E-HealthExpert and experiential knowledge in the same place: Patients’ experiences with online communities connecting patients and health professionals
Introduction
In the past few years, virtual communities have rapidly increased in prevalence [1], [2], [3]. Virtual communities are social networks facilitated or formed online [4], “where people with common interests gather ‘virtually’ to share experiences, ask questions, or provide emotional support and self-help” [5:1]. Online communities are used in various sectors including healthcare, where they usually form around health-related conditions or goals, such as losing weight, living with back pain, or coping with disease.
Research on health-related online communities has explored how they are used and how users (mostly patients) experience them [6], [7], [8], [9], [10], [11]. Research on this topic primarily focuses on communities where patients or family members share experiences, also known as online patient support groups or peer-to-peer (P2P) communities. These studies indicate that patients who use P2P health communities are better informed about symptoms and treatments [7], [8], [9], [12], receive guidance on coping strategies [13], and find patient peers [12].
Online communities in which patients and physicians are linked (here defined as patient-to-doctor (P2D) communities) also exist [14], [15], but are currently under-researched. In these communities, patients and healthcare professionals are able to communicate with each other regardless of geographical location or the professional's institutional affiliation. An offline medical treatment relationship between the members of the community is generally absent, with the focus being on self-help rather than provision of health services. Although knowledge exists on the consequences of using P2D communities [see e.g. [16], [17], [18]], most studies focus on ‘ask the doctor forums’, rather than interfaces where questions can be posted to and answered by both patients and healthcare professionals.
This paper reports the results of a qualitative study of patients’ experiences with online self-help communities in which both physicians and patients participated. The research question was: How do patients experience the use of online P2D health communities and what are the consequences of such use? The research reported here addressed this question in relation to the Dutch website MijnZorgnet.nl (‘my health net’), an online platform where patients and healthcare professionals communicated and exchanged knowledge within online health communities. The insights gained in this study are relevant for practice because patients are increasingly obliged to stay informed about health matters [19], which potentially leads to greater use of online health communities for this purpose. More information about how patients experience both participation in P2D communities and consequences of such participation, enable reflecting on the informed patient discourse [20] in light of practical experiences.
Section snippets
Observations of online health communities
Qualitative research was conducted on a single case in the Netherlands: the website MijnZorgnet.nl. MijnZorgnet.nl provided an online platform where patients and healthcare professionals within online health communities could communicate and exchange knowledge, and was in that format online from late 2010 to late 2013 [15], [21]. The communities were supported by several applications, including blogging applications, forums, private messaging and wikis. These applications enabled end-users to
Different reasons for using P2D communities
In the P2D communities on MijnZorgnet.nl, information-seeking and information-provision processes were facilitated through blogging applications, forums, wikis and the option to save files. Through these applications patients and healthcare professionals posted various questions, answers and documents, such as newspaper articles. Topics varied widely, but included medication, treatment options, announcements of television broadcasts about a specific disease, insurance issues, and the
Discussion and conclusion
This study explored patients’ experiences with online P2D health communities. Patients use these communities to perform medical, emotional and lifestyle activities, such as preparing consultations or learning about latest scientific research. In P2D communities, two parties can provide relevant information: patients and healthcare professionals. Information from healthcare professionals is simultaneously considered as authoritative and therefore more reliable, but at the same time too limited,
Acknowledgments
The authors wish to thank the community managers for their cooperation and the respondents for sharing their thoughts and experiences with us. In addition we thank J. Kremer and B. Bloem for the opportunity to study MijnZorgnet.nl. Funding of this research was provided by MijnZorgnet.
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