Ever since the first iPhone was introduced in 2007, smartphones have become an indispensable part of our world. Through a variety of mobile apps, people all over the world consume, collect, and measure all kinds of digital information in their daily life. In healthcare, this development results in a democratization process: it breaks up the information monopoly formerly held by well-trained experts to lay people – who now have the key to their personal health at their fingertips. The advance of genetic testing and personalized medicine bring this trend further forward, enabling health care professionals and patients to rely on more individualized approaches. However, there is a reason that becoming a health care professional requires extensive training and education; especially health information often is complex and involves uncertainty. When communicating health information to lay people in order to empower them to take action – which may include consulting an expert – the information needs to be comprehensible and to correspond to the regarding amount of health literacy.
This project aims to personalize health information communication by digital means to make it comprehensible for people at different levels of health literacy. This involves (1) assessing health literacy, (2) developing user-validated, adaptive communication strategies, and (3) assessing comprehension.
To assess health literacy, different validated questionnaires were developed, for example the Health Literacy Questionnaire (HLQ). Various communication strategies were developed to build upon, e.g., applications like KardioKompassi (https://kardiokompassi.fi/), MyGeneRank (https://mygenerank.scripps.edu/), and RisikoAtlas (https://www.risikoatlas.de). Comprehension could also be assessed via questionnaires – defining the key knowledge to be communicated is part of the co-creation process and creating the questionnaires could also be seen as an analogy to test-driven development from software engineering. Potentially, also screen interaction or facial expressions could be utilized.
The approach will be developed in context of different use cases and will be tested in controlled evaluation studies. In a first use case, we focus on the communication of genetic testing results with regard to pharmacogenomics and their implications on medication effects. Moreover, in a second use case we will examine the management of metabolic health, which is of high clinincal relevance since obesity is a high-risk factor for many noncommunicable diseases with a high global disease burden.
Ultimately, with comprehensible health information communciation by digital means (CHIC), people shall be empowered to take their health in their own hands and life a healthier life.