Patients with blood cancers such as Myeloproliferative Neoplasms (MPN) and Chronic Lymphocytic Leukaemia (CLL) often face long-term symptoms like fatigue, night sweats, and emotional distress. These symptoms, while impactful, are not always captured during routine clinical visits. CMyLife, an e-health program governed by the Dutch Association for Haematology, aimed to address this by designing and implementing a Patient-Reported Outcome Measures (PROM) App through co-creation between patients, healthcare professionals, and academic researchers.

The goal is to empower patients to better manage their own health and to provide clinicians with richer, real-world data to inform care decisions. Ultimately this real-world data will, with patients’ consent, also enable improvement of quality of care.

Despite advances in treatment, MPN and CLL patients experience key care gaps:

• Incomplete Symptom Reporting: Traditional clinical consultations can miss chronic, fluctuating symptoms, often significantly impacting quality of life.

• Limited Patient Involvement: Patients can feel unheard or inadequately monitored.

• Inefficient Monitoring: Reliance on in-person visits for chronic cases leads to unnecessary appointments or missed deterioration.

• Data Silos: Patient data is fragmented and lacks integration with electronic health records.

CMyLife partnered with Patients Know Best (PKB) to develop a secure, integrated PROM app, enabling patients to log symptoms, monitor quality of life, and communicate insights to their care team. Key features include:

• Symptom Tracking and Development over Time: Patients can log their experiences, aiding early detection of treatment side effects and improved quality of life.

• Validated PROMs: Tracks emotional, physical, and social health using standardised measures across all hospitals in the Netherlands.

• PKB Integration: The PROM app is designed to integrate effortlessly with the Patients Know Best (PKB) platform, ensuring a secure, efficient, and user-friendly experience for patients and their caregivers. By leveraging PKB’s integration capabilities and infrastructure, the app enables seamless data sharing and integration within the patient’s existing health records:

• • Securely gets permission from patients and their caregivers to look at their PKB health record and confirm who they are, all in one smooth process enabled by PKB’s integration capabilities.

• • The application uses the PKB platform as its secure host to send, store, and retrieve all information entered by the user. 

• • The health information patients enter into the PROM app seamlessly integrates with all their other PKB record data, including information from MedMij (the national system which allows for data sharing between Netherlands’ healthcare providers and patients via PGOs* including PKB), making it all accessible for extraction.

• Personalised and Remote Care: Reduces unnecessary visits by alerting clinicians to concerning trends remotely.

• Research Data: Aggregated, anonymised data supports research into patient-centred treatment protocols.

Although still in the early stages of rollout, the implementation has shown promising results:

• Improved Communication: Real-time data allows for timely, informed clinical responses between appointments.

• Empowered Patients: Patients report a stronger sense of control over their health and confidence in managing their conditions.

• Efficient Healthcare Delivery: Reduced unnecessary hospital visits and improved symptom detection.

• Enhanced Research Capabilities: PROM data supports real-world evidence generation and better personalisation of treatments.

• Efficient Consultation: Reducing the time required with the patient by having up-to-date clinical data e.g. symptoms.

cmyVitaLog, the CLL & MPN PROM App, is expected to become a central tool for long term or chronic disease management. It supports:

• Integration with national health data systems such as MedMij.
• Widespread adoption within haematology.
• Expansion to additional rare and chronic diseases.

By combining real-world patient input with secure digital infrastructure, the cmyVitaLog CMyLife PROM app represents a transformative step in personalised, value-based cancer care.

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* In the Netherlands, a PGO (Persoonlijke Gezondheidsomgeving) is a secure personal health environment, like an app or website, that allows you to collect and manage your medical data from various healthcare providers in one place.

* MedMij is the Dutch national framework that sets secure standards for how citizens can access and share their personal health data digitally.