For a self-determined everyday life with PBC.
Summary
PBC Companion
People living with primary biliary cholangitis (PBC) are dealing with a rare, chronic liver disease that often shapes everyday life quietly but permanently. The PBC Companion (German: PBC-Begleiter) supports them in managing symptoms and complaints day to day, in understanding their own condition and in active self-management. What makes it special: the app was developed together with patients living with PBC.
Users record their daily well-being, symptoms, lab values and doctor’s appointments in one place. Trend charts make changes visible over months, and the PBC-10 questionnaire regularly captures quality of life. Easy-to-understand knowledge content on topics such as nutrition, exercise and mindfulness and a PDF export for the next doctor’s visit round off the app. Users who wish to can share their data anonymously with research.
The PBC Companion was developed by QuickBird Medical on behalf of Kautz5 gUG, with scientific advice from Prof. Dr. Dr. Andreas Teufel and made possible by financial support from Ipsen Pharma GmbH. QuickBird Medical built everything from the iOS, iPadOS and Android app to the backend and infrastructure.
Challenge
The PBC Companion is aimed at people with a rare disease who often feel left alone and already know their situation very well.
The app therefore has to offer real everyday value without being overwhelming: quick to use, even on days with little energy, and free of unnecessary notifications. Medical content on symptoms and lab values has to be medically reviewed, easy to understand and reliable.
On top of that, the app was meant to support patients in everyday life and at the same time create a solid data foundation for research. This required a solution that processes health data in strictly anonymized form, makes consent transparent and changeable at any time, and is still suitable for scientific analysis.
Process
QuickBird Medical took on the development of the PBC Companion for iPhone, iPad and Android, including backend and infrastructure.
Patients were at the center from the very beginning. In group and individual testing sessions with PBC patients, onboarding, symptom tracking, query frequencies and trend views were reviewed together on the prototype. The feedback went directly into concept and design, for example into the free-text daily note on symptom progression or clearer guidance through the PBC-10 questionnaire.
The entire development process took place within our certified information security management system under ISO 27001. Research data is stored in anonymized form only, so it cannot be traced back to individuals. Consent to data sharing can be changed in the settings at any time. Accessibility was just as important: good readability, sufficient contrast and scalable font sizes, so that the app is comfortable to use for everyone affected.
Result
The PBC Companion is available on iOS, iPadOS and Android and gives people with PBC a tool that brings structure to their everyday life and puts their conversations with doctors on a solid footing. Because patients were closely involved, the result is a product that is built around their actual needs.
At the same time, the app creates an anonymized database that Prof. Dr. Dr. Andreas Teufel analyzes together with a patient advisory board. This makes it possible to scientifically analyze the burden of PBC, gaps in care and self-management, and to make the findings available to health policy in the long term.
The PBC Companion shows how patient focus, medical rigor and research can be combined in one app, with high standards for data protection, data security and accessibility.
“QuickBird Medical has developed the PBC Companion for us, an app created by people living with the rare liver condition PBC for others affected by PBC. The PBC community is absolutely delighted with the result, and so are we. The feedback from PBC patients has been overwhelming.
The team worked extremely closely with us and those affected on the app’s design, contributing many creative and useful ideas. The result is an app that is tailored precisely to their needs and genuinely helps them in everyday life with the disease.
It is great fun working with this team, and we would do the next project with them again in a heartbeat.”
ACHIM KAUTZ
CEO of Kautz5 gUG
Screenshots
Mobile
Future
The PBC Companion is continuously being developed further. Based on feedback from the community and the patient advisory board, QuickBird Medical keeps adding new features and content to the app. Through the patient advisory board, patients can also contribute their own research questions to future data analyses. The collaboration with Kautz5 gUG continues, so that the PBC Companion can reliably support people with PBC in their everyday lives in the future as well.
