#PatientIncluded innovation: the recipe for personal control
Op-ed I co-wrote with Tim Kroesbergen for nr 4/2018 of ICT&Health magazine. Translation(al errors) my own.
Tim Kroesbergen: last April I attended the Health Innovation School (HIS) on behalf of the IKONE Foundation, to give a talk about my life and the use of digital tools to promote my health. Among other things, I talked about my vacation to France, where my wheelchair toppled over and I broke both my legs. Unfortunately I don’t speak any French, I was in unknown territory and I felt powerless.
Fortunately I was able to contact ‘my’ doctors in The Netherlands digitally, who gave me good pointers to deal with the situation in France. Herko Coomans -policy adviser at the Ministry of Health and Health Innovation School participant- was moved by my story to start an innovation project together with some of the other participants.
Herko: Tim’s captivating story was the starting point of a journey to find an innovative answer to the question “how can personal health environments give people more control over their own health?”. First the team envisioned IGOR: a (currently) fictional application that helps people who are not able to travel easily due to phisical or mental limitations. IGOR (an acronym for I Go On the Road and bring with me…) is a virtual personal assistant that supports all aspects of preparation, travel and accommodation and aftercare.
Personal Health Environments play an important part of this: which medication and repeat prescriptions do I bring along, is a translated patient summary available, can I cantact my own care-team using video if necessary, etc. The first responses to this idea were positive!
One of innovation’s mantra’s is to ‘fail often and fail fast’: test your presumptions and learn from the responses. During a feedback session with Personal Health Record system providers, experience experts and innovators in the city of Tilburg, this was proven to be correct once again. However fun and useful IGOR may seem, it only solves a limited set of issues for a limited set of people. No entrepreneur who will commit to this now.
This provided the team with a valuable insight: as a user of digital health applications, you remain dependant on the functionalities that the industry provides, limiting your own span of control.
Control over your own health is a lot more then being able to access your own medical data. At its core it is about being able to fully participate in daily life despite your limitations. With this, the solution didn’t need to focus on healthcare -where most personal health record solutions tend to focus- but on daily life.
Control over healthy living
Tim: on June 12 Herko and the team presented their GoPGO solution during the graduation ceremony of the Health Innovation School. GoPGO is a way to use personal health data to get more control over healthy living on a daily basis.
Next to being a patient expertfor IKONE, I’m also an avid live music lover. Wouldn’t it be great if I could combine my current health data from my personal health system -like the trend of my pulmonary function, for instance- with National Weather Service data about the current and expected air quality, and a list of my Spotify-favorites-filtered live music events in my area? I’d get a ping if there’s a suitable performance this weekend. The National Weather Service, Spotify and the Event Calendar all have relaible API’s to connect to and get the required data in a safe and trusted way. The potential for connected services that will make our daily life easier, is huge.
In concept, GoPGO provides everyone the ability to create ‘recipies’, connecting different sources, including personal health data, into personal advice. You can share these recipies in a marketplace, so other people get the same kind of advice, based on their own data and personal preferences. And thus get real control over healthy living, and fully participate in daily life.
Tim: when I did my talk at the Health Innovation School in April, I had no idea that the participants would be inspired to turn this into an innovation project. Especially not how Team GoPGO have done this! To me, it is Patient Included innovation at it’s best!
See www.gopgo.nl for more info (Dutch).
Tim Kroesbergen is patientexpert for the IKONE Foundation. He won the 2017 ShakingTree Award for his patient advocay work. He has Osteogenisis Imperfecta: brittle bone disease.