a shortsighted appeasement that still doesn’t address the issues. The sense of control it offers is entirely illusory since the physical contents of the binder will inevitably drift from the electronic data from the moment it’s printed, and as a patient you still have no actual control over content of or access to your data in electronic systems - and that can have serious implications for health as we know.

It’s like asking if you’d like a glass of water or a bottle. You might choose a bottle in the moment if you know that the local water supply is heavily contaminated, but what you really want is access to clean drinking water as a basic right without having to rely on expensive, non-sustainable, bottled water full of nanoplastics doing untold harm to your metabolism. But if you don’t get asked why, your choice can be interpreted to mean far more than you intended without your knowledge or consent.

It’s not just the questions we ask, but those we fail to ask, or choose not to ask, that shape outcomes that miss the point.

[Debra Turnbull]

@Alies-Maybee
Okay, this only makes sense to me and you Alies ('cause: programmers... can we talk). Let me try this again...

This is a true reflection of how programmers, software folks and digital health tools producers think. Their products are aimed at the people that can give $$$ for their efforts: physicians, clinicians, researchers, healthcare administrators, LTC directors, etc. All of these people are behind the white walls of care - and hold the purse strings. We, patients, are on the other side of the wall.

We are experienced in how their system works, and have developed our own ways of dealing with it. Our way is efficient: it provides the info we need to communicate -instantaneously. That's right... the binder. I have yet to see a single doctor's office where I can successfully plug in my phone, download my digital twin (and only selective data fields) transfer the data (securely!!) directly into my chart. (I can fantasize, now can't I?) Aaahh... Utopia...

Something else that needs recognition - programmers will never ask patients what they want. Why? Fear.

They are very comfortable working in their own environment - interacting with other code-monkeys like themselves. They have never had a need to talk to customers - there are other people that do that for them. Their environment mimics the clinical realm perfectly. Only recently have clinicians begun working with patients. Our care is something that is being done with us; instead of to us.

Many a project I have seen go the way of the Dodo. Programmers thought of a great idea! only to have customers never use it. Why? the end-user never found it "useful". Programmers never thought of consulting the endusers to see if the product met their needs.

The solution - the way I see it - will be to hold the care system accountable for their software (apps) choices... specifically clinicians,

AND the amount of money that they spend on it !!!