PKB in the Netherlands

The Netherlands looks to London as the model for sharing health data with citizens

Internationally, the traditional model of healthcare relies on the caregiver (namely allied healthcare professionals) to manage and design treatment and care, with the patient being considered secondary. In the Netherlands however, Medmij – the Dutch model for sharing patient data, helps to break down the doctor-patient paradigm by putting its citizens in control of collecting and sharing their health data using their PGO (patient portal) of choice.

Patients Know Best (PKB) has been working in the Netherlands and Germany since 2017, alongside our reseller partner CarePoint B.V, to provide a PGO solution that adheres to the strict guidelines set out by Medmij and the Dutch Ministry of Health. As a result, in 2019, the PKB – CarePoint PGO was successfully certified as a Medmij compliant solution.

PKB’s European headquarters are based in Amsterdam, where our European data centre facilitates the exchange of health data for Medmij, CMyLife at Radbound UMC, Reumazorg Zuid West Nederland in the Netherlands, and also St Patrick’s Mental Health Services in the Republic of Ireland. The PKB European data centre facilitates access to information about care and treatments which positively supports and improves the quality of life for patients and services users managing disease and mental ill health.

A Dutch endorsement

Following the announcement that PKB has been awarded the personal health record procurement for London, the United Kingdom through Patients Know Best, demonstrates that a PHR solution works at scale in a way that has not been seen before. 

On 25th March, Medmij commented: “Thanks to this agreement in London, the potential user number of a large British PGO jumps from 12 to 20 million. ‘As I see our mission, this goes far beyond giving the patient control over their own medical records. It’s about changing healthcare from a system in which the patient undergoes treatments to a system in which the patient and his environment themselves take control of their own health.’

“We fully endorse these words by Richard Smith, chairman of the supervisory board of Patients Know Best (PKB). We are closely monitoring developments in Great Britain and continue to work hard towards our goal: that all Dutch people who wish to do so can collect and share their health data with their own self-selected PGO.”

PKB, with their partners at Carepoint B.V are already working closely as part of the €75 million VIPP Open Programme, to support the adoption of PGO’s by primary care in the Netherlands and expect to have the first of several ‘Controlled Go-Live’ projects live in early April. As part of this program, this will also extend access for all citizens using PKB’s PGO to be able to see their GP data via the Medmij interface. 

Agnostic, yet still patient-centred in every way

The PKB platform in partnership with its UK customer base, has developed a model that proves that it can work with, and across multiple systems, institutions and disease areas, while still maintaining the integrity of patient data. 

Easing the institutional roadblocks to the flow of patient data through a patient-held, personal health record, creates the emergence of an ecosystem that is more responsive to the needs of the patient, wherever they are, and whenever they need care – while also continuing to nurture an environment where a patient can take control of their own health.  

Jan van der Beek, of CarePoint, said: “We are proud of this achievement by our British colleagues. This is hopefully an incentive for everyone who plays a role in the introduction of PGOs in our country. As PKB’s partner for the Netherlands and Germany, we often discuss the differences and similarities between the British and Dutch approach. As a result, we learn a lot from each other but interestingly, there are more similarities than differences.”

‘London gives patients a grip on the flow of medical information’

In a Dutch article that followed entitled, ‘London gives patients a grip on the flow of medical information’, Healthcare Editor, Philip van de Poel, commented: “London is taking a big step towards integrating the medical information flow. With the commissioning of a new digital framework and a deal with the market leader in personal health records Patients Know Best (PKB), in principle 20 million residents can access and manage information from the National Health Service (NHS)” (published on Skipr, 24th March).

The London Procurement award builds on the Care Information Exchange (CIE) – the UK’s largest personal health record system provided by PKB in North West London (NWL). This PHR enables patients in NWL to access their correspondence, appointments, test results, care plans, as well as exchange messages with their healthcare teams, record measurements, symptoms, medications, allergies, access tailored resources and keep a journal of their health. Furthermore, a new integration with Servelec means that health and social care data is also integrated across this London region.

The award means the four other London regions can join the PKB network to exchange medical information with patients and professionals to transform the way patients interact with their health and care services. It also expands on the use of PKB by Integrated Care Systems across the UK including in the North, East Midlands and in Wales. 
With Europe moving ahead and the US increasingly looking to enforce a federal rule which will ‘require US healthcare providers to give patients access to all the health information in their electronic medical records without charge’, London and the United Kingdom, through Patients Know Best, demonstrates to the world how placing patients at the centre of their care, with safe and secure access to their health information, is the only sustainable and scalable model for sharing patient data.


More about the Medmij and PKB in the Netherlands

At PKB, we work in collaboration with our reseller partner – CarePoint B.V, to provide a PGO solution (patient portal) that adheres to the strict guidelines set out by Medmij and the Dutch Ministry of Health. The PKB – CarePoint PGO was successfully certified as a Medmij compliant solution in late 2019. You can read more about this here.

The Medmij Model 

Within the Netherlands, there are over 30 approved PGO’s (or personal health record solutions) available for Dutch citizens to register with in order to retrieve their medical data from multiple institutions. 

In comparison to the UK, where patient access is directed by the caregiver (GP, Hospital etc) and limited for the most part by the caregiver’s coverage, in the Netherlands, it is directed by the patient. The patient has the choice of which PGO to use, but often recommendations will be made by organisations on a favoured supplier based on functionality that can support the caregiver in communicating directly with their patients. 

As the Medmij approach is highly standardised and secure, with all PGO suppliers retrieving data from the same database, the ability for patient choice to factor in when choosing their PGO is high. From a democratic standpoint, this is very commendable, from a continuity standpoint it will be a very difficult market to navigate for patients and manage by caregivers. 

As our CEO pointed out in an interview with one of the leading Digital Health news outlets in the Netherlands, Skipr, the likelihood is that a number of PGO suppliers will be bankrupt before they affect any purposeful change to the system. The process of developing interfaces, onboarding staff and maintaining a platform is expensive, and only those with enough cash to meet requirements will remain. 

Needless to say, the willingness of the Dutch government to provide subsidiaries for the successful implementation of PGO solutions, shows its willingness to put the patient back in the driving seat. 

One PGO; Multiple Providers 

Further commendable within this program is how patients are empowered to retrieve data from many organisations within the Netherlands. This model is infinitely scalable provided that suppliers are able to meet the rigorous acceptance criteria and give the patients the purposeful view into information otherwise siloed by multiple EPRs. 

User experience will play a huge role in determining those companies who survive and collapse during these initial stages of the Medmij program as simply presenting data to a patient without supporting information or a means of communicating concerns with clinical staff, will make PGO’s less valuable to healthcare. 

Security and User Experience 

As the Dutch government has taken a ‘free-market’ approach to providing PGO’s to its citizens, there is by necessity a need to ensure that information is transmitted with the highest security standards. The process of retrieving information requires the citizen to use their social security number or ‘DigiID’ as part of the authentication process. Whilst the security of the system is unquestionable, the user experience does not lend itself to proactive, patient-led care. 

The success of many human-focused applications relies on content being ‘pushed’ to the end-user. Facebook, Snapchat and even banking apps are able to send push notifications to their users to ensure they remain engaged with their product or services and this should be the same with healthcare. By asking the user to retrieve their data each time they log into their PGO, degrades the usability of the system. Patients need to be sent their test results, clinical correspondence and useful resources to support them in their care. This is how you create an engaged community who find value in your product – something PKB has learned from many years working with customers in the UK. 

Certainly, as Medmij is developed and caregivers become more involved with patient-facing applications, the need for push notifications will become prevalent. This however by no means erodes the fantastic work already done by the Dutch government to mandate patient access to medical data. 

Experience in the UK 

PKB’s untethered approach in the UK has helped to drastically break down the technical, legal and political challenges of sharing data across the full spectrum of services within the NHS by putting data in the patient’s control. The untethered nature of PKB was one of the reasons why the CMyLife project at Radboud UMC chose PKB to be the backbone of their ecosystem and their PGO environment. This choice has further been strengthened by the work of CarePoint and PKB to hook into the Medmij environment to retrieve more patient data. Navigating complex care across many sites has the potential to be burdensome to many patients, but providing a PGO environment that can include carers and professionals in a single record, allows for better coordination and ultimately, better outcomes. 

Medmij is helping to alleviate the pressures of the system by empowering citizens with access to all of the information they need to support themselves. From our experience in the UK, it has been made clear that giving the patient access to all their data, only has positive consequences. 

See Linda’s story from her experience of using PKB as part of the Care Information Exchange in North West London.

We are keen to extend PKB’s success and mission of providing patients with purposeful access to their health data in the Netherlands, by working with Medmij and our partner CarePoint, to share our experiences in the UK market of taking this untethered approach. 

Looking to the Future 

Healthcare is undoubtedly moving to a more ‘digital’ model for delivery because of capacity demands, user demands and limitations of the current operating model. PGO’s and personal health records in the UK unlock the potential for system-wide change and when supported by government standards such as Medmij, the likelihood of scale and adoption is improved. 

Indeed it is clear that this process of democratisation, assures an environment where citizens who are empowered by access to data, expertise and technology, can take control of their health and wellbeing. Dutch citizens should be proud of what their government has achieved which will only improve as time moves forward as the key players emerge in the PGO market. PKB – CarePoint definitely looks to become one of them.

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