This platform provides patients with knowledge and tools that allow them to take control of their illness and enable remote care
Patients Know Best (PKB), the world’s largest personal health record platform, is working nationally and locally across the Netherlands to empower patients with their health data and efficiently engage with their health providers.
Our partner Carepoint is certified by Medmij, enabling us to offer PKB as a certified PGO (Persoonlijke Gezondheidsomgeving) solution for all patients in the Netherlands.
We're already live with diverse clinical teams - from condition specific, such as supporting blood cancer patients with decision making, to helping refugees take ownership of their health information.
Learn more about our programmes below and contact us to enquire about how your organisation can work with PKB in this region or replicate these workflows.
Certified PGO
PGO is the Dutch abbreviation for personal health environments, allowing citizens to retrieve a copy of their medical data on an app or website of their choosing.
To give people control over their own medical data, the Dutch Patient’s Federation created Medmij, an organisation charged with overseeing a framework of strict rules for the secure exchange of medical data.
Through our partnership with Carepoint, certified by Medmij, PKB provides a certified PGO solution in the Netherlands which is integrated with the national DigiID login. DigiD allows Dutch citizens to login to services related to healthcare, pension, government and education with a verified account that identifies them. Patients can safely retrieve their data using the DIgID login app, SMS verification or physical ID.
Almost every GP, and many secondary care providers, participate in the Medmij scheme. With just a few short clicks patients can request to have their data - documents, allergies, diagnosis, medications and more - added to their PKB record. To find out how, follow this link: https://wiki.patientsknowbest.com/space/MAN/3617620130/How+do+I+get+my+data+as+a+patient+in+the+Netherlands.
More information on PGOs can be found on the PGO NL website: https://www.pgo.nl/wat-is-een-pgo/
Innovating with CMyLife
Since 2016 PKB has partnered with Radboud University Medical Center on the CMyLife app to support patients with Chronic Myeloid Leukaemia (CML), helping to reduce travel and in-person appointments, improve symptom management, and enhance treatment adherence. The programme started in Radboud UMC but is now utilised by clinicians across the nation.
Using PKB’s platform, the CMyLife app tracks symptoms like fatigue and diarrhoea in real time, enabling proactive care and reducing disruptions to patients’ lives. Integrating patient inputted data alongside data from providers (EPIC), healthcare professionals benefit from dashboards that display key metrics, including BCR-ABL test results, allowing them to prioritise patients who need immediate attention.
The partnership has expanded to include Chronic Lymphocytic Leukaemia (CLL) patients, with a digital decision aid helping patients understand their treatment options and side effects. In 2025, the programme will include Myeloproliferative Neoplasm (MPN) patients, integrating symptom tracking PROMS and clinician dashboards to further enhance care.
CMyLife’s innovative approach not only improves outcomes for blood cancer patients but also generates valuable data for research, offering insights into treatment efficacy, patient experiences, and priorities.
The data offers insight which are used to continuously improve quality of care. This model has the potential to scale across specialties and regions. For more information, visit CMyLife .
Empowering people on the move with Ahti
With HealthEmove, we empower and educate people on the move to own, access, and share their health information with new healthcare providers. By streamlining medical record sharing, we aim to enhance continuity of care for mobile populations while alleviating the workload for healthcare providers.
Access to one’s own healthcare data is especially important for people on the move, but it holds great value for all individuals navigating today’s increasingly mobile world.
In November 2023, PKB partnered with the Amsterdam Health and Technology Institute (Ahti) to support the launch of HealthEmove, a programme designed to help “people on the move”, securely store and manage their medical records when relocating between countries and within cities.
Mobile individuals often lose access to vital health information due to changing locations and thus changing healthcare providers. This creates challenges for both patients and healthcare providers. HealthEmove ensures their medical data is centralised, accessible, and portable, reducing care disruptions and avoiding duplicated tests or treatment.
Once registered, users can log in to add data—such as measurements, medical files, and medication history—or complete forms. The platform also provides access to an online library with information about the Dutch healthcare system, including how it works, where to find services, and patients' healthcare rights.
As a result of the successful collaboration between Ahti and PKB, multiple organizations such as the LOA Foundation and ASKV are collaborating to improve the care for mobile populations.