Adherence and fun

McDonald’s was the only place she could meet, Mary said, and would it be OK if she brought her kids along? My initial thoughts were that it was going to be difficult to do a research interview in a fast food restaurant, and near impossible if she was also looking after kids. But as it didn’t seem fair to say no, I just downgraded the likely value of the interview.

Well, I got there, bought the kids Happy Meals, and started to chat — and it turned out as I had feared. Her two children were always in the way. The youngest, about a year old, was on her knee and between the two of us; he needed feeding but he wanted to do it himself. He was interested in my recorder but a little envious of the attention mum was giving me. The oldest, about three, was hiding under the tables, picking up food from the floor, getting in people’s way and just doing what curious three year olds do.

Mary was bouncing one child on her knee, trying to feed him while keeping the other one under control AND trying to have a conversation with me. I was getting despondent; this was turning out every bit as chaotic and unproductive as I’d imagined. In an effort to re-engage her, I described a bit of the project background: this was a drug that would have to be injected like her insulin…

“- Mixed in the same pen?

– No, in a different pen.

– But done at the same time?

em>- No, it would have to be done at different times.

– But the same amount?

– No, it might vary.

I could see in her eyes that I was losing this battle.

– Martin – she said – you’re joking, right? How do you expect me to do that? I don’t take my insulin when I should; I don’t even eat when I should.

– But you know that will make you ill, that you can get complications if you don’t take your insulin?”

Mary just rolled her eyes and looked down at her kids. I looked at them too and realised the enormity of what she was saying. Her kids came first, even at the expense of her health. She knew what she was doing, but she was making a fluid choice: when she could, she’d do those things that kept her well. But her kids came first and she was OK with that compromise. It wasn’t forever, but it was for now, and my second injection pen would have to wait.

She had taken a perfectly rational decision to not adhere to her doctor’s prescription, and it wouldn’t matter how much it was explained to her about the effect on her health, or how much we exhorted her, her behaviour was unlikely to change.

The challenge was ours: how could we design a drug delivery device that would work for people like Mary? Well, for a start it would have to recognise that her kids were more important to her than this therapy. Whatever we created, it must not get in the way or be perceived to get in the way of looking after her kids. If we did that, we would at least have achieved parity of a sort — we wouldn’t have made things worse.

So, could we make things better?

These days, safety should be a given and for most of the medical devices that we encounter there are robust processes for repeated and incremental checking for potential device use error and malfunction. And this builds on the lengthy clinical procedures needed to ensure the safety, tolerability and efficacy of the drug or therapy. Bad things can still happen and we need good post-market surveillance systems to get early sight of potential issues.

Safety is massively important but Mary would probably be surprised to hear us talk about it in anything but an unqualified sense: this is a must-have, a “ticket to the game”. Mary should take it for granted. We will not encourage her to use an insulin pen by simply saying it’s safe or even by making sure it is.

There are health consequences for all of us if we don’t eat well; Mary knows this, but it’s not the most important thing right now. In this context, the effectiveness of insulin and the pen used to deliver it is not going to persuade her to use it. Although she knows diabetes management is important, for her, a regular dose of insulin doesn’t make her feel noticeably different, nor does she notice the moderate fluctuations in blood glucose levels as these are largely asymptomatic. The serious consequences of poor blood glucose control are mostly in the long-term. There is very little about the effectiveness of the device and drug that will be immediately persuasive to Mary, that will help her to prioritise it amid the other demands on her energies.

By paying attention to usability we will reduce the barriers to use; we can make the pen portable, reusable, the needle as thin as possible. We can improve other aspects of the system that perhaps make it not quite as easy to use as it should be, such as testing blood glucose, determining the correct dose, and so on.

Her kids came first, even at the expense of her health. She knew what she was doing, but she was making a fluid choice

We could even increase the ‘drivers to use’ if we make the device simple, light and easy or, by taking these drivers seriously, take a much more direct approach and think of ways that use could be fun.

“Fun” seems an odd word in the context of an injectable therapy, but what we really mean is (as psychologists say) “intrinsic motivation”. Something fun, that brings enjoyment, surprise, or challenge arising out of the activity itself, rather than something you are motivated to do because you want the outcome of the activity, which would be an extrinsic motivation.

Too often we assume that people like Mary will find all the motivation they need in the rather vague (and extrinsic) notion of ‘future good health’. But that’s clearly not happening, and even with her ad-hoc and haphazard approach to food and insulin Mary is feeling OK right now… so no intrinsic motivation there either.

There are lots of extrinsic motivators available to her. She knows (and is motivated by the knowledge) that one day she may not feel so well, and may rue those missed opportunities for better control. Her doctor, her friends, and her partner probably all encourage her to comply. She sees the articles and the training material available to diabetics, all of which is great, but it’s all extrinsic.

We know that intrinsic motivators are generally far more powerful, so where are they? They are there, if we look. In her handbag, she carries all sorts of things she uses rarely but keeps with her because they look nice, or they feel good in the hand, or because she feels they make her look smarter or prettier. Used as principles for the design of the device, none of these will be the silver bullet that transforms her into a model user, but each will incrementally raise the profile of that device.

What else is she intrinsically motivated by? Right now we’d have to acknowledge that being a good mum is top, so can we borrow that motivation? Is there a way we can tie better blood glucose management to being a better mum? Can we involve the kids? Could they remind her, be involved; could it be part of a game, or educational? This is just the starting place for an exploration by brainstorm of the options that might exist.

There are several learnings here. Mary is not unusual and we probably all recognise her situation. They ebb and flow, the motivations we use to keep us doing the things we know we should. What will help is if we can design things that tap into more motivations — small and large, extrinsic and intrinsic. The key is not to assume that extrinsic motivation is all we need, and not to assume that intrinsic motivation, even fun, has no place in the design of therapies and medical devices.