Web 2.0 Platforms and Health Care: How Online Support Groups, Blogs and Social Networking Sites are Facilitating Online ‘Communities of Care’

26/04/2010 SheilaM 98 comments

Web 2.0 Platforms and Health Care: How Online Support Groups, Blogs and Social Networking Sites are Facilitating Online ‘Communities of Care’

Sheila McLean

April, 2010

Imagine this scenario: you have recently been diagnosed with a serious medical condition. Your doctor has outlined your treatment and prognosis, given you some leaflets and a handful of prescriptions to fill at the chemist. Your family and friends may be supportive to begin with, but they have never been through what you are going through, so how can they understand? You’d like to join a support group, but your work and family commitments mean you can’t get to meetings on the first Tuesday evening of each month. So what can you do? The answer is to use the internet – where you can find online community support and information for all sorts of conditions from “Alopecia Aerata” to “Zellweger Syndrome”. (Better Health Channel, 2010)

In 1997, Wellman and Gulia asked the following questions – “Can people find community online in the Internet?” and “Can relationships between people who never see, smell or hear each other be supportive and intimate?” (Wellman & Gulia, 1997, p1) This paper addresses Wellman & Gulia’s questions using a contemporary perspective. By defining the term “online community” and using examples of Web 2.0 social media platforms within the context of health information and support, this paper aims to demonstrate that the rapid growth and popularity of the internet, together with the rise of Web 2.0 platforms and the Health 2.0 movement, have created “communities of care” – supportive and intimate online networks comprising of patients, interested users and health professionals.

Virtual, or online, communities have existed on the Internet for over thirty years. Some of the earliest online communities were Usenet newsgroups, which started in 1979, and The Well, which began in 1985 (Ridings & Gefen, 2004). Ridings et al provide a comprehensive definition of a virtual community: “Groups of people, with common interests and practices that communicate regularly and for some duration in an organized way over the Internet through a common location or mechanism” (Ridings et al, 2002, p273).

The term “Web 2.0” began to emerge in 2004 to describe “the set of technologies which enable collaboration and sharing between Internet users.” (Norfolk, 2007) Prior to the emergence of Web 2.0 technologies, “patient and health communities were connected mainly through email discussion groups and chat rooms.” (Landro, 2006, p1) Web 2.0 platforms are ideal for hosting online communities – they encourage user-generated content; they are easy to use, and have removed most of the technological barriers that prevented users from creating online content in the past. Communication can be either asynchronous, as with blogging, or synchronous, as with real time on-line chatting through social networking sites or dedicated chat sites such as Skype.

As well as being used for hosting online communities, social media are “rapidly emerging as popular sources of health information” (Vance et al, 2009, p134). The internet itself has become a “significant source of health information for lay people” (Nettleton et al, 2005, p972), and indeed “on any given day in the USA, more people go on line for medical advice than actually visit health professionals” (Fox and Rainie, as cited by Nettleton et al, 2005, p972). As well as using the internet as a source of health information, users are increasingly become contributors – the Pew Research Center’s Internet & American Life Project found that of the 61% of adults surveyed who went online to look for health information, 20% had “actively contributed comments, reviews, and updates” (Pew, 2009).

In the report The Wisdom of Patients: Healthcare meets Online Social Media Sarasohn-Khan (2008, p2) describes how social media “are increasingly being used to empower, engage and educate consumers and providers in health care.” This movement towards “participatory health care” (Eytan, 2008) has been labelled ‘Health 2.0’ – people can be “effective partners in their own healthcare” and can “participate in reshaping the health system itself” (Eytan, 2008). This participatory environment “enables people with chronic health conditions to share their stories – not just for emotional support but for the clinical knowledge they gain from participating with ‘patients like me’ in an online community.” (Sarasohn-Khan, 2008, p2).

This increase in participation has been noticed by Susannah Fox, an associate director of the Pew Research Center’s Internet & American Life Project. In a press release, Fox commented “We are beginning to see e-patients turning to interactive features both to help them find information tailored to their needs and to post their own contributions.” (Pew, 2009). Patients use the internet “as a supplement to traditional sources of information, using blogs, podcasts, and other online resources to deepen their understanding of a condition and sharpen their questions for a health professional.” (Pew, 2009)

Chou et al’s 2007 study Social media use in the United States and its implications for health communication looked at three forms of social media: blogging, social networking and online support groups. Chou et al found that “in general, social media are penetrating the US population independent of education, race/ethnicity, or health care access.” (Chou et al, 2009) Furthermore, “considering implications of health communication efforts… social media promise to be a way to reach the target population regardless of socioeconomic and health-related characteristics”. (Chou et al, 2009)

Online support groups “emerged within health care as a result of the need individuals have to know more about health conditions they are confronting” (White and Dorman, 2001, p.693). Neil Sofian established one of the first social networking programs, focused on cancer, in 1999 and says “It’s so obvious that people learn through the experience of other people.” (Sofian, cited by Sarasohn-Khan, 2008, p.21). Im et al reported on a study they conducted on cancer patients who used online support groups. They found that:

Most of the participants wanted to use the groups for emotional support, information, and interactions. Many of the participants used online groups because they could reach out to other patients with cancer without travelling and without interrupting their busy schedules (Im et al, 2007).

van Uden-Kraan et al’s study of individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis found that the participants “felt empowered in several ways”. Participants reported they felt “better informed” and had “an enhanced social well being”. The study concluded that participating in online support groups “can make a valuable contribution to the empowerment of patients”, and that “health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.” (van Uden-Kraan et al, 2009, p61)

Blogs, being “both publication and communication tools” (Aguiton & Cardon, 2007, p54), provide an ideal medium for individuals to share their stories. They are an asynchronous form of communication: a blogger can post a message and then receive comments at a later date or time from a user who has read the blog and wishes to make a comment. Aguiton & Cardon (2007, p54) describe bloggers as producing “specific content in order to reach others and to start a conversation with them.” Sujin Kim’s research into blogging by cancer patients found that “Cancer patients, families, and providers increasingly use blogs and other communications technologies to learn about health, share information, and support one another.” (Kim, 2009, p1)

Blogs can often attract quite a “large and dedicated readership” because they “engage people in knowledge sharing, reflection, and debate” (Boulos et al, 2006). One such blog with a large readership is “Rheumatoid Arthritis Guy – Adventures of a superhero on his journey through chronic pain and debilitating inflammation”. Rheumatoid Arthritis Guy (or RA Guy for short) shares not only his journey through a chronic disease, but comprehensive information about auto immune diseases and their treatment. RA guy also has a Facebook profile with links to the blog, and also a Twitter presence, again which links back to the blog. The blog has multiple comments to each post, and additional comments are also posted on RA Guy’s Facebook profile whenever he puts a link to the blog.

The final social media platform that this paper will examine is that of social networking sites. boyd & Ellison (2007) defined social networking sites as “web-based services that allow individuals to construct a public or semi-public profile within a bounded system”. Chou et al’s study (2009) found that of the three forms of social media studied (blogging, online support groups and social networking sites) it was social networking sites that attracted the most users. Popular social networking sites include Facebook, Twitter and MySpace. Usage is increasing year by year – a December 2008 survey showed that the share of adult internet users in the US who have a social networking profile has quadrupled in 4 years, from 8% in 2005 to 35% in 2008 (Hawn, 2009)

Carleen Hawn’s “Take Two Aspirin and Tweet Me in The Morning: How Twitter, Facebook, And Other Social Media are Reshaping Health Care” relates the story of Rachael Baumgartel, a young diabetes sufferer:

Baumgartel….keeps a personal blog and sends ‘tweets’ almost daily to dozens of followers at a time… In return, she receives messages of encouragement from her friends and other followers who are helping her stick to an arduous health regimen. Baumgartel feels that using social media tools helps her to live with her disease. “Because I have people who follow me on Twitter,” she said, “it means I have some kind of audience that it caring for me in the background….I find support there, and it keeps me in line too.” (Baumgartel, cited by Hawn, 2009, p.364).

Landro (2006) reported on teenaged cancer sufferers and quoted an eighteen year old who connected to fellow patients, whom she had never met in person, through Facebook and MySpace while undergoing treatment – “we are all going through something similar, and it really is a community” (Mazik, cited by Landro, 2006, p2)

However, it is not just patients who are using social networking sites – they are also being used by health professionals and health organisations. Since Twitter “burst onto the social media scene, cancer centers[sic] and advocacy organizations[sic] have come to use it as a valuable tool for building the community of those who fight cancer.” (Butcher, 2009, p39) Health related not-for-profit organisations are increasingly turning to social media. A recent US study by Dr Nora Barnes from the University of Massachusetts showed that “89% of the nation’s 200 largest nonprofits [sic] used some form of social media last year, outpacing both the business world and academia, a percentage that is likely even higher now.” (Barnes, cited by Butcher, 2009, p.39)

The McGrath Foundation is an Australian organisation set up both to raise funds for breast care nurses and to promote the awareness of breast cancer amongst young women. The Foundation has a Facebook fan page with over 135,000 fans, making it the 28^th most popular Australian fan page (Papworth, 2010). The Foundation also recently joined Twitter (McGrath Fdn, 2010). The advantages of social media marketing for organisations such as the McGrath Foundation are that it “carries the advantages of low cost, rapid transmission through a wide community, and user interaction” (Vance et al, 2009, p134).

Doctors are also connecting online “to share quandaries about challenging cases and solutions that work. Researchers are coming together with patients to learn about side effects in real time to improve therapeutic regimes.” (Sarasohn-Khan, 2008, p2) . David J. Sampson is a Director of Medical & Scientific Communications for the American Cancer Society. Sampson has likened Twitter to “a good professional conference that never ends…you get to see people you don’t normally get to see and interact with them in a way that combines their personal approach and the typical professional working interaction—that’s what I enjoy about it most.” (Sampson, cited by Butcher, 2009, p36).

Many health businesses are also turning to Web 2.0 technologies for their service delivery. “Hello Health” is one such a company. The company hosts a website featuring doctors who consult on line. For a monthly fee, patients can register with the site and then use the services as required, for example there is instant messaging and virtual consultations available, however patients can still elect to see a doctor for a personal consultation, if they prefer. (Hawn, 2009, p361).

Researchers have in recent years started to look at the impact online social networking has on a user’s health. US researchers found that for psoriasis sufferer’s (a skin disease), using online support sites did “improve the participants’ perceived quality of life – even though there was only limited improvement in the severity of the disease itself” (Idriss et al, 2009, p47).

Even before the Internet became widely available, evidence showed that social networks had a positive effect on health. Sarashohn-Khan (2008, p4) described how a 1979 California study showed that:

“people with the lowest levels of social contact had mortality rates two to four and a half times greater than those with strong social networks. Since that time, further research has shown that a supportive social network improves health outcomes for people with a wide range of conditions”.

Researchers at the Center for Connected Health in the US found “social health support networks can provide a good source of information, as well as psychological and social support” (McGilvray, 2009, p2)

Whether it is finding information about a particular health issue, or garnering support, the use of Web 2.0 platforms has enormous potential for both health care providers and patients. Social networks have a positive impact on our health. Becoming more informed about our health is empowering. By using social media it is possible for participants to create a ‘community of care’: a supportive online network comprising of “groups of people with common interests and practices” (Ridings et al, 2002, p273). These ‘communities of care’ answer both of Wellman & Gulia’s questions in an affirmative manner – people can find community on the internet, and the relationships people form in these communities can be supportive and intimate.

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