I built a Parkinson’s app but now i have one regret
‘Parkinson’s ON’ is simple, free and available now
‘Have you taken your meds darling 💊 x’
I used to get this message, or some variation of it, several times a day from my partner in Parkinson’s, Helen. She would fill my pill box for the day before heading to the office, setting alarms on her phone and in turn reminding me throughout the day at regular intervals. She once joked, her most used emoji on her phone was the pill one 💊. At times it felt like nagging. It was a monotonous chore for both of us. But a necessary one.
Depending on my state at the time, my typical responses varied, from, ‘just now’, to a thumbs up emoji (with rough time taken so she could reset her alarm) or ‘i think so’. Most infuriating for her… was no response at all. Even if my fingers were in a state to reply, apathy in Parkinson’s can make replying to a simple text feel like an enormous feat.
Worse still, the cognitive impact of Parkinson’s was taking a toll. Planning, executive function and carrying out the simplest of tasks, like taking pills at x o’clock, were becoming a real challenge. It was one thing taking 4 pills a day when i first got diagnosed (at the time i could miss the occasional dose and not really feel the impact) to today, 11 years on, where my pill regime consisted of 15 pills a day at 5 scheduled times. Managing that around erratic sleep and the need to avoid clashing with meal times, was proving a near impossible task. I can’t afford to miss a dose now but as my own tracking demonstrated, i was frequently late in taking my meds (and sometimes early) ..and i would often pay the price for it.
Parkinson’s meds are time sensitive. That sensitivity grows over time. While being ‘On time’ can help keep you in an ‘On state’, erratic timing can throw you ‘Off’ with real consequences.
Those consequences impacted Helen too. Our time together would be ruined if i was having an off day. Keeping me on time helped both of us.
‘a good day for you, is a good day for me’ she would say.
Partners in Parkinson’s often feel helpless and often those of us living with the condition are all too conscious of this. As independence is lost over time, the burden of care often imposes its own burden of guilt.
That burden got me thinking. There’s got to be a better way.
I’ve always believed tech, when done right, can be a great enabler in daily life (i made a career out of it) and although the world of health was new to me, the prospects of digital health to help manage chronic conditions like Parkinson’s seemed a no brainer.
After all tech has played a role in every part of my Parkinson’s journey from the high tech scans to confirm my original diagnosis, to telehealth care during COVID & likely future DBS treatment.
But in terms of patient empowerment it continues to over promise and under deliver. Despite a growing number of Apps in recent years, Parkinson’s is still underserved compared to other conditions. Most solutions are either over engineered, rely on tech that’s yet to mature, or targeted at the clinician, not the patient. Often this results in a poor user experience, low adoption and low satisfaction.
Less than 1% of people with Parkinson’s use an app to manage their condition. In MS it’s closer to 10%
Basic pill management apps for example don’t cater for the unique time sensitive nature of Parkinson’s meds and the need to maintain regular intervals. Most seemed to do little more than act as glorified alarm clocks, with annoying reminders at fixed times.
Having worked in the mobile industry, i was all too familiar with the over hyped world of devices. The hardware required to track movement has existed in mobile devices for several years. The innovations in algorithms required to interpret the data produced, into something meaningful for movement disorders, has been a more recent development.
We’re nearing the point where data relevant for Parkinson’s care can be captured at scale in an objective, continuous and discreet way, moving us on from the crude clinical tests first used by James Parkinson’s over 200 years ago. I mean, 19 appointments and 11 years in, and a ‘touch your nose’ test is as sophisticated as it gets for measuring disease progression. Ok, its slightly more involved than that but you get my point.
Yet barriers remain for the kind of digital transformation that this kind of health care is ripe for.
Regulatory approvals, change in the mindset of clinicians and usability improvements are progressing at a frustrating slower pace… and i dont have time to wait.
Convergence of the consumer and medical device landscape will help drive this. It has to, as the current care model is not sustainable. Demand (number of people with Parkinson’s) is far outstripping Supply (healthcare resources) resulting is longer wait times to see specialist consultants. Something has got to give.
Even if i was able to see my specialist every month, rather than the current annual cycle, i’m not sure it would necessarily help. The snapshot view he gets in those precious 15 mins, is just that, a snapshot. For a condition where no 2 hours are the same (let alone 2 days!), its near impossible to get an objective view of disease progression. The resulting treatment is often a matter of trial and error.
So i set out to build a simple, parky friendly app that would not only empower me (a feeling that is often lost on us parkies) but ultimately allow for a better, more informed quality of care.
‘On’ is a common theme that comes up in Parkinson’s conversation and having mulled over numerous alternatives, it seemed like the natural name. Parkinson’s ON was born.
From the off (pardon the pun) i wanted the offering to have 3 key themes — ON Time (meds), ON Track (symptoms) & ON Top (self help) with some guiding principles that’s helped make Parkinson’s ON a unique offering:
- ‘Accessible for Parkies’ — whether its the smiley face rating scale, language & imagery used or the ‘tapping not typing’ principle, every aspect has been built from the perspective of someone with Parkinson’s
- ‘Appathy’ — whether its the physical or mental challenges, people with Parkinson’s have a different threshold for good user experience. We’re unforgiving in that respect and the app has been designed & built with that in mind
- ‘Available to all’ — an iPhone & Android app that doesn’t require a separate device and with simplicity at its heart
- ‘Affordable’ — the core service is and will remain free to all Parkies
- ‘Affirming’ — it’s amazing what a simple ‘well done’ message can do for Parky motivation. The app is littered with a feel good theme to it
‘i love the way it automatically adjusts the time of my next dose’ (user feedback)
‘i was better prepared going to see my neurologist’ (user feedback)
Initial user feedback has been very encouraging with 92% of trialists reporting they feel more ‘empowered’ and (subject to funding) there’s an exciting roadmap of new features to come. More on that soon.
So what’s the one regret you may ask?
Well, as clever as the app is, i actually miss being asked …
‘have you taken your meds darling 💊 x’
Parkinson’s ON is available now. Download for free on Apple App Store or Google Play Store
