Recovering After Intensive Care with Digital Support: Lessons from the PICOS Study
For many patients, discharge from the intensive care unit marks the beginning of a long journey back to everyday life – often accompanied by physical and mental health challenges. Symptoms such as concentration problems, muscle weakness, and depressive moods, known collectively as Post-Intensive Care Syndrome (PICS), can have a lasting impact on quality of life. The PICOS study within the Digital Hub DISTANCE supports former intensive care patients through the PICOS App. Its aim is to gain a better understanding of PICS and to develop new therapeutic options. By the end of June, the last participant had been enrolled in the study, and data analysis will begin in the fall. Yet even now, one thing is clear: participants and researchers have gained valuable insights into the use and added value of digital solutions for post-intensive care follow-up.
Participants Document Their Health Using the App
Between July 2023 and the end of June 2025, more than 200 former patients from eleven regional hospitals and a physicians’ network were recruited for the PICOS study. Eligible participants had either spent at least three days in the intensive care unit or had been on mechanical ventilation for more than 24 hours.
Using the PICOS App, participants regularly document their health status by entering data such as blood pressure, pain levels, and sleep patterns. In addition, follow-up examinations are conducted at three, six, and twelve months after discharge.
The PICOS App as a Tool for Self-Care
So far, patient feedback has been largely positive. Many appreciate the opportunity to continue receiving support after leaving the hospital while contributing to medical research.
Some participants also use the PICOS app as a general tool for self-care: “The app has helped me establish a new routine, making me more attentive to my health,” one patient reported. Beyond its physical health benefits, the app also provides emotional support, as one user shared: “The app helped me process my experiences in the hospital and made it easier to talk about them.”
A Key Lesson from the PICOS Study: The Human Factor
The study has also been a learning process for the project team. “Patients’ willingness to participate was considerable, but maintaining motivation over time is essential,” says Andreas Bleilevens, lead project manager of the DISTANCE project at RWTH University Hospital Aachen. Implementing digital solutions is less an IT project than a process that needs to be integrated into both clinical and personal everyday life. “The human factor – with its routines, expectations, and reservations – must be a central consideration,” he adds. To meet these challenges, the team emphasizes the importance of flexible planning and an agile approach to adapt to the realities of clinical care.
What’s next?
Final follow-up examinations will be completed by the end of September, followed by data analysis. On October 1, 2025, the follow-up project DISTANCE:PRO will begin. This new phase will further develop the outcomes of DISTANCE, including making the PICOS App modular and adaptable for other medical conditions. In addition, DISTANCE:PRO will intensify collaboration with other Digital Hubs within the Medical Informatics Initiative through a joint use case.
About DISTANCE
The Digital Hub DISTANCE aims to make health data from regional care available for research. This process is demonstrated using the PICOS App, which also serves as a therapeutic support tool for former intensive care patients. The Digital Hub developed within the project functions as a central data storage platform for regional healthcare facilities, enabling mutual data exchange for research purposes.
Read more: In our interview, Petra Hetfeld and Dr. Caren Martin share insights into patient recruitment and the implementation of the PICOS study at University Hospital RWTH Aachen.