Beyond Data and Algorithms: The Role of Health Communication in Personalised Disease Prediction
Digital technologies are increasingly shaping everyday healthcare. From patient apps and wearable devices to advanced algorithms that support clinical decision-making, innovative tools are promising new possibilities for more personalised care. In the EU-funded project PerPrev-CID, such technologies are being developed to improve the prediction and management of two prototypic chronic inflammatory disorders, rheumatoid arthritis and inflammatory bowel disease. Yet, the success of these tools does not depend on the technology alone. Even the most advanced and accurate prediction tool will have little value if people are not aware of it, do not understand how it works, do not trust it, or do not feel comfortable using it.
Why Communication Matters in Chronic Disease Care
Effective communication is crucial for optimal patient care, including for people living with or at risk of chronic inflammatory disorders (CIDs). These conditions affect millions of people worldwide and can have a major impact on quality of life. Even though treatments have improved over the years, many patients continue to struggle with symptom control, uncertainty and reduced overall well-being. This highlights the importance of approaches that go beyond pharmacological innovations alone. It is also about helping people understand their condition, make informed decisions, and manage their health in everyday life.
This becomes even more important as new, more complex digital technologies are introduced into healthcare. Personalised prediction tools, for example, can estimate someone’s risk of developing a CID or experiencing a flare in the future. While this type of information has great potential to support prevention and timely intervention, it is not always easy to interpret. Questions quickly arise: what does a certain risk actually mean? How accurate is the prediction? And what actions, if any, can or should be taken based on this information? Without clear, accessible and meaningful communication, personalised disease predictions may be misunderstood or even cause unnecessary concern or anxiety. For digital innovations to be useful in practice, patients and healthcare professionals must be able to understand the information they provide and use it with confidence.
How PerPrev-CID Puts Health Communication into Practice
That is why communication research is an integral part of the PerPrev-CID project. Researchers from the Centre for Language Studies at Radboud University (the Netherlands) together with researchers from Università Cattolica del Sacro Cuore (Italy) and the international patient organisations EULAR and IFCCA, focus on understanding how information about personalised disease prediction can be communicated in ways that are clear, meaningful, and patient-centred. As a first step, they are conducting interviews with patients, at-risk relatives, and healthcare professionals to explore their information and communication needs. Additionally, a review of existing research will help to gain insight into which communication strategies have been effective in helping people understand (risk) information and make informed decisions about their health.
Building on these insights, the project team will work together with patients, healthcare professionals, and other stakeholders to co-design effective communication materials. This collaborative process ensures that the information developed reflects the real questions, concerns, and needs of the people who will ultimately use the personalised prediction tool. These materials will then be evaluated in an experimental survey to assess their effectiveness.
By integrating communication into the different stages of the project, PerPrev-CID ensures that technological innovation goes hand in hand with human understanding. In doing so, effective health communication can help bridge the gap between complex scientific advances and everyday care, so that personalised prediction tools can truly benefit the people they are designed to support.
Do you want to learn more about this communicative approach? Or would you like to contribute to the development and/or evaluation of effective communication strategies? Please contact our research team at Radboud University (the Netherlands):