How open platforms help empower patients

“Gimme my damn data!” This powerful call to action from Dave deBronkart, widely known as e-Patient Dave and a prominent patient advocate, captures the growing demand for patient engagement in their care.  

There are numerous examples of why patient engagement leads to better patient outcomes. In Dave’s case, after being diagnosed with terminal kidney cancer in 2007 with expected survival of 24 weeks, he joined an online patient community, learned about high-dose IL-2 therapy, and collaborated with his medical team to undergo this targeted treatment, which ultimately helped him survive dire cancer diagnosis. This highlights how informed patients can play a crucial role in exploring life-saving treatments and improving their healthcare outcomes. 

But for patients to be able to participate in their care, access to data and information is crucial. And in healthcare, there is lots of data: in 2025, more than one-third of 180 zettabytes of data will come from healthcare. Traditional healthcare systems often trap this valuable information in proprietary formats and isolated silos, making it difficult for patients (and healthcare professionals) to access their complete medical history or share information across providers.  

Removing barriers

As we enter an era where patients are increasingly active participants in their care rather than passive recipients, open platforms provide the technological foundation that makes meaningful engagement possible. While patient-facing applications such as portals are often the most visible part of digital healthcare, their true value depends on the underlying data foundation. Open platforms like HIP are not primarily applications themselves, but long-term infrastructures that enable future use cases. The patient portal therefore represents an entry point – not the end goal – of a broader digital health strategy.

How do open platforms such as HIP help?

First, open platforms break down the walls between disparate systems, allowing patients and providers to access comprehensive health information regardless of where care was received and which application was used. A patient’s complete story – from primary care visits to specialist consultations to emergency room encounters – becomes accessible in one place.  

Second, open platforms store medical data in structured manner, meaning that everyone involved in patient’s care will have access to the same information, making it easier to analyse, share, and interpret the data.  

Third, open platforms do not lose data with updates or system changes but store it for the life of a patient, enabling the creation of truly longitudinal health records that follow patients throughout their lives. No longer does changing doctors or moving to a new city mean starting from scratch. Patient’s health story remains intact and accessible, providing crucial context for every healthcare decision. 

Finally, open platforms enable the creation of a comprehensive health record that extends beyond traditional healthcare setting by integrating information from diverse sources such as fitness trackers, home medical devices, nutrition apps, and mental health platforms. This provides a two-way communication between patients and healthcare providers, enabling patients to actively participate in their health records by logging daily symptoms, uploading data from wearable devices, and sharing relevant lifestyle information. 

Transforming patient engagement in Saarland, Germany’s federal state, based on an open platform strategy

vitagroup HIP collaboration with PLANFOX to develop patient portal for hospitals in Saarland (Saarländische Krankenhausgesellschaft e.V.) demonstrates how open platforms can support greater patient engagement. The project leverages our Health Intelligence Platform (HIP) as a shared data foundation, laying the groundwork for data-driven use cases in the future. The portal simplifies communication channels and improves access to patient’s health information, for example from the comfort of a patient’s own home, supporting active patient engagement in their care journey, from pre-admission preparation to ongoing treatment plans.

In its current phase, the patient portal primarily serves as a practical and low-threshold entry point to introduce open platform HIP as the shared data backbone across hospitals in Saarland. While the initial functionality focuses on communication and basic information exchange, the strategic value lies in establishing HIP as the foundation for future, data-driven patient services.

“Making appointments online, submitting important data and documents prior to admission, conducting digital anamnesis, exchanging messages with clinic staff, and tracking treatment status – this is what the future portal offers patients in Saarland,” explains Joachim Neugebauer, Vice President Clinical Care Solutions at vitagroup.  

The long–term goal of the project is for the portal implementation to be designed with both flexibility and standardisation in mind. In the long run, the goal is for each participating hospital to have its own HIP client, allowing for individual configurations while maintaining interoperability through a shared openEHR database structure.

This approach maintains consistent clinical data storage across all systems, creating the conditions for native interoperability at the database level as the ecosystem evolves. Over time, this architecture will support seamless data exchange between participating clients, helping ensure that care teams can access the most relevant information when needed.

We combine openEHR for data storage with FHIR as the primary communication standard, and, by doing so, we are providing the foundation for a robust and future-proof infrastructure. This standardised approach enables patients to easily share their treatment data and access their information when needed, supporting greater patient involvement as additional digital services are introduced.

So, as healthcare continues to digitalise, there is a growing recognition that open platforms provide the foundation for future care models in which patients and providers can make more informed decisions based on comprehensive data.