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PDF hosted at the Radboud Repository of the Radboud University Nijmegen The following full text is a publisher's version. For additional information about this publication click this link. http://hdl.handle.net/2066/123511 Please be advised that this information was generated on 2021-09-29 and may be subject to change. #HCSM Social Media and Wikis in Healthcare For reasons of consistency within this thesis, some terms have been standardized throughout the text. As a consequence the text may differ in this respect from the articles that have been published. The studies presented in this thesis have been performed at the Nijmegen Centre of Evidence Based Practice (NCEBP), one of the approved research institutes of the Radboud University Medical Centre. Financial support by the Afdeling Verloskunde en Gynaecologie, Radboudumc and Radboud REshape & Innovation Center for the publication of this thesis is gratefully acknowledged. ISBN: 978‐90‐76316‐925 Copyrights: Chapter 2, 3, 4, 5, 6: JMIR Publications Inc. Chapter 7: Informa UK Ltd. Cover design: Hans Huizing Print: GVO drukkers en vormgevers B.V. | Ponsen & Looijen, Ede © T.H. van de Belt, Nijmegen, 2013 No parts of this thesis may be reproduced, stored or transmitted without the prior written permission of the author or, when appropriate, the publishers of the articles. #HCSM Social Media and Wikis in Healthcare Proefschrift ter verkrijging van de graad van doctor aan de Radboud Universiteit Nijmegen op gezag van de rector magnificus prof. mr. S.C.J.J. Kortmann, volgens besluit van het college van decanen in het openbaar te verdedigen op vrijdag 7 februari 2014 om 12.30 uur precies door Thomas Hendrik van de Belt geboren te Arnhem op 13 december 1982 Promotoren: Prof. dr. J.A.M. Kremer Prof. dr. M. Samsom Copromotoren: Dr. L. Schoonhoven Dr. M.J. Faber Manuscriptcommissie: Prof. dr. W.J.J. Assendelft Prof. dr. A.W.M. Evers Dr. B. Mesko (Medical Futurist/Webicina, Hungary) Contents Title Page Chapter 1 General introduction 7 Chapter 2 Definition of Health 2.0 and Medicine 2.0: A Systematic Review. 15 J Med Internet Res 2010;12(2):e18. Chapter 3 Use of Social Media by Western European Hospitals: Longitudinal Study. 35 J Med Internet Res 2012;14(3):e61. Chapter 4 Internet and Social Media for Health-Related Information and 49 Communication in Health Care: Preferences of the Dutch General Population. J Med Internet Res 2013;15(10):e220. Chapter 5 Wikis and Collaborative Writing Applications in Healthcare: A Scoping 71 Review Protocol. JMIR Res Protoc 2012;1(1):e1. Chapter 6 Wikis and Collaborative Writing Applications in Healthcare: A Scoping 91 Review. J Med Internet Res 2013;15(10):e210. Chapter 7 Wikis to Facilitate Patient Participation in Developing Information Leaflets: 183 First Experiences. Inform Health Soc Care; Accepted. Chapter 8 Evaluation of Patients' Questions to Identify Gaps in Information Provision 201 to Infertile Patients. Provisionally accepted. Chapter 9 General discussion 217 Summary 235 Samenvatting 243 Dankwoord 251 Curriculum Vitae 257 PhD theses Human Reproduction NCEBP (2000–2014) 259 1 General Introduction 8 Chapter 1 Last decade, Internet access and use have increased enormously. A vast majority of people in the western world uses the Internet on a daily basis, for an abundance of purposes. It affects their work, social lives and leisure time [1,2]. Finding job vacancies, products or even a potential partner is easy. Internet also allows social virtualization [3], which means that people connect online with their friends, using social media like Twitter, YouTube and Facebook. As a result, the online world has become an integral part of our society and is rapidly changing the way people are connected and interact with each other. Where the baby boomers (born between World War 2 and 1960) and "generation X" (born between 1960 and 1980) [4] were mostly connected through real-life groups like church, colleagues and a sports team, nowadays’ people are increasingly enrolled in many, often online social networks. An 'offline to online trend' is recognized [5]. Using this full potential of Internet and particularly social media, individuals acquire the ability to perform things that were difficult or impossible in the past. An example is the recent revolutions in the Middle East. Civilians started using social media to communicate and to share information. It enabled them to unite and arrange effective protests. In the end, they sometimes successfully revolted against their leaders. Although revolutions have happened without social media in the past, it is believed that it played a crucial role [6-8]. Supported by social media, consumers also obtained a new role in the public and commercial sector. They want business organizations to take their opinion very seriously [9]. The new role of consumers has tremendous consequences for the business world and business models [10]. Consumers not only buy and compare products online, but they also discuss product features and brands with other consumers or friends. For example, an individual that is looking for a hotel on booking.com can make use of other people's experiences with, and recommendations about hotels. Sometimes even specified for his age, gender and marital status. Not surprisingly, it is unlikely that this person will select a hotel if an earlier visitor has shared negative experiences (e.g. dirty rooms, poor Wi-Fi connection) about it. As a result, hotel owners should listen to their guests and deal with problems immediately, particularly because customers' experiences can spread very quickly. If they don't, they risk their guests staying away. Wiederhold et al. described that a shift of power has occurred [11]. The new role of consumers can even affect a business company's sales, reputation and survival [10]. Consequently, entrepreneurs need to find new business models as the models that have been successful for decades have become less appropriate. Technological advances Currently, we are in the middle of a period in which our economy is mainly based on information computerization, which is also known as the information age [12]. It is the result of a digital revolution, sometimes described as the third Industrial Revolution [13]. Especially the Internet has altered the way we exchange information. Until ten years ago, the Internet was primarily a one- way 'download environment' in which users were able to visit webpages and to download content like written text, audio and video. Supported by technological developments, it evolved to an General introduction 9 environment with interactive components. This modified version of the web in which participation is stimulated and users are empowered is often described as "Web 2.0" [14-16]. More specifically, it is defined as "a set of economic, social, and technology trends that collectively form the basis for 1 the next generation of the Internet, a more mature, distinctive medium characterized by user participation, openness, and network effects" [17]. One of the key features is user-generated content, which means that Internet users have become contributors [15,18]. They can quickly share information via social media channels e.g. posting a photo on Flickr, a video on YouTube or a story on a blog. A second feature of Web 2.0 is the possibility to efficiently find content. Although user-generated content has led to an almost unimaginable abundance of online data, finding relevant information is still relatively easy. Smart search engines like Google support users to find the most relevant sources (including social media resources) quickly. Since most content is shared on social networks, users simply have to find those groups to get access. Third and last, people can use the Internet independently from time and place [19,20]. They no longer need a desktop computer or a laptop but can use tablet PCs, smartphones or smart televisions to connect to the web. Since Social Media are one of the main manifestations of Web 2.0, its features have been studied separately. Kaplan et al. (2010) describe social media as "a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of User Generated Content" [18]. In this thesis, we define social media following the classification scheme presented by Hoffman and Novak, 2012, who recognize that social media engage people and identify four main social media features: (1) Connect (e.g. with peers), (2) Create (e.g. creating blogposts, tweets), (3) Consume (e.g. watch a video) and (4) Control (e.g. rate contributions) [2]. Health 2.0 As Internet and social media facilitate change of our entire society, they also affect health care. Different terminology has been used. In 2006, the term Web 2.0 was introduced to health care by Giustini (2006) [21]. He described that the interactive component of Web 2.0 could affect health care in a positive way. For example, blogs and collaborative writing tools like wikis could facilitate participation and efficient dissemination of knowledge, and other tools like RSS allow health care professionals to retrieve knowledge efficiently. Later on, the terms "Health 2.0" and "Medicine 2.0" appeared, as a synonym for the use of Web 2.0 technology in health care [22]. However, the two terms may entail more than simply "Health + Web 2.0" [23]. Furthermore, no uniform definition of Health and Medicine 2.0 exists [24], and debate about the definition is ongoing [25- 27]. Social media and health care Although the effects of social media on health care have not yet been studied intensively and there is no "gold standard" evidence [3], it is expected that the collaborative nature of Web 2.0 technology and social media can lead to quality improvements in health care, via several ways.