Every patient deserves the healthcare best suited to his or her personal situation. A successful treatment should suit to the personal situation of a patient, which can differ from person to person. The most suitable care is the result of the most suitable treatment and requires patient and healthcare provider to have insight into the outcomes that are relevant for the patient. Patient and doctor should decide together what treatment is best for that particular patient and where the quality of that treatment is guaranteed most. Therefore the Dutch government collaborates with all parties in the healthcare sector in order to make outcome information available and invests €70 million in Outcome-based Healthcare for the years 2018 to 2022.
One of the goals is better access to relevant and up-to-date outcomes information for over 50% of disease burden. Information that is automatically derived from the data that is entered at the point of care in EMR’s. We don’t want doctors and nurses to spend valuable time entering data twice. Time that is better spend delivering care than on administrative tasks.
Automatic generation of outcome data is only possible if the outcome measures are interoperable with the data entered while delivering care throughout Healthcare and exchanged between care providers. Electronic exchange of healthcare information will usecase by usecase become mandatory in Dutch Healthcare. That exchange will be based upon work on semantic interoperability to have unity in language across Dutch healthcare. Standardizing clinical terms such as blood pressure and allergy in “Health and Care Information models (HCIM)”.
We strive to be able to derived outcome measures from that standardized data. Last week we discussed with ICHOM the possibility to harmonize the different outcome sets. And we decided to do a three month long “deep dive” into the current sets and the differences in descriptions of (almost) the same concepts. Not to harmonize per se (but quick wins may be found), but to at least identify harmonization issues to be debated.
I see two obvious goals:
Model (and make available) all current ICHOM-measures so to be able to identify different definitions of roughly the same concepts and to identify building blocks used in multiple measures
Propose a FHIR-based model for exchanging outcome measures
This will be a joint effort of a number of people. Are you interested to cooperate or review? Please let me know!
Dutch Digital Health Night, 9 April 2019, Dutch Embassy, Berlin
Thank you chair for your introduction and for the opportunity to address this immensely creative and innovative public in digital health. Also, thank you deputy head of mission for hosting this event and bringing together all these creative minds here.
Dear ladies and gentlemen,
Let me start with something funny yet quite striking, in November last year a Dutch emergency doctor tweeted that he had discovered the digital highway in healthcare! In fact he was referring to the A1 highway, on which a taxi, carrying a DVD with medical images, was travelling to another hospital twenty miles away.
Today, under the shadow of the DMEA event, we are addressing the many common challenges under the denominator of digital health. Here, together, we are laying the foundation for a sustainable, modern and future proof healthcare system.
For us in The Netherlands, this is an ongoing journey of experimenting, learning and adapting. I want to share with you our approach.
As a government, we have the responsibility to serve our citizen’s interests, and we do this by celebrating the many heroes in Digital Health. The passionate professionals who work tirelessly every single day. The relentless patient advocates who share their compelling stories to keep us all on the right track. The rebel entrepreneurs who defy the system and disrupt the status quo. The change-makers who see possibilities and have the courage to act on them. Change-makers that are in this room today. We should celebrate them, learn from them, question them and most of all embrace them.
The one thing we cannot do is ignore them. Because they are the change. They invent. They imagine. They explore. They create. They move.
This evening I want to celebrate one of my heroes: the late Niels Schuddeboom.
For over a year, Niels was a valuable member of the Ministry’s Board of Directors, our first Chief Experience Officer. As such, he got access to all board meetings, often with a virtual presence.
When dealing with the complex changes required for digital health, Niels chose empathy over distance, humour over judgement and dialogue over opinions.
He learned to dance with the system, and be the change he wanted to see. Sadly, he lost the fight from cancer. In his last year, he mobilized like-minded people, heroes in their own right. They are the ones who will continue the great work Niels had started. They too are the change. We now have over 50 Chief Experience Officers for which Niels paved the way.
Ladies and gentlemen, innovation in healthcare is what I call a wicked problem. It is complex, as it involves many different stakeholders with diverging interests. The conservative powers are often very strong, working to keep the status quo.
Governments have a responsibility towards people like Niels to accelerate health innovation, so the benefits are available to them at the right conditions. We need to ensure
that digital health adds value to patients and keeps citizens healthy
that it enables healthcare professionals to spend their valuable time and knowledge on meaningful results, providing the best possible care at the right place, instead of on useless red tape and procedures and
that all digital communication is trustworthy and safe.
Government alone can never bring the change we need. For this we need the whole ecosystem. And our role is to bring everyone together. To show leadership and go from making legislation to kick-starting the broad social movement to empower citizens to become the master of their own health. To bring cold technology to enable warm care. To take healthcare from the waiting room to the living room. With a strong focus on high impact, using proven technology and getting measurable and meaningful results.
Data is the blood and oxygen of modern healthcare. We need to be able to trust that the right information, in the right form, is in the right place at the right moment. But as obvious as this sounds, it doesn’t come naturally.
In 2014, after travelling through space for over 10 years, the European Rosetta Philae space probe successfully landed on the surface of comet 67P, about 490 million kilometers from Earth, travelling with a speed of 135 thousand kilometers per hour. This extraordinary feat required an international collaboration spearheaded by the European Space Agency, groundbreaking communication with the Rosetta spacecraft and extreme precision calculations. It is truly a tribute to what humankind is capable of achieving with technology.
And yet, 5 years later, with technology at least 15 years more advanced, we are not able to guarantee that digital medical image data is available in a hospital 20 miles away.
Ladies and gentlemen, modern healthcare is a flourishing ecosystem of interconnected people. An ecosystem needs a good climate that enables the stakeholders to do what they do best. It is the responsibility of government to ensure that the incentives are aligned and that there is an open and level playing-field for everyone -from the current players to the disruptors. There isn’t a tried and tested model for what this will look like, it is a learning process for everyone.
Our approach focusses on unleashing the positive energy that is already there in the field, removing obstacles and creating the conditions for mutual learning and cooperation. This approach is proven to be successful in creating breakthroughs.
We stimulate this learning by accelerating breakthroughs with so-called Health Deals. We bring people together and will not let them go home until they have committed themselves to creating a breakthrough. So far, 5 Health Deals have been signed, ranging from personal prevention with eHealth and gaming, to dealing with chronic pain and using e-health for vulnerable youths.
We reduce the risk for digital health investors by creating a seed capital fund, so they accept the possibility of failures more easily. As you all know, failure is the best way to learn.
With the Health Innovation School, we invest in the innovation skills of the healthcare leaders of tomorrow. Here they learn how to become Change-Makers. The first two rounds of 50 future leaders have been trained, now the Health Innovation School is growing regionally, spreading the knowledge and network deeper into the healthcare organizations.
The second thing any ecosystem needs is fertile ground. That is the foundation on which modern healthcare is built. It is the standards and requirements and legal frameworks that ensure that all communication is safe, secure and trustworthy.
That we know who we are communicating with.
That our communication has not been altered along the way.
That the data is not misinterpreted.
And that we can use the data in our own systems.
Therefore, we created a National Health Information Council. A public-private partnership, including patients, doctors, nurses, other health professionals, insurers, hospitals, care institutions, general practitioners and governments. Or as I'd like to call it: we got the whole system in a room. With the Ministry in the role of a system therapist. And also as law maker providing both carrots and sticks to speed up and force electronic exchange of data in health care.
Together, we have set ambitious but achievable outcome goals: improving medication safety, promoting patients access to their medical data, enabling safe data exchange and improving the quality of data. One time registration at the source and multiple re-use. To reach these goals we need mutual agreed upon standards for information exchange.
In my experience, a lack of vision on the future of healthcare is not the problem. The technology is not the problem either. It is the implementation.
The main challenge in digital health we face today is how do we scale up working and proven solutions to benefit all our citizens and professionals?
I believe the killer breakthrough to scale up innovation is to free personal health data from the silos and give people the tools to leverage that data to improve their health. In The Netherlands we have MedicalMe, or MedMij as we call it.
MedMij is a patient-led coalition of insurers, healthcare providers, health IT industry and government, creating the national trust framework for an ecosystem of personal health systems. They develop and test a set of standards to exchange personal health data with citizens: structuring clinical data based on SNOMED, exchanging data using IHE-profiles and communicating with citizens using FHIR.
MedMij is privacy-by-design, as it puts you in charge of your own data.
It is longitudinal, as it is the national standard for exchanging personal health data with patients. Standards that will be enforced by law as the same standards must be used in exchange of data between health care providers.
MedMij is no longer just an idea. The Trust Framework has been published, the first use-case based FHIR-profiles are ready, over 50 personal health data service providers are in the certification process to be part of the trust framework and over 80 healthcare organizations are working on implementing MedMij for their patients.
This is just the start. It is real, and it is scalable, as it allows for different solutions for different people, all on a common foundation of trusted communication. It is growing fast. From October on every Dutch citizen can use a MedMij-certified personal health environment for free. Suplliers will be reimbursed by the government.
Ladies and gentlemen,
My message to you today is to continue the great work that you are doing. And to work and learn together, like we do tonight, also across borders. National borders are man-made barriers. This city has a rich history unleashing energy through breaking down barriers and tearing down walls. There is a parallel with freeing personal health data from silos, as you understand. To us governments the task to take down implementation barriers that prevent scaling up the innovative solutions you will be presenting this evening. I also call upon my colleagues to come together and agree on common standards to be used in our healthcare system to allow the effortless flow of data within and across our national borders.
The future is now and you are part of it. A special good luck to all the pitchers. Regardless of who will take home the prize, I consider all of you winners.
Last week I was in India for a few days. It may sound strange: working to improve information systems in health care in the Netherlands and then travelling so far. Yet it is not that crazy. We were there because we became a member of the "Global Digital Health Partnership". A group of governments from all over the world, started by Australia, who together take actions to improve health care. We were mainly focused on two topics: information security and standards for (interoperability of) data exchange in healthcare.
Both topics have one thing in common: they do not stop at national borders and cooperating does help. Information security is a good example of this. Cyberattacks at ICT systems in health care institutions are everywhere. Think of the computer virus that hit the NHS in England last year. Because England wakes up earlier than the United States, the British were able to find out in time what was happening and warn the Americans. Sharing this kind of information really makes sense. That is what we are going to do with a number of countries. Countries in all kinds of time zones, so that we can really help each other.
When it comes to standards for exchange of information, the same is actually the case. Many vendors in healthcare sell their systems worldwide. The data in these systems is often not easily available to exchange. This must change, because information exchange is needed for good quality healthcare. It helps if a group of countries together demands the same set of standards from industry. This accelerates these standards being built in to their systems. So demanding interoperability is what we're going to do. By doing so, Dutch healthcare also benefits.
That is why international collaboration is not that stupid. It has clear benefits for healthcare in the Netherlands and each of the countries of the GDHP. Because that's what it’s in the end all about: improving health IT to enable the right care in the right place at the right moment.
Thank you for the opportunity to be present today at the Global Digital Health Partnership meeting.
Health care delivery in the Netherlands mainly is private, so decision making demands all parties to support the direction taken. For that we in 2014 started a Health Care Council that decides on standards and goals, with the whole system in the room including patients, doctors, nurses, payers and patients and bringing the consensus needed.
We have set a number of steps and like to share those with you and hopefully come to international harmonization of our efforts:
Patients in the Netherlands are entitled by law to get their own data digitally, as much as possible in a structured way, in a Personal Health Environment from all health care providers by July next year. Governed by a patient led coalition we therefore are building a trust framework called MedMij (see this animation or read about the Information Standards underlying it).
MedMij is mostly based on FHIR profiles enforcing also semantic interoperability by specifying the elements to be exchanged. For semantic interoperability we defined clinical building blocks (see this page for more information) consisting of relevant mostly international terms (from languages such as Snomed or Loinc) describing clinically relevant concepts (such as blood pressure).
Over 400 million euros go to health care sectors to be able to do this.
There is a new law in the making to step by step force electronic exchange of data between health care providers with enforced standards both leading to technical and semantical interoperability. We will force the use of certified systems adhering to the standards. We will do so step by step, usecase by usecase. With the content of the exchange defined by doctors, nurses and other care providers themselves
As the Netherlands shifts to value based healthcare with outcome measures for more than 50% of disease burden, data needed for outcomes will be part of the standards.
Read the letter to Parliament on electronic data exchange.
Industry is accepting being obliged to share data and not monopolize patients data. Read this letter to Parliament for more information on our data strategy.