Opportunities and dangers of online health communities for healthcare

General information

Code: J5-9336
Period: 1.7.2018 - 30.6.2021
Range on year: 0.43 FTE | 2018
Project leader at FDV: prof.dr. Gregor Petrič
Research activity: Social sciences

Abstract

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. Project publications and results: Original scientific papers: ATANASOVA, Sara, PETRIČ, Gregor. Collective empowerment in online health communities: scale development and empirical validation. Journal of medical internet research: JMIR. Nov. 2019, vol. 21, no. 11, ilustr. ISSN 1438-8871. https://www.jmir.org/2019/11/e14392, DOI: 10.2196/14392. [COBISS.SI-ID 36474205] Conference papers: ATANASOVA, Sara, KOINIG, Isabell. Individual empowerment from a health communication lens: negotiating meaning between health and disease. V: Health communication dynamics in turbulent times: book of abstracts, pp. 115-116. European Conference on Health Communication, 4-5 November 2021. https://www.echc2021.eu/wp-content/uploads/2021/11/Book_of_Abstracts_ECHC2021.pdf. [COBISS.SI-ID 84210435] ATANASOVA, Sara, KAMIN, Tanja, PETRIČ, Gregor. The differences between the effects of online support groups, counselling, and socializing forums' affordances on patient empowerment in online health communities: presentation at the 7th European Communication Conference, Lugano, 31. 10. - 3. 11. 2018. [COBISS.SI-ID 35887965] ATANASOVA, Sara, KAMIN, Tanja, PETRIČ, Gregor. Impact of online health communities on transformation of doctor-patient relationship. V: Book of abstracts. [Graz: Technische Universität, 2019]. https://stsconference.isds.tugraz.at/event/2/attachments/1/22/BoA2019_-_STS_Conference_Graz.pdf. [COBISS.SI-ID 36134749] ATANASOVA, Sara, KAMIN, Tanja, PETRIČ, Gregor. Vpliv participacije in različnih oblik kapitala na individualno opolnomočenje uporabnikov spletnih zdravstvenih skupnosti. V: IGNJATOVIĆ, Miroljub (ur.), KANJUO-MRČELA, Aleksandra (ur.), KUHAR, Roman (ur.). Znanost in družbe prihodnosti. Slovensko sociološko srečanje, Bled, 18.-19. oktober 2019. 1. natis. Ljubljana: Slovensko sociološko društvo, 2019. Str. 64-68, tabela. ISBN 978-961-94302-3-1. [COBISS.SI-ID 36400733] ATANASOVA, Sara, KAMIN, Tanja, PETRIČ, Gregor. The role of e-health literacy in patient empowerment in online health community. V: STARC, Andrej (ur.), MILAVEC KAPUN, Marija (ur.), FICZKO, Jelena (ur.). Digital technologies and health ecosystems: book of abstracts. Ljubljana: Faculty of Health Sciences, 2019. Str. 17. http://www2.zf.uni-lj.si/images/stories/datoteke/Zalozba/HealthOnline_2019.pdf. [COBISS.SI-ID 36302685] ATANASOVA, Sara, PETRIČ, Gregor. Empowered, but not fully empowered: a cluster analysis of online health community users' individual and collective empowerment. V: Book of abstracts. Zurich: University, [2019]. Str. 226-231. https://echc2019.files.wordpress.com/2019/11/boa_echc2019-1.pdf. [COBISS.SI-ID 36474973] ATANASOVA, Sara, PETRIČ, Gregor. Social and structural factors of collective empowerment in online health communities: presentation at the 3rd NKL Conference, December 5, 2019, Faculty of Social Sciences, Ljubljana. [COBISS.SI-ID 36499037] Research reports: ATANASOVA, Sara. Kvalitativna raziskava projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo: raziskovalno poročilo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2020. 77 str., ilustr. [COBISS.SI-ID 13457155] CUGMAS, Marjan, PETRIČ, Gregor. Analiza interakcijskih struktur v spletni zdravstveni skupnosti MedOverNet: raziskovalno poročilo projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2021. 16 str., ilustr. [COBISS.SI-ID 51021315] CUGMAS, Marjan, PETRIČ, Gregor. Identifikacija z rakom povezanih sporočil v spletni zdravstveni skupnosti MedOverNet: raziskovalno poročilo projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2020. 48 str., ilustr. [COBISS.SI-ID 28792067] ATANASOVA, Sara, PETRIČ, Gregor. Poročilo o anketnem zbiranju podatkov projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo: Oblikovanje, testiranje in evalvacija anketnega vprašalnika: raziskovalno poročilo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2021. 40 str., ilustr. [COBISS.SI-ID 67907587] ATANASOVA, Sara, CUGMAS, Marjan, PETRIČ, Gregor. Poročilo o anketnem zbiranju podatkov projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo: Postopek zbiranja podatkov in ocena kvalitete zbranih podatkov: raziskovalno poročilo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2021. 42 str., ilustr. [COBISS.SI-ID 81590019] CUGMAS, Marjan, PETRIČ, Gregor. Poročilo o analizi kvalitete z zdravjem povezanih informacij v spletnih zdravstvenih skupnostih: raziskovalno poročilo projekta Priložnosti in nevarnosti spletnih zdravstvenih skupnosti za zdravstvo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2021. 21 str., ilustr. [COBISS.SI-ID 81593091] ATANASOVA, Sara, CUGMAS, Marjan, PETRIČ, Gregor. Poročilo o empiričnem preverjanju vpliva uporabe spletnih zdravstvenih skupnosti na različne vidika zdravstva: raziskovalno poročilo. Ljubljana: Fakulteta za družbene vede, Center za metodologijo in informatiko, 2022. 35 str., ilustr. [COBISS.SI-ID 112953603]

The phases of the project and their realization

WP 1. Development of initial theoretical model Description: The purpose of this work package is to develop a comprehensive initial theoretical model that will serve as the basis for analysis and advancement throughout the entire project. Specific objectives: • To conduct a critical comparative literature review on the effects of OHCs on different levels and stakeholders in healthcare; • To provide a detailed evaluation of the current state of use of OHCs in Slovenia and UK at large; • To identify an additional OHC dedicated to cancer-related issues and gain their cooperation; • To develop the initial theoretical model. WP 2. Qualitative data collection and analysis Description: The purpose of this work package is to provide new insights into the impacts of OHCs on users’ health outcomes, the patient–doctor relationship and access to healthcare services that will help us to advance the initial theoretical model. To achieve this goal, we will conduct in-depth, semistructured interviews with (1) MON users, (2) MON health professional moderators, (3) MON community managers and administrators, and (4) health professionals/specialists from the Oncological Institute. Specific objectives: • To obtain data on experiences of OHC effects on different aspects of healthcare; • To analyse collected qualitative data; • To advance the initial theoretical model; • To provide insights for the development of measurement instruments in WP 3, WP 4 and WP 5. WP 3. Measuring structural properties of OHCs Description: OHC users typically visit and participate in specific spaces, called threads or online groups, which are dedicated to specific health conditions or related topics. These groups differ in terms of management, regulation, communicative dynamics, etc. Since membership in these online groups has an important impact on users and their empowerment, it is important to include group-level variables in the explanatory model. The purpose of this work package is thus to measure various structural characteristics of online groups by performing social network analysis and applying a text mining approach on the dataset of public messages in the studied OHCs. Specific objectives: • To obtain measurements of various structural properties of online groups in OHCs; • To identify online groups (and moderators) wherein messages relating to cancer are exchanged; • To provide a dataset with messages related to cancer as an input for coding (WP 4). WP 4. Content analysis for measuring quality of online health information Description: The quality of exchanged information in OHCs is one of the most controversial elements when discussing the potential opportunities and dangers of OHCs for healthcare. The purpose of this work package is to evaluate and quantify the quality of health information exchanged in studied OHCs and pertaining to cancer and related issues. Specific objectives: • To analyse and compute quality of health information for each online group wherein messages about cancer or related topics were exchanged. WP 5. Online survey Description: The purpose of this work package is to collect survey data on individual-level concepts in the proposed theoretical model (empowerment and disempowerment, perceived norms and regulations in OHCs, users’ health outcomes, patient–doctor relationship, access to healthcare services, e-health literacy, informational and emotional support). Specific objectives: • To collect survey data on the individual-level concepts from the theoretical model. WP 6. Multilevel data analysis Description: The main purpose of this work package is to integrate quantitative data from different data-collection work packages into a single dataset, which will in turn be used to empirically test the proposed theoretical model. Specific objectives: • To test a holistic theoretical model on general users of OHCs and on users who visit/participate in online groups where cancer-related discussions occur; • The proposal of an optimized theoretical model. WP 7. Dissemination of the scientific results Description: The purpose of this work package is to disseminate the scientific findings and results obtained in different stages of this research project. An intensive dissemination of our results will contribute to the production and exchange of new knowledge, insights and understandings of the effects of OHCs on healthcare, thereby providing a platform for advances in this scientific field. Specific objectives: • To achieve the maximum dissemination and application of the scientific results of the project; • To publish theoretical and empirical results in international academic journals; • To present the results at international and national scientific conferences, meetings, congresses or symposia; • To create and maintain the official website of the project. WP 8. Overall project management Description: Overall project management, including administrative and scientific management, will ensure the successful realisation of all project activities in the work programme. Specific objectives: • Coordination of research group and research activities; • Monitoring the execution of project activities in accordance with established objectives; • Monitoring the quality of project activities, output and deliverables; • Monitoring and execution of administrative duties; • Budget monitoring and reporting; • Monitoring the effective transmission of findings between individual parts of the research; • Organising meetings and communication for the research group and potential problem solving.

Research Organisation

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Researchers

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Citations for bibliographic records

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