Shared decision making: “It takes more than data”

Enhancing medical care and implementing shared decision making through digital technologies is all about data: this has been and still is a mantra for many digital entrepreneurs in the healthcare space. But is having access to data really sufficient for digital tools to make a difference?

Petra Wilson of the Personal Connected Health Alliance (PCHA) doesn’t think so: “No doubt that data exists and that there is a willingness on the part of patients, doctors, and nurses to share and to use it. But for shared decision making, it takes more than just data being available.”


What exactly it takes was illustrated during the session “Patients 2.0: Shared Decision-Making in Diabetes Care” on day 1 of the HIMSS Europe Conference in Helsinki. Siddharth Sharma, a data scientist and type 1 diabetic who has recently taken part in “Beyond Type 1 Ride Across America”, a 4000 miles bicycle tour from New York to San Francisco, recounted the nearly ten months it took for him to get type 1 diabetes diagnosed in the UK. This was despite the relevant data – in his case an ever increasing HbA1c value – being available at any time.

Shared decision making, according to Sharma, requires going beyond data. It needs a willingness to get to know the patient, to ask questions, and to embrace the differences between individuals:

“One size does not fit all. Every person is unique, and every relationship with a diabetes patient is unique. Empowering patients means helping them find the individual balance. My balance, being a data nerd, is very different from someone who hates data. Everybody’s lifestyle, and everybody’s technology use are different.”


How an individual relationship between diabetes patient and caregiver in an age of (enormous amounts of) digital blood sugar data can look like was illustrated by Lorenzo Sandini, endocrinologist at Lappeenranta Central Hospital in Southern Finland. Lorenzo is treating numerous type 1 diabetes patients who didn’t want to wait for the big med tech companies.

Instead, these patients engaged in building do-it-yourself (DIY) semi-automated insulin delivery systems. These tools, made from CGM or FGM sensors and insulin pumps, are linked with AI powered algorithms that calculate the individual insulin dose. Data is accumulated and analysed on a cloud platform called Nightscout, through which it can be made accessible to doctors, family members, or fellow patients.

Using semi-automated insulin delivery, whether with DIY systems or with medicinal products that are now, slowly, becoming available, can have enormous influence on quality of care. The time in the therapeutic range (of the blood sugar level) increases dramatically, average insulin dose typically falls, and hypoglycaemic episodes go down quite substantially. But all this is not only due to technology, but similarly because a completely new type of interaction between patients and caregivers is being established.

Sandini said that, for these patients, he was available outside of regular office hours, too, in order to be able to provide quick answers if necessary. This communication doesn’t only take place by phone, but even more so by messengers of all kind. It works because the information made available through the Nightscout platform is very robust and encompassing, and at the same time allows to run analytics that provide the doctor with exactly the type of information necessary:

“We need the analytic tools that have been developed by the patient community. If the patient came to me with one year of data and just numbers, is would be completely useless.”


Impressive as it sounds, participants of the Patients 2.0 session agreed that DIY semi-automated insulin delivery systems should not be the end of the patient empowerment story in type 1 diabetes care. Petra Wilson, a diabetic patient herself, was somewhat cautious:

“DIY is really important as a starting point. But if we really want to implement shared decision making, we need to get to a point where tools like these are actively supported by all healthcare systems.”

Empowering patients and implementing shared decision making in the case of type 1 diabetes, Wilson said, was at least as much about team-work as it was about technology: “Doctors and nurses, but also parents, employers, or friends, need to be part of the shared action around caring for a patient with type 1 diabetes.”

Getting there requires more than just a DIY pancreas. It requires a working ecosystem that doesn’t only collect data, but brings all relevant individuals together.

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