We should work together on data. Let’s start at HIMSS19 in February

Closing the gap between reality and possibility

Nowadays, we have the possibility to choose who gets to see and handle our personal data. That progression gives healthcare providers the right to access this data directly. On the other hand, it also allows us to be a so-called data-donor, not only improving our own health, but that of entire populations. During my work, I met several former patients who have made it their life’s goal to launch initiatives that close the gap between reality and possibility, like the Data for Good Foundation. Especially in the area of genetics, this could lead to major improvements on disease prevention and personalised treatment for patients.

Last year, I was asked to facilitate a series of workshops during the HIMSS Europe & Health 2.0 Conference in Sitges, Barcelona. At that very moment, I was confronted with the (in my opinion unnecessary) gap between the current ways of the healthcare ecosystem and the technological possibilities that lay ready to be implemented. The time for action has come, and I am confident that making data directly available to the patient/citizen can lead to better outcomes, given the premise that insight is provided in a way that leads to understanding. Furthermore, GDPR is a welcome provision for every citizen, as nowadays hardly anyone leads an offline life anymore.

So much data…

Having returned to my desk in the Netherlands, I quickly realised the extent of the challenge we are facing. On an average working day, the flow of messages, to-do lists, notes, emails, phone calls and oral assignments can hardly be overseen! Where do we start processing all that data, in addition to our existing workflow?

In a first effort to find a solution, Fenna Heyning and myself tried to put a main focus on the role of the healthcare professional, as we noticed they were underrepresented at the HIMSS Europe & Health 2.0 Conference: a conference where many important decisions were made. Soon after, Fenna and I joined forces again, writing a blog: “HIMSS Europe & Health 2.0 Conference 2018 unleashing data: two doctors raise the important question…”. We were wondering how to give patients control over their own data on a digital platform, while at the same time ensuring that doctors are able to fulfil their responsibility in initiating appropriate actions.

How to work with so much data?

During the following months, Fenna and I further exchanged our knowledge concerning this topic. I’d like to present to you a short list of our observations and ideas.

The first can be described as a sociocultural paradox: on the one hand, we are dealing with a culture built on working evidence-based and ‘do no harm’. This culture has brought the healthcare ecosystem (and its patients) many advantages, ever so lightly steering us towards making conservative decisions, subsequently restricting an openness to innovation. In some cases, it has led to rejection of all that is different or new. The development of healthcare therefore is at risk of slowing down, while at the same time changes within our society keep on accelerating. A new phase has long started, and leadership of healthcare professionals is required, as healthcare is becoming more and more dependent on information and technology.

All change is exciting, and can sometimes even seem daunting. The promising factor here is that every doctor can be a data-driven doctor. Partaking in growth does not even require special skills or courses. It all comes down to the same Hippocratic Oath we all started our careers with: ‘I will share my medical knowledge for the benefit of the patient and the advancement of healthcare’. The open exchange of knowledge and the process of collaboration are the two most important elements for the leaders of the future, the so-called data-driven doctors. Worldwide, the importance of FAIR data (Findable, Accessible, Interoperable and Reusable) is already being accepted and embraced, particularly among scientists. All we have to do is open the door.

Data: the biggest professional secret

There is one final bridge to cross. The amount of digital technologies available today is huge, but only few are accessible to healthcare providers within the hospital. One of the biggest reasons for the average clinician not to get concerned with technology, is the diversity in technologies and the lack of attention for its sustainable use. Meanwhile, a fragmented view on imported technology emerges, in which it is unclear whether the proposed technology is an upgrade for the healthcare process involved. To make things worse, in many cases technology is implemented inconsistently, increasing the administrational workload. Even though forming a complete and definitive picture of the patient is totally possible with current technologies, that wealth of available health data in the Netherlands seems to be the biggest professional secret of our time.

In conclusion, my expectations regarding the European developments in this area are raised highly and I believe data pooling should become the standard in the near future. My goal for the HIMSS & Health 2.0 European Conference in Helsinki is to organise a meeting with various stakeholders and early adapters. The goal is not only to improve the visible results for patients, but also the experienced work satisfaction by professionals. I’d like to take this opportunity to call on my colleagues to enhance their knowledge and fight to get access to technologies and a well thought-out use of data. Also, I like to call policy makers and other stakeholders to own this development and to actively contribute. The medicine of the future is digital, let’s take the first step together at HIMSS19!