The link between a hot summer day in September and legislation in October

We enjoyed some nice hot summer days in September, breaking new heat records in the process. But imagine you have a Diabetes Type 1 condition. The temperature will pose extra challenges for you.

Baren Heeren

Programma manager HereIsMyData 

We enjoyed some nice hot summer days in September, breaking new heat records in the process. But imagine you have a Diabetes Type 1 condition. The temperature will pose extra challenges for you because warm weather conditions significantly influence your (insulin) doses. Unfortunately, you do not know to what extent so you’re hesitant undertaking activities such as going to the beach. That is why you check your app. Since you enjoyed other warm days before and registered your glucose levels and insulin doses, the app is able to see patterns on a warm day. Of course, it incorporates other variables as well. Carbohydrates count and glucose level are added real-time to get an actual advice. This allowed you go to the beach, enjoying a care free, and more important, hypo and disease free day.

Our Dream for the future

This is what we envision an app should be able to deliver nowadays. We have joint forces with Philips and are currently testing a first version of a Diabetes Type 1app and in the mean time several commercial parties offer a solution as well. See for example the initiative or the recently FDA approved artificial pancreas from Medtronics. What has this to do with legislation? The described scenario is not common practice yet, but the number of initiatives in this field is growing rapidly. Legislation tries to adept to new developments and address issues that arise from these new developments, in this case data ownership, responsibility, security and privacy. October 4th, the Dutch senate voted in favor of the new law on rights for patients on electronic data processing. The law states that the patient has the right to grant access to his medical information, stored by one care provider, to another care provider or category of care providers. At the same time, patients can ask a healthcare provider for a digital copy of their medical file, or a part of it. The intention of the law is to give patients or clients more rights to, and privacy control over data. We want to take a closer look at two main parts of this law to check how it keeps track with developments in healthcare. The first topic is electronic data sharing, the second part is how to manage permission to access to this data. This blog focuses on the first topic, the latter topic will be covered later on.

So, in the described scenario, you generate the data yourself and get instant benefits. If it is beneficial for you in your day-to-day life, why wouldn’t you share your data with a third party? And I imagine you want to share this information with your doctor as well, because you want reassurance that your medication level still fits the long-term goals of preventing complications. Since your doctor can access this data (almost) real time as well, you expect him to contact you as soon as he sees something out of the ordinary. And yes, it is very plausible this latter job will be done by artificial intelligence in the near future. In essence, the availability of large amount of continuous, real time data, takes us a step closer to shift from reactive healthcare (evaluating a health problem that has occurred) to pro-active healthcare (acting to avoid a health problem to occur).

Where to construct the new data highway?

This new law doesn’t cover you sharing data with a third party, as in the described scenario. It is about files that are being kept and maintained by healthcare providers. Is it already obsolete the day it is adopted? The law enables you to share data electronically, for example stored in a hospital system, with an app and thus making the algorithm more accurate. Another gain in this law, in our opinion, is the ability for third parties to make use of BSN as a unique key to link medical records to each other. It simplifies getting my data instead of someone else’s data into my app. This will help developments moving forward, more than me giving individual care providers rights to share my data.

The data flow from a patient to a healthcare professional is not covered either. How will care providers accept data you generated yourself? We expect this to be a lot more data than they have in our medical file at present. Are they able to use it to give you a more personalized treatment? What do they need to know? We cannot expect the law to answer these questions. At the same time, in the area we expect most changes in data exchange the coming years, no extra measurements for data protection are provided. So for now you need to make your own decisions in whether you are comfortable in sharing your information with a third party or healthcare provider, or not.

The hot days of September are behind us, and autumn is on its way, shortly followed by winter: time to get some good advices from a symptom checker app on how to avoid of a cold and influenza, and enjoy the beauty of the upcoming seasons.