Active participation in the care process is of paramount relevance in modern health care.[1] [2] [3] [4] It places the individual at the center of their own health journey, fostering a sense of empowerment and autonomy. When individuals are actively engaged in their care, they are more likely to make informed decisions, adhere to treatment plans, and take ownership of their well-being. This not only improves health outcomes but also enhances the overall patient experience.[5] [6] [7] Digital technologies have played a significant role in advancing the shift toward a more participatory health care paradigm, enabling all stakeholders involved in health care, such as clinicians, patients, or family members, to actively participate in health-related shared decision-making.[8] [9] Participatory health informatics (PHI) arose as a research topic around 10 years ago. It refers to the use of information technology as provided through the web, mobile phones, tablets, or wearables to increase participation of individuals in their care process. It has been applied in the context of various medical conditions requiring long-term disease management.[10] In recent years, research and development around PHI, that is, tools that support patient engagement and participation in care processes, has increased. The International Medical Informatics Association (IMIA) Working Group Participatory Health and Social Media devoted its work to this topic starting from 2017 as a consequence of the developments related to Medicine 2.0, social media, wearables, and mobile health applications.[11] Having re-badged the working group's name to “Participatory Health and Social Media” (previously just “Social Media”), this mission holds true today more than ever, while acknowledging that we have moved well beyond the narrative of Web 2.0, as participatory health technologies become more engaging and intelligent than before. Recognizing the increasing omnipresence of various participatory health enabling technologies, the scope and mission of the group is to not only bring together interested individuals but also help define and shape participatory health informatics. With this focus theme, we present current trends and new methods and approaches for placing the individual in the center of care. In addition, a first definition of PHI was developed and is made available as an essential part of this focus theme acknowledging the efforts of the working group members and researchers in this growing research field.

Article published online:
29 December 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany