Principal investigator at the Institute of Oncology Ljubljana: Asst. Prof. Rok Petrič
Online health communities (OHCs) are online communication spaces, which enable interactions between patients, caregivers and health-professional moderators and cover a variety of health conditions. OHCs have become one of the most important and popular eHealth applications, often serving as primary sources for receiving health-related information, support and professional consultations. Uses of OHCs have important consequences for healthcare, especially for its two essential components – for patients and patient-doctor relationship. It is unsurprising that the Global Observatory of eHealth of the World Health Organization has made investigating the effects of OHCs on healthcare a top priority.
Existing research on OHCs is characterized by psychological studies, focusing on the concept of individual empowerment. The field of research, however, has been unable to address several crucial issues identified in more recent research, such as: 1) What if individual empowerment is based on misinformation, and how would this impact health outcomes and relationships with doctors? 2) Is the empowerment obtained via OHCs leading to more cooperative relationships with doctors; and if so, under what conditions? 3) What are the impacts of the within-community social processes and community management of OHCs on healthcare?
Our main goal is to develop a socio-technical model of empowerment in OHCs that will permit us to empirically investigate opportunities and dangers of OHCs for healthcare. The main hypothesis is that empowerment is a crucial intermediary mechanism between social processes in OHCs and impacts on healthcare. The latter are in this study focused on crucial patient-related perspectives on three levels of healthcare: a) individual level: achieving positive health outcomes, b) interactional level: achieving cooperative relationships with doctors, and c) system level: achieving effective access to healthcare services.
The project will combine different disciplines and methodologies to offer innovative tools for studying the impacts of OHCs on healthcare. First, a theoretical model will be developed by integrating empowerment, social support, online community management and misinformation in social media theories on the one hand, and qualitative insights into within-OHC processes and their impacts on healthcare on the other. The proposed theoretical model will be tested with a multilevel structural equation approach employing three data modes: 1) structural characteristics, obtained with social network analysis; 2) quality of information, obtained by coding OHC messages; 3) individual and interactional characteristics, obtained via online survey. The model will be tested on two OHCs – one general and one for cancer-related issues.
This project represents an innovative transdisciplinary study, the results of which will contribute to necessary advancements in theoretical frameworks for understanding OHCs as socio-technical systems as well as their impacts on healthcare. Moreover, the project will provide a much-needed revision of the empowerment concept and open new avenues for its application. The project will generate a theoretical and methodological framework for studying misinformation in social media. The project also has applicative value, as its results can lay the basis for the formulation of strategies and measures for OHC management and their integration into the healthcare system.
The project will be completed by a transdisciplinary group of accomplished and internationally recognised scholars from a range of fields, including sociology of health, internet studies, network analysis, statistics, health sciences and oncology. The project will be divided into eight interconnected work packages, each with clear objectives.