Creating health awareness: a social media enabled ...

1 health Technol. DOI ORIGINAL PAPER. Creating health awareness: a social media enabled collaboration Liette Lapointe & Jui Ramaprasad & Isabelle Vedel Received: 1 August 2013 / Accepted: 5 December 2013. # IUPESM and Springer-Verlag Berlin Heidelberg 2014. Abstract social media has been an enabler of information sites and Web tools. The term health or medicine is dissemination, collaboration and coordination for reasons thus now commonly used [1]. Prior literature has examined ranging from personal to political. In healthcare, the context multiple means of collaboration for Creating health awareness we study here, information dissemination is a key mechanism through a variety of offline strategies, such as collaboration of Creating awareness, a crucial factor in the early detection among clinicians from various countries [2] and collaboration and prevention of diseases.

2 Thus, in this paper, we look at the through a network of community and university organizations role of social media in Creating cancer awareness. In particu- [3] to develop educational programs and campaigns. Some lar, we use a multiple case study analysis to examine how research has also examined IT- enabled strategies such as web- individuals and organizations use social media to collaborate services [4] for such collaborations. However, social media has to promote such awareness. We find that social media is used characteristics that enable communication, collaboration , con- to create an online community that drives the creation of sumption and creation in entirely new ways [5], which have not cancer awareness in many different ways and for multiple been examined in the current literature.

3 In this paper, we focus purposes. This research has implications for healthcare orga- on social media as an enabler of collaboration in the context of nizations in particular, who are looking to use social media to health care and examine how this collaboration can create promote awareness, as well as other organizations who may greater health awareness for individuals. want to use social media in this way. social media are now providing a space to discuss medical conditions outside of the healthcare providers' office [6]. Keywords social media . collaboration . Cancer awareness . Patients and their families use social media technologies to health care share their experiences and their findings and educate others with similar conditions.

4 They repackage the information they find for others, Creating forums for knowledge discovery and 1 Introduction discussion [6]. For example, approximately two-thirds of posts in Facebook communities dedicated to diabetes include The social computing phenomenon ( the proliferation of unsolicited sharing of diabetes management strategies and social media tools such as Facebook, YouTube, MySpace, over 13 % of posts provide feedback to information requested Twitter) is Creating a new reality in health care, bringing social by other users [7]. media to the forefront of health information generation and social media provides a forum for reporting personal ex- dissemination. Patients are changing from consumers of In- periences, asking questions, and receiving direct feedback for ternet content to generators of information using social media people living with a disease.

5 Through social media , support groups have found a new platform for organizing as patients L. Lapointe : J. Ramaprasad (*). and family caregivers share their experiences, seek consola- Desautels Faculty of Management, McGill University, tion online, and connect with others [6, 8]. Indeed, 620 breast 1001 Sherbrooke St. West, Montreal, QC H3A 1G5, Canada cancer groups exist on Facebook, containing a total of e-mail: 1,090,397 members. % of these groups were created for patient/caregiver support [9]. Healthcare professionals I. Vedel Faculty of Medicine, McIntyre Medical Building, are also using social media tools, with a growing number of 3655 Sir William Osler, Montreal, QC H3G 1Y6, Canada physicians in this group.

6 For example, individual physicians health Technol. can reach their patients through Twitter to update them with under-screening can be linked to patients' lack of knowledge therapeutic advancements, to answer disease-related ques- or awareness of screening tests and their lack of motivation to tions, or simply to provide advice or reminders [8]. undergo screening [16, 17]. Thus, increased awareness of More broadly, it has been shown that social media tools possible warning signs of cancer and the existence of and have enabled collaboration among individuals [10]. This can benefits to screening among the general public can have a occur in such contexts as employees who work together great impact on the disease trajectory.

7 Within the boundaries of formal organizations, to contexts There are many decisions that need to be made by both where dispersed individuals connect with one another through clinicians and patients with regards to screening or cancer the support of a common cause. In this paper, we seek to treatment options. Many guidelines thus point out the impor- understand how social media enables collaboration in the tance of informed decision-making in cancer screening [18]. context of healthcare, specifically to increase cancer aware- Since there is no best option for everyone, decisions are ness. Indeed, collaboration is considered essential in promot- defined as being of higher quality when they are informed ing cancer awareness [11, 12], as many different actors need to with the latest scientific evidence and are based on patients'.

8 Be involved in cancer prevention, detection and care. informed values associated with outcomes of the treatment Thus, in this study, we develop a model that allows us to options. However, clinicians are not good judges of patients'. understand how collaboration through social media sites can values, and patients often have inadequate knowledge, unre- drive increased cancer awareness. We use a multiple case alistic expectations, and decisional conflicts that interfere with study design, which includes qualitative analysis of documen- their involvement in decision making [19]. At the same time, tation, website analysis, and interviews. Our study identifies it is recognized as important to support patients with day-to- the multiple ways in which awareness is created: through day problems associated with cancer and treatment [20]; this educating and providing information, sharing testimonies, information and support can help friends and relatives cope providing support, raising funds, and advocating.

9 Our results with different stages of the illness better [21]. also provide a basis for understanding the process through which social media grassroots communities are built, ulti- Collaborating to promote cancer awareness mately allowing the optimal use of social media when collab- orating to promote health awareness. Low cancer awareness contributes to the delay in presentation of cancer symptoms and may lead to delay in cancer diagnosis [22]. Governments, healthcare organizations, and non-for- 2 Literature review profit societies thus support a variety of initiatives to raise awareness and understanding for cancer-related issues, with To understand the role that social media can play in cancer the ultimate goal of engaging the public in important health awareness, we look at three relevant streams of literature: (1) information.

10 Research has shown that a lack of knowl- literature on cancer and cancer prevention; (2) literature on the edge and understanding regarding cancer incidence, out- role of collaboration in aiding in efforts to promote cancer come and risk makes it unlikely that at-risk individuals, awareness; and (3) literature examining how social media has their friends and family, and even the general public can been shown to enable collaboration in other contexts. make informed decisions on a range of cancer issues [23]. It thus becomes essential to ensure the earliest aware- Context: the rising tide of cancer ness in terms of cancer screening [24], as well as provide support and coping strategies for cancer patients and their Cancer is a major public health issue in our society.