It’s awesome and terrible at the same time in this day and age to be handed a medicine with a complicated protocol and given no ideal way to visualize or track the schedule and the feedback from the medicine. This can lead to “non-adherence” and “non-compliance” in clinical-speak, or “I don’t know if it’s working” or “I don’t know how and when I should take this” in patient-speak. For medication trials, it risks missing the signal of determining if it works. The awesome part is that now with AI, it’s easier than ever for someone to use AI to help them to think through what they need to track and customize it to fit their lifestyle and preferences to actually track what they are doing. But it’s terrible that we have to do that, and I recognize that not everyone will think to do this; have the time to do this, etc.
When one of my doctors and I decided to try a new medication for me, the conversation circled around the fact that there is no data for my use case. (A recurring theme). So, using their best knowledge of basic protocols for this medication used for other conditions, they outlined the approach they recommended. Take dose A. Then take dose A twice a day. Then take dose A once and dose B the same day, separated by at least X hours. Then take dose B twice a day. You can take dose B eventually up to Z times per day. Let me know if it works for you.
(Determining if it works for me is up to me, because it’s subjective.)
Even with all of my experience and resources, I came home feeling overwhelmed about implementing this medicine trial. Not in the least because the effect of this medicine is very time-specific, and also because the effect isn’t “do I feel better” but do certain things get better when using the medicine. I need to track those specific things. There’s the variable of taking a small dose to acclimate and minimize side effects and then ramping up; then there’s the assessing efficacy; then there’s trying to determine (if it’s working at all) what’s optimal.
It’s overwhelming to think about working my way through that. I need a spreadsheet for tracking, of course, except it’s complex enough that I wasn’t sure how to set up a spreadsheet for tracking this. There are too many variables to track (including non-med ones that influence the interpretation of efficacy)! Plus I need reminders to track outcomes at very specific time intervals. Like I built Scheduler Pilot when I needed the ability to move and reschedule treatments based on the relationship to each other, I need something more flexible than a spreadsheet, or manual phone alarms I have to set, that can track according to the relation to the time of the medication and tests I am doing.
An app it is, then. Luckily, I have enough experience recently with app development and various technical projects and applying this to niche, boutique or “custom” and “n=1” software that I know I can do this. I spent an hour with an LLM discussing all of the app specifications and building out a spec, then set the AI agent to work implementing this in an app and pushing a build to my phone for me to test and validate. It worked. I maybe spent an hour discussing; it spent 20 minutes building the first MVP; I spent 5 minutes using it and creating a list of feedback and tweaks; and the cycle continued. I now have a fully functioning medication trial app for complex medication protocols called Protocol Pilot, built and on my phone ready to go before the medication arrived at my door step. I can now track where I am progressing through the testing protocol, record time-specific feedback around different aspects of my unique scenario as well as medication side effects, and have all this data stored and reviewable not only in the app but the ability to export as json or a spreadsheet for review and analysis elsewhere. And, most importantly, there is a robust notification setup in this app. When I say I’m starting a task to test, it prompts me at the right intervals (there are multiple) to reflect and record any side effects of the med and whether the task is different with the medication peaking, plus any other time-anchored review periods I want to do. Instead of having to remember to track, it tracks for me when it’s time to track something. This is a huge benefit of doing this as an app rather than a spreadsheet.
Why “all this work” for a tracking app? Part of the reason it’s worth the “effort” is because I have learned that putting in the work up front to have a good system that works for me to track means I’ll actually track and record what matters. I dislike looking back and not being able to use tracked data because I didn’t track the right things, because it was burdensome. The whole point is building it into UIs that work for me.
The nice thing is, I don’t necessarily have to design it in a way that works for everyone else or indeed for anyone else. It lowers the threshold of action to build what works for me. Later, if someone else wants it, I can certainly share it and scale it and modify interfaces to support other use cases – but I don’t have to slow down a working prototype that works for me, when I need it, because I need to design for everyone else at the same time. And part of this is because the barriers to starting are so low, thanks to AI. (Another plug for you to try again with AI if you haven’t tried in a while, especially using agents and sub-agents where you can set goals and let it keep running and testing it’s work before it bugs you to review, so you can provide higher level direction without having to review line by line of code or fix trivial bugs.)
That being said, I do have in mind the ability for this app to scale and be used by other people, for example actually baking in an LLM to take an unstructured protocol (e.g. “take dose A then B then a plus b at XYZ time frames over ABC days, record JKL symptoms and watch for MNO side effects and record if those happen, when) and transform the app interface to reflect that protocol and when to record things. If this type of app sounds like something you would use for your use case – let me know and I’d love to collaborate with you to build in that feature and have you test it for your use case (whatever it is, you don’t have to tell me specifics). Email me any time – Dana+ProtocolPilot@OpenAPS.org – and let me know.