Projects / Programmes
Opportunities and dangers of online health communities for healthcare
| Code |
Science |
Field |
Subfield |
| 5.03.00 |
Social sciences |
Sociology |
|
| Code |
Science |
Field |
| S210 |
Social sciences |
Sociology |
| Code |
Science |
Field |
| 5.04 |
Social Sciences |
Sociology |
sociology of health and illness, online health communities, patient-doctor relationship, empowerment, quantitative and qualitative methods
Researchers (10)
Organisations (2)
Abstract
Opportunities and dangers of online health communities (OHCs) for healthcare
Scientific background: 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.
Problem identification: Existing research on OHCs is characterised 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?
Research objectives: 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.
Methods and analyses: 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.
Relevance and impact: 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.
Project management and implementation: 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.
Significance for science
The power of the empowerment concept. Despite – or perhaps because of – warnings that the concept of empowerment is losing its analytical value, it is necessary to both advance the conceptualization of empowerment and demonstrate its analytical power in investigating mechanisms which link online health communities (OHCs) and healthcare. Transcending dominant individualistic understandings of empowerment is necessary as stronger analytical power resides in the distinction between levels of empowerment (individual, interactional, collective) and the interrelations among them.
Internet-related factors of the patient-doctor relationship and its impacts on healthcare. The patient–doctor relationship is an important concept not only in the sociology of health, but in classical sociological literature as well, where it is a central concept; likewise, it is an essential component of successful healthcare. Currently, the research has predominantly focused on the opportunities and/or danger of Internet for mutually isolated actors. By introducing the concept of mutual empowerment, we offer a strong theoretical and methodological tool for transcending the limitations of existing perspectives. Such concepts will gain further significance in the coming years as innovations in healthcare, such as electronic health records and mHealth applications, become more prominent.
Impacts of misleading information. Only with the recent popularity of the ‘fake news’ concept has e-health research begun to acknowledge warnings about filter bubbles and the echo chamber effect, both referring to how users can unintentionally become locked in a biased information space, which can have problematic impacts also in terms of health outcomes. Our project will make important contributions to this serious issue by delineating sociocognitive and structural processes underlying both the spread and prevention of misinformation in OHCs and social media in general. In addition, the project will introduce a framework for the empirical analysis of the consequences of misinformation posted in OHCs.
The development of a methodology for the empirical investigation of OHCs as socio-technical systems represents an important advancement that transcends the limitations of existing, fragmented approaches. Social network analysis and text mining have become popular methods, but they are limited to explorative and incomplete investigations. Our research design will demonstrate how these methods can be used to both measure structural properties of OHCs and explain individual and interactional phenomena.
National and international collaboration of researchers and institutions will be very important in the proposed project. That said, we are establishing a transdisciplinary collaboration with the Oncological Institute and Faculty for Health Sciences and have extended it to include Nottingham University, thereby laying the groundwork for the establishment of an international network of OHC researchers.
Significance for the country
The power of the empowerment concept. Despite – or perhaps because of – warnings that the concept of empowerment is losing its analytical value, it is necessary to both advance the conceptualization of empowerment and demonstrate its analytical power in investigating mechanisms which link online health communities (OHCs) and healthcare. Transcending dominant individualistic understandings of empowerment is necessary as stronger analytical power resides in the distinction between levels of empowerment (individual, interactional, collective) and the interrelations among them.
Internet-related factors of the patient-doctor relationship and its impacts on healthcare. The patient–doctor relationship is an important concept not only in the sociology of health, but in classical sociological literature as well, where it is a central concept; likewise, it is an essential component of successful healthcare. Currently, the research has predominantly focused on the opportunities and/or danger of Internet for mutually isolated actors. By introducing the concept of mutual empowerment, we offer a strong theoretical and methodological tool for transcending the limitations of existing perspectives. Such concepts will gain further significance in the coming years as innovations in healthcare, such as electronic health records and mHealth applications, become more prominent.
Impacts of misleading information. Only with the recent popularity of the ‘fake news’ concept has e-health research begun to acknowledge warnings about filter bubbles and the echo chamber effect, both referring to how users can unintentionally become locked in a biased information space, which can have problematic impacts also in terms of health outcomes. Our project will make important contributions to this serious issue by delineating sociocognitive and structural processes underlying both the spread and prevention of misinformation in OHCs and social media in general. In addition, the project will introduce a framework for the empirical analysis of the consequences of misinformation posted in OHCs.
The development of a methodology for the empirical investigation of OHCs as socio-technical systems represents an important advancement that transcends the limitations of existing, fragmented approaches. Social network analysis and text mining have become popular methods, but they are limited to explorative and incomplete investigations. Our research design will demonstrate how these methods can be used to both measure structural properties of OHCs and explain individual and interactional phenomena.
National and international collaboration of researchers and institutions will be very important in the proposed project. That said, we are establishing a transdisciplinary collaboration with the Oncological Institute and Faculty for Health Sciences and have extended it to include Nottingham University, thereby laying the groundwork for the establishment of an international network of OHC researchers.
Most important scientific results
Interim report
Most important socioeconomically and culturally relevant results
