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 !!!

[Kim Giroux]

@Alies-Maybee This is a great reminder for us as patient partners too, to remember that we represent Patients’ views and not only our own personal views. One person might like an app, another might, for all kinds of reasons, like a binder. Others might like an app sometimes, a binder at other times and the flexibility to use both, depending where they are at in their disease/condition cycle. Thank you for sharing the article.

[Jenna Kedy 0]

@Alies-Maybee Thank you for sharinng This is SUCH a powerful example of what happens when we actually listen to patients instead of just designing for them!
Because of course everyone said “build an app.” That’s the default answer in healthcare innovation right now. It sounds modern, scalable, exciting but this story is such a good reminder that innovation isn’t about what sounds good as it’s about what actually gets used. As someone who’s been navigating the healthcare system since I was a small kid, I can completely understand why patients chose a binder. I bring a notebook to all my appointments because when I'm already dealing with appointments, meds, pain, fatigue, and just the emotional weight of being a patient; the last thing I want is another app, another login, another system to figure out. A binder or notebook truly just fits into real life. You can throw everything in it including notes, test results, medication info and little pieces of your story that don’t always make it into charts. You can bring it anywhere, flip through it, and literally hand it to a provider and say “this is me.” No wifi, no passwords, no tech barriers and honestly there’s something really empowering about physically holding your own health information. In a system where I as a patient often feel like things are happening to me and not with me; my binder gives a sense of ownership and control that digital tools don’t always replicate. This also hits so deeply for me when I think about accessibility and equity. Not everyone has a smartphone. Not everyone has data. Not everyone has the capacity to learn a new platform when they’re already overwhelmed so when we default to “just build an app,” we have to ask; who are we unintentionally leaving out? and I think that’s the biggest takeaway here that if you ask providers, you get one answer.
If you ask patients, you might get a completely different one and if you don’t ask patients at all then you risk building something that looks impressive but doesn’t actually help anyone. Also, this feels like such an important reality check in the middle of all the AI hype right now. AI has so much potential but if we’re not starting with real human needs, we’re just creating more advanced ways to miss the point. The binder isn’t “less innovative.” It’s just more aligned with real life and to me, that’s what true patient-centred care and innovation actually looks like!

[Alies Maybee]

@Debra-Turnbull some truth to that Deb. My job in tech was as a product manager -- basically translating what the customers wanted into specifications the developers could code --- and back to customers when there were coding limitations. Essentially translation role.

[Alies Maybee]

@Jenna-Kedy-0 your story is such a validation of their findings. There is a sense with a shiny new tool (digital, AI, etc) that it can fix everything. It is the "to a person with a hammer, everything is a nail" syndrome.

[Debra Turnbull]

@Jenna-Kedy-0
Thanks for pointing out the equity piece Jenna! Always a consideration when we Patient Advisors do our work. It's just not about us; what about those without tech?

[Kim Locke]

@Chris-Johnston I also think a binder is something physical and something that older generations are used to using. It's sort of like voicemail now that we're in a digital era of health care records. It gives people a false sense of security.

My dad doesn't use his Outlook Calendar, he uses a Day Timer for all his appts and birthdays. Do you know where my mum keeps her address list? In the back of the phone book under to the main phone downstairs in the kitchen of the house. It's sort of like a coordinates bible, and has a very fancy outer cover. Some of my friends have "address books", for that, but I keep all of mine in a notepad file because I can just copy and paste when I'm making address labels.

I think maybe my generation and the generations before are used to carrying around physical things for compilations of records. It's like a DIY database. I don't know if you remember writing up recipe cards or your family members doing it? It's the same kind of thing, the DIY database again. I also remember using a typewriter to type up all my grandmother's recipe cards for my mum, once she passed, so she could file them in her recipe card box. I have friends that still have recipe card boxes, and write up the recipes on index cards.

It's something that can be touched and felt, and shown to others. I think that's the main reason why, and maybe just a small distrust of technology. My dad is very skeptical of the cloud. (If it's not saved on physical media, I'll lose it!)

I don't know how you convince people that digital healthcare records, in the cloud, are a better solution for them than a binder?

"What if you lose the binder?"
"Well, what if the cloud dies? What if I'm hacked?"

It's also going to be hard to convince people that the "binder" is not their one-way ticket to better healthcare or even to talk to a medical professional, whom they see as some god-like entity.

These things we need to discuss as well, because these are very common beliefs held by a lot of people in generations older than I am. Some are better with technology than others

[Debra Turnbull]

@Kim-Locke Your reflections made me smile.

I still use an address book - along with my Google addresses. We have printed copies of current and next months calendars stuck on the fridge with magnets. It's the only way my husband and I can communicate and update our appointments: doctors, my meetings, his days off, scheduled visitors...(crap! I have to make up that spare room!)... at a glance.

I am still a believer in electronic tech and the digital way. However, my backup system of choice is still paper. After a decade in IT I have learned that: fried hard drives, downed servers, corrupt databases, flaky routers, and the ever popular: "Can you restore my file from backup? I accidentally deleted it"... will cause you to lose your data. Even electronic backups do fail. It may be old tech but pencil and paper will not fail you.

[Jenna Kedy 0]

This post is deleted!

[Jenna Kedy 0]

@Alies-Maybee Thank you! For me, the challenges have so often been about not feeling fully heard and no matter how advanced the tool is, it can’t replace human connection. I think technology can absolutely support care but only when it’s built around real experiences like ours, not assumed solutions so hearing that my story helped validate those findings really means a lot. That’s exactly the kind of impact I hope it can have by helping ground big ideas in what it actually feels like on the other side. Thank you again for sharing this as it made me smile and reflect in the best way!

[Jenna Kedy 0]

@Debra-Turnbull Thank you for saying this!! This is exactly what I think about all the time. It’s never just about our own experiences as it’s about who’s not in the room too because even the best-designed digital solution doesn’t work if someone doesn’t have a phone and wifi/data. Equity isn’t just about access to care as it’s about access to how care is delivered too. I always try to ask “Who does this not work for?” because that’s where the real gaps are so yes; 100% with you on this. Patient partnership is about representing not just our voices, but also the ones that aren’t being heard yet!

[Kim Locke]

@Debra-Turnbull That's fantastic!

I don't think we can ever get away from paper, no matter how hard we try.

My important thingies are always printed out and put in a folder or stuck on my wall. This is strange because they also live in the cloud and on my calendar or in my email box. We seem to have to make more paper as time goes on. Do we have enough trees to make more paper for the future? My guess is that we need more something else to make paper out of instead of trees.

I have tried to make papyrus before out of a kit from the ROM. It was time consuming and things had to be perfect. I can't image industry doing this.

There are some things you just can't do digitally yet, like make soup.