Keywords: <\/em>Web 2.0, online health communities, virtual communities, chronic health, weak ties, privacy, patient-physician relationship, social support, empowerment, PatientsLikeMe, healthcare, social network<\/p>\n\n\n\n Download PDF<\/a><\/p>\n\n\n\n Online Health Communities: Benefits, Privacy Concerns and a Shift in the Traditional <\/a> Patient-Physician Dynamic Virtual Health Communities\n(VHCs) or Online Health Communities (OHCs) have grown at an unprecedented rate\nsince the advent of the internet and more interactive, collaborative and participatory\nonline technologies, known as Web 2.0 applications <\/a>(Colineau & Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011;\nJohnston, Worrell, Di Gangi, & Wasko, 2013; Zhou, 2018; Zigron &\nBronstein, 2019). As a result, social media and the affordances of associated Web 2.0\ntechnologies are unquestionably transforming the way individuals progressively\nsearch for information and take control of their health, particularly those\nwith chronic illnesses (Bradley, Braverman, Harrington, & Wicks, 2016; Fischer\n& Soyez, 2015). Accordingly, Web\n2.0 technologies with healthcare-related content is termed: Health 2.0 (Fischer\n& Soyez, 2015; Zhou, 2018). Johnston, Worrell, Di Gangi, and Wasko (2013) contend\nthat OHCs offer people access to unique resources irrespective of geographical boundaries,\ntime, or privacy restrictions (p. 214). In Health 2.0, apomediation is the term used when people seek health information online\nand have removed intermediaries that have been traditionally used in the\nprocess of sourcing and accessing health information (Fischer & Soyez,\n2015, p.199). Unsurprisingly, medical professionals are no longer the\ngatekeepers of medical knowledge; as intermediaries, they have been substituted\nor complemented by Web 2.0 technologies and peers in OHCs who now share and provide\ncredible information (Fischer & Soyez, 2015, p. 199). As argued by Aguiton\nand Cardon (2007), Web 2.0 affordances can be characterised by the astounding upsurge\nof publicly social\nconnections that are facilitated by communities on the\ninternet, the expansion of contacts made, and the formation of a new kind of weak\nbond or relationship (Aguiton & Cardon, 2007, p. 55). This trend of \u201cweak\nties\u201d relationships in communities continues to accelerate (2007, p. 61),\nparticularly in OHCs such as PatientsLikeMe (PLM), highlighting the importance\nof these social relationships created in mediated spaces. While Web 2.0\nplatforms have enabled individuals to better manage their chronic illness and\nstrengthen weak ties in OHCs, this is not without risk to\ntheir privacy and the disruption to the traditional patient-physician\nrelationship.<\/a><\/p>\n\n\n\n A 2014 survey conducted by the Pew Research Institute in the United\nStates revealed that 70% of respondents were more interested in health-related\nissues than any other topic on the internet (Zigron & Bronstein, 2019, p.\n131). Several studies on OHCs have corroborated the assertion that people are\nno longer wholly dependent on medical professionals for health information and\ntreatment decisions (Broom, 2009; Camerini, Diviani, & Tardini, 2010; Colineau\n& Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011; Johnston et al.,\n2013; Zigron & Bronstein, 2019). Furthermore, various academics claim that\nOHCs represent a key source for medical informational retrieval and support,\nparticularly for chronically ill individuals (Bradley et al., 2016; Colineau\n& Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011; Johnston et al.,\n2013; Zhou, 2018; Zigron & Bronstein, 2019). According to a 2013 Fox\nsurvey, more than 50% of American people with chronic illnesses actively managed\nblogs and engaged in discussions on OHCs (as cited in Zigron & Bronstein,\n2019, p. 131). VHCs enable individuals with health challenges to participate in\nsupportive communiqu\u00e9 with other people coping with similar medical issues that\nwould otherwise be problematic or impossible to establish in the real world (Zigron\n& Bronstein, 2019, p. 130). PatientsLikeMe.com (PLM), is an example of a\nsocial networking platform in which \u201cshared patient experiences contribute to\nimproved health self-management and support clinical knowledge\u201d (Fischer &\nSoyez, 2015, p. 197). <\/p>\n\n\n\n Web 2.0 technologies facilitate VHCs, shape social relationships that exist only online in their social interactions amongst those that connect with and share a common interest or problem (Zigron & Bronstein, 2019, p. 130). The notion of weak ties in virtual spaces arises from the community as a source of diverse information, and the type of social connections between community members that nurture a sense of belonging\u2014a sense of community (as cited in Zigron & Bronstein, 2019, p. 130). The strength of a tie is described by renowned sociologist, Mark Granovetter, \u201cas the combination of the amount of time, the emotional intensity, the intimacy (mutual confiding) and the reciprocal services which characterize the tie\u201d (as cited in Zigron and Bronstein, 2019, p. 130). Strong ties are referred to the relationships with close friends or family members (Zigron & Bronstein, 2019, p. 132), whilst weak ties are the relationships people form with individuals that are beyond their \u201cimmediate social network\u201d (2019, p. 130). <\/p>\n\n\n\n The \u201cintimacy and reciprocal services\u201d exchanged between members are restricted\nto the needs pertaining to the common health problem, and whilst these\nparticipatory networks tend to promote new online relationships\u2014weak ties\nrelationships (Zigron & Bronstein, 2019, pp. 130-131), family and friends\nwere often not part of the VC (Colineau & Paris, 2010, p. 142). Research\nhas evidenced that whilst family and friends (strong ties) can provide valuable\nsupport structures, chronic health sufferers may feel that they are unable to\nexpress their feelings to others who do not share the same illness, or, may experience\nthe \u201cwithdrawal\u201d of close friends and family members who are fatigued from supporting\nthem long-term (as cited in Johnston et al., 2013, p. 216). Weak ties are the\npeople that ultimately go on to provide support, often during times of crisis\nsuch as long-term illness, and when strong ties relationships are disrupted (Zigron\n& Bronstein, 2019, p. 130). Peers in OHCs are increasingly favoured because\nthey can still maintain a \u201ccomfortable emotional distance\u201d whilst offering\nsupport (Colineau & Paris, 2010, p. 151), strengthening the weak ties\nrelationship. OHCs are becoming a powerful instrument in managing chronic\nhealth conditions, and this is particularly significant when patients living\nwith a socially stigmatising and isolating illness do not receive the same\nlevel of empathy and support from society as other diseases, such as cancer\n(Zigron & Bronstein, 2019, p. 138). VHCs help peers cope with stigmatising\nhealth ailments by offering a less critical and more impartial place to source\nand obtain information and coping strategies (2019, p. 137). It is evident that\nOHCs significantly broaden and strengthen weak ties relationships, and participants\nderive manifold benefits from these socially mediated relationships (Zigron &\nBronstein, 2019, p. 138). <\/p>\n\n\n\n According to Zigron and Bronstein, numerous studies identify and corroborate\nfive key benefits of OHCs (as cited in Zigron & Bronstein, 2019, p. 131).\nFirstly, OHCs permit easy access and availability of information, particularly\nto those living in isolated locations, or who may be restricted to their homes.\nSecondly, OHCs help minimise socio-economic differences. Thirdly, in OHCs, the\nfear of rejection is reduced when members choose to either remain anonymous, or\ncontrol and partially disclose personal health information that they may\notherwise feel awkward doing. Fourthly, the relevance of the type of\ninformation offered in VCs, such as experiential information and coping\nmechanisms, help other members experiencing a similar condition to make\npositive lifestyle changes. Lastly, VCs facilitate social interactions among\nmembers, which helps alleviate feelings of anxiety and loneliness especially\namongst individuals suffering a stigmatising illness (as cited in Zigron &\nBronstein, 2019, p. 131). The potential of OHCs can be evidenced utilising the\nunique, open-sharing, data-rich site, PatientsLikeMe (PLM).<\/p>\n\n\n\n PLM is a social networking platform to more than six hundred thousand\npatients who have access to at least 2800 health conditions such as cancer,\nrheumatoid arthritis, fibromyalgia, and diabetes (https:\/\/www.patientslikeme.com\/).\nPLM provides tools to users to help self-track their health as they interact\nwith and share detailed real-world experiences, side-effects of medications and\noutcomes with other individuals of the same illness to help improve their lives\n(https:\/\/www.patientslikeme.com\/). Zigron and Bronstein (2019) argue that the\nweak ties relationships in VCs are, therefore, far more salient than the role\nof strong ties relationships (p. 132). This is because members in a VC do not\nbelong to the same social circle of friends and relatives, are not\ngeographically or physically constrained, and provide a much-needed point of\ncomparison and diversified experiential information which is not necessarily\navailable from a more intimate relationship (as cited in Zigron &\nBronstein, 2019, p. 132). Medical professionals and researchers have realised\nthe potential of OHCs such as PLM, as they harness Web 2.0 affordances to\naggregate data from consenting PLM patients to streamline or improve treatments\n(Bradley et al., 2016; Colineau & Paris, 2010), and to conduct further\nclinical trials and patient-driven research (Bradley et al., 2016; Heaton,\n2011). <\/p>\n\n\n\n Academic studies provide valuable insights into the beneficial impact of\nOHCs on people with chronic health challenges. A 2003 study conducted by Wright and Bell revealed\nthat when people write about their health problems and share personal\ninformation on OHCs, it can be therapeutic (Heaton, 2011; Zigron &\nBronstein, 2019). Heaton (2011) contends that a key coping\nstrategy of patients is to become extremely well-informed about their illness,\nfind ways to manage their daily lives and to be able to discuss their health\nknowledgeably with their physician (2011, p. 217). Interestingly, OHCs may enhance\nor even supplant traditional face-to-face patient support groups; members exchange\ntechnical information about new treatment options, engage in discussions about\ntheir lived experiences, as well as motivate one another (Heaton, 2011, p.\n217). Web 2.0 empowers individuals to make more informed choices by leveraging\nthe collective wisdom of OHC members\u2014trust and confidence are built as information\nin most communities are actively vetted and filtered for inaccuracies (Colineau\n& Paris, 2010, p. 149). Informed peers of OHCs also help clarify medical\njargon used by health professionals that may be confusing and difficult to\nunderstand (Johnston et al., 2013, p. \n226). In a peer-to-peer relationship, information is often communicated swiftly\n\u201cwithout borders\u201d, thus encouraging despairing patients to attempt a new\ntreatment predicated on the triumphant anecdotes of other OHC members (Colineau\n& Paris, 2010, p. 157). Web 2.0 technologies have enabled members of some\nOHCs to advocate for more obscure and largely unknown diseases, not only\namongst the VC, but also across the populace, and further still by campaigning\nfor reforms to government policies (Heaton, 2011, p. 218). The internet and digital technologies have indisputably enabled chronically\nill individuals to better manage their illnesses and improve medical outcomes, but\nthis is not without risk to their privacy.<\/p>\n\n\n\n Zhou (2018) proclaims that once information is posted online, it is in\nthe public domain and can have unintended consequences (p. 287). Posts in OHCs\nmay contain sensitive information such as an individual\u2019s personal contact details,\ndemographic data, financial status, therapy sessions, or treatment archives\u2014all\nof which can be easily accessed by anyone (Zhou, 2018, p. 288). Some patients in\none study perceived this risk as a small drawback that is counterbalanced by\nthe richness of their social interactions and the empathy people demonstrated\nin OHCs (Colineau & Paris, 2010, p. 155). Another study of OHCs in China validated\nthat privacy concerns and financial risks were frequently disregarded by\npatients for more valuable information and intangible psychological and social benefits\n(Zhou, 2018, p. 293). This was particularly evident when people were faced with\na long-term or life-threatening illness; therefore, disease severity directly impacted\npatients\u2019 decisions (Zhou, 2018, pp. 293-294). However, a surfeit of\ninformation and misinformation can disempower patients and contribute to a\nshift in the traditional doctor-patient dynamic (Johnston et al., 2013, p.\n215). <\/p>\n\n\n\n As patients become\nmore informed and proactive about their chronic health illnesses due to an\nabundance of specialist knowledge online, this can disrupt the power traditionally\nheld by the medical elites (Broom, 2009; Colineau & Paris, 2010; Fischer\n& Soyez, 2015; Johnston et al., 2013; Weinhold & Gastaldi, 2015). A study\nconducted by Broom illustrates patients\u2019 feelings of disempowerment when some physicians\ndisplayed antagonistic attitudes towards the informed patient in the medical\nencounter (Broom, 2009). Some professionals felt their power and authority as\nan expert threatened when treatment options and medications were challenged by\ninformed patients (Broom, 2009). Colineau and Paris (2010) assert that the\ndoctor-patient relationship is also perceived as a \u201cmore clinical one\u201d since most\nphysicians lack lived experience and are, therefore, unable to express empathy\ntowards the patient (pp. 156-157). Informed patients may also observe that\ntheir physicians are not fully cognisant of all the most current medical treatment\noptions, or, have dealt with many cases\nof that particular illness which could result in significant delays before a\ntreatment becomes available (2010, p. 157). Broom (2009) argues that even\nthough the majority of medical professionals are receptive to the vital shift\nin \u201cself-help culture\u201d (2009, p. 34), Weinhold and Gastaldi concede that it is\na slow process to effect change in the traditional patient-physician\nrelationship (2015, p. 194). Nonetheless, healthcare is \u201cshifting from\nphysician towards patient-centredness\u201d (2015, p. 186), and it is crucial for\npatients and medical professionals to enhance health processes and outcomes by\neffectively sharing information and engaging in unified decision-making (pp.\n186-187). <\/p>\n\n\n\n Managing a health condition is an emotionally challenging and daunting undertaking for any individual. A plethora of academic research validates that online health communities are becoming an increasingly powerful tool in managing chronic health ailments. Easy access to Web 2.0 technologies has enabled people to become more engaged in their health and well-being. Chronically ill individuals experiencing similar health challenges benefit immensely by sharing diverse information, experiential knowledge and personal success stories with acquaintances formed in OHCs. These new social bonds play a crucial role in helping to reduce social stigma and isolation and the need for social support and empathy have further strengthened these new weak tie relationships. However, research has evinced that patients sometimes privileged intangible psychosocial benefits received from the support systems in OHCs over privacy concerns and financial risks. Whilst Web 2.0 technologies have enabled people to take control of and better manage their chronic illnesses, this has inevitably contributed to a shift in the traditional power dynamics between patient and physician. By leveraging the collective wisdom of peers in OHCs, empowered individuals have disrupted traditional medical hierarchies and continue to challenge an antiquated model of healthcare. Health 2.0, however, is still relatively new and healthcare is slowly and continually reforming to become more patient-centred. OHCs possess the remarkable potential to change the course and speed of health research; therefore, further studies on OHCs are imperative. This can elucidate how patients involved in clinical trials and patient-driven research on social networking platforms such as PLM, are contributing to chronic health management and ameliorating healthcare in the process. <\/p>\n\n\n\n References<\/p>\n\n\n\n Aguiton,\nC., & Cardon, D. (2007). The strength of weak cooperation: An attempt to\nunderstand the meaning of web 2.0. Communications & Strategies<\/em>, 65<\/em>(1), 51-65.\nhttps:\/\/papers.ssrn.com\/sol3\/papers.cfm?abstract_id=1009070<\/p>\n\n\n\n Bradley,\nM., Braverman, J., Harrington, M., & Wicks, P. (2016). Patients\u2019\nmotivations and interest in research: characteristics of volunteers for\npatient-led projects on PatientsLikeMe. Research\nInvolvement and Engagement, 2<\/em>, 1-15. https:\/\/search-proquest-com.dbgw.lis.curtin.edu.au\/docview\/1856069636?rfr_id=info%3Axri%2Fsid%3Aprimo<\/p>\n\n\n\n Broom,\nA. (2009). The role and implications of the internet in healthcare delivery. In\nD. Oliver, C. Romm Livermore, & F. Sudweeks (Eds.), Self-service in the internet age: Expectations and experiences <\/em>(pp.\n19-36). Retrieved from\nhttps:\/\/link-springer-com.dbgw.lis.curtin.edu.au\/book\/10.1007%2F978-1-84800-207-4<\/p>\n\n\n\n Camerini,\nL., Diviani, N., & Tardini, S. (2010). Health virtual communities: is the self lost in the net? Social Semiotics, 20<\/em>(1), 87-102.\nhttps:\/\/www-tandfonline-com.dbgw.lis.curtin.edu.au\/doi\/abs\/10.1080\/10350330903507230<\/p>\n\n\n\n Colineau,\nN., & Paris. C. (2010). Talking about your health to strangers:\nunderstanding the use of social online networks by patients. New Review of Hypermedia and Multimedia, 16<\/em>(1-2),\n141-160.\nhttps:\/\/www-tandfonline-com.dbgw.lis.curtin.edu.au\/doi\/abs\/10.1080\/13614568.2010.496131<\/p>\n\n\n\n Fischer,\nS., & Soyez, K. (2015). Trick or treat: Assessing health 2.0 and its\nprospects for patients, providers and society. In S. Gurtner and K. Soyez\n(Eds.), Challenges and opportunities in\nHealth Care Management <\/em>(pp. 197-208).<\/em>\nRetrieved from\nhttps:\/\/link-springer-com.dbgw.lis.curtin.edu.au\/chapter\/10.1007\/978-3-319-12178-9_16 <\/p>\n\n\n\n Heaton,\nL. (2011). Internet and health communication. In M. Consalvo and C. Ess (Eds.),\nThe handbook of internet studies <\/em>(pp.\n212-231).<\/em> Retrieved from\nhttps:\/\/onlinelibrary-wiley-com.dbgw.lis.curtin.edu.au\/doi\/book\/10.1002\/9781444314861<\/p>\n\n\n\n Johnston,\nA. C., Worrell, J. L., Di Gangi, P. M., & Wasko, M. (2013). Online health\ncommunities: An assessment of the influence of participation on patient\nempowerment outcomes. Information\nTechnology & People, 26<\/em>(2), 213-235.\nhttps:\/\/www-emeraldinsight-com.dbgw.lis.curtin.edu.au\/doi\/abs\/10.1108\/ITP-02-2013-0040<\/p>\n\n\n\n Weinhold,\nI., & Gastaldi, L. (2015). From shared decision making to patient\nengagement in health care processes: The role of digital technologies. In S.\nGurtner & K. Soyez (Eds.), Challenges and opportunities in health care\nmanagement<\/em> (pp. 185-196). Retrieved from\nhttps:\/\/link-springer-com.dbgw.lis.curtin.edu.au\/chapter\/10.1007\/978-3-319-12178-9_15<\/p>\n\n\n\n Zhou,\nJ. (2018). Factors influencing people\u2019s personal information disclosure\nbehaviors in online health communities: A pilot study. Asia Pacific Journal of Public Health, 30<\/em>(3), 286-295.\nhttps:\/\/journals-sagepub-com.dbgw.lis.curtin.edu.au\/doi\/pdf\/10.1177\/1010539518754390<\/p>\n\n\n\n Zigron, S., & Bronstein, J. (2019). \u201cHelp is where you find it\u201d: The role of weak ties networks as sources of information and support in virtual health communities. Journal of the Association for Information Science and Technology, 70<\/em>(2), 130-139. https:\/\/onlinelibrary-wiley-com.dbgw.lis.curtin.edu.au\/doi\/epdf\/10.1002\/asi.24106<\/p>\n\n\n\n <\/p>\n\n\n\n Online Health Communities: Benefits,\nPrivacy Concerns and a Shift in the Traditional Patient-Physician Dynamic<\/a> by KBips is licensed under a Creative\nCommons Attribution-NonCommercial 4.0 International License<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":" Curtin University NET204 Abstract This paper discusses the growth and impact of Online Health Communities (OHCs) on the daily lives of people living with chronic health conditions. Drawing on research from diverse scholarly perspectives, this paper deliberates on the extent to which affordances of associated Web 2.0 technologies have enabled individuals to seek and share… Continue reading Online Health Communities: Benefits, Privacy Concerns and a Shift in the Traditional Patient-Physician Dynamic<\/span><\/a><\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[31,29,138,45,160,141,137,161,140,143,96,173,139,130],"class_list":["post-343","post","type-post","status-publish","format-standard","hentry","category-communities","tag-socialnetworks","tag-virtualcommunities","tag-chronichealth","tag-communities","tag-empowerment","tag-healthcare","tag-onlinehealthcommunities","tag-patientphysicianrelationship","tag-patientslikeme","tag-privacyconcerns","tag-socialsupport","tag-virtualhealthcommunities","tag-weakties","tag-web2-0"],"_links":{"self":[{"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/posts\/343","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/comments?post=343"}],"version-history":[{"count":9,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/posts\/343\/revisions"}],"predecessor-version":[{"id":405,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/posts\/343\/revisions\/405"}],"wp:attachment":[{"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/media?parent=343"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/categories?post=343"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/networkconference.netstudies.org\/2019Open\/wp-json\/wp\/v2\/tags?post=343"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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