Curtin University
NET204
Abstract
Keywords: Web 2.0, online health communities, virtual communities, chronic health, weak ties, privacy, patient-physician relationship, social support, empowerment, PatientsLikeMe, healthcare, social network
Online Health Communities: Benefits, Privacy Concerns and a Shift in the Traditional Patient-Physician Dynamic
Virtual Health Communities (VHCs) or Online Health Communities (OHCs) have grown at an unprecedented rate since the advent of the internet and more interactive, collaborative and participatory online technologies, known as Web 2.0 applications (Colineau & Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011; Johnston, Worrell, Di Gangi, & Wasko, 2013; Zhou, 2018; Zigron & Bronstein, 2019). As a result, social media and the affordances of associated Web 2.0 technologies are unquestionably transforming the way individuals progressively search for information and take control of their health, particularly those with chronic illnesses (Bradley, Braverman, Harrington, & Wicks, 2016; Fischer & Soyez, 2015). Accordingly, Web 2.0 technologies with healthcare-related content is termed: Health 2.0 (Fischer & Soyez, 2015; Zhou, 2018). Johnston, Worrell, Di Gangi, and Wasko (2013) contend that OHCs offer people access to unique resources irrespective of geographical boundaries, time, or privacy restrictions (p. 214). In Health 2.0, apomediation is the term used when people seek health information online and have removed intermediaries that have been traditionally used in the process of sourcing and accessing health information (Fischer & Soyez, 2015, p.199). Unsurprisingly, medical professionals are no longer the gatekeepers of medical knowledge; as intermediaries, they have been substituted or complemented by Web 2.0 technologies and peers in OHCs who now share and provide credible information (Fischer & Soyez, 2015, p. 199). As argued by Aguiton and Cardon (2007), Web 2.0 affordances can be characterised by the astounding upsurge of publicly social connections that are facilitated by communities on the internet, the expansion of contacts made, and the formation of a new kind of weak bond or relationship (Aguiton & Cardon, 2007, p. 55). This trend of “weak ties” relationships in communities continues to accelerate (2007, p. 61), particularly in OHCs such as PatientsLikeMe (PLM), highlighting the importance of these social relationships created in mediated spaces. While Web 2.0 platforms have enabled individuals to better manage their chronic illness and strengthen weak ties in OHCs, this is not without risk to their privacy and the disruption to the traditional patient-physician relationship.
A 2014 survey conducted by the Pew Research Institute in the United States revealed that 70% of respondents were more interested in health-related issues than any other topic on the internet (Zigron & Bronstein, 2019, p. 131). Several studies on OHCs have corroborated the assertion that people are no longer wholly dependent on medical professionals for health information and treatment decisions (Broom, 2009; Camerini, Diviani, & Tardini, 2010; Colineau & Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011; Johnston et al., 2013; Zigron & Bronstein, 2019). Furthermore, various academics claim that OHCs represent a key source for medical informational retrieval and support, particularly for chronically ill individuals (Bradley et al., 2016; Colineau & Paris, 2010; Fischer & Soyez, 2015; Heaton, 2011; Johnston et al., 2013; Zhou, 2018; Zigron & Bronstein, 2019). According to a 2013 Fox survey, more than 50% of American people with chronic illnesses actively managed blogs and engaged in discussions on OHCs (as cited in Zigron & Bronstein, 2019, p. 131). VHCs enable individuals with health challenges to participate in supportive communiqué with other people coping with similar medical issues that would otherwise be problematic or impossible to establish in the real world (Zigron & Bronstein, 2019, p. 130). PatientsLikeMe.com (PLM), is an example of a social networking platform in which “shared patient experiences contribute to improved health self-management and support clinical knowledge” (Fischer & Soyez, 2015, p. 197).
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—a sense of community (as cited in Zigron & Bronstein, 2019, p. 130). The strength of a tie is described by renowned sociologist, Mark Granovetter, “as the combination of the amount of time, the emotional intensity, the intimacy (mutual confiding) and the reciprocal services which characterize the tie” (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 “immediate social network” (2019, p. 130).
The “intimacy and reciprocal services” exchanged between members are restricted to the needs pertaining to the common health problem, and whilst these participatory networks tend to promote new online relationships—weak ties relationships (Zigron & Bronstein, 2019, pp. 130-131), family and friends were often not part of the VC (Colineau & Paris, 2010, p. 142). Research has evidenced that whilst family and friends (strong ties) can provide valuable support structures, chronic health sufferers may feel that they are unable to express their feelings to others who do not share the same illness, or, may experience the “withdrawal” of close friends and family members who are fatigued from supporting them long-term (as cited in Johnston et al., 2013, p. 216). Weak ties are the people that ultimately go on to provide support, often during times of crisis such as long-term illness, and when strong ties relationships are disrupted (Zigron & Bronstein, 2019, p. 130). Peers in OHCs are increasingly favoured because they can still maintain a “comfortable emotional distance” whilst offering support (Colineau & Paris, 2010, p. 151), strengthening the weak ties relationship. OHCs are becoming a powerful instrument in managing chronic health conditions, and this is particularly significant when patients living with a socially stigmatising and isolating illness do not receive the same level of empathy and support from society as other diseases, such as cancer (Zigron & Bronstein, 2019, p. 138). VHCs help peers cope with stigmatising health ailments by offering a less critical and more impartial place to source and obtain information and coping strategies (2019, p. 137). It is evident that OHCs significantly broaden and strengthen weak ties relationships, and participants derive manifold benefits from these socially mediated relationships (Zigron & Bronstein, 2019, p. 138).
According to Zigron and Bronstein, numerous studies identify and corroborate five key benefits of OHCs (as cited in Zigron & Bronstein, 2019, p. 131). Firstly, OHCs permit easy access and availability of information, particularly to those living in isolated locations, or who may be restricted to their homes. Secondly, OHCs help minimise socio-economic differences. Thirdly, in OHCs, the fear of rejection is reduced when members choose to either remain anonymous, or control and partially disclose personal health information that they may otherwise feel awkward doing. Fourthly, the relevance of the type of information offered in VCs, such as experiential information and coping mechanisms, help other members experiencing a similar condition to make positive lifestyle changes. Lastly, VCs facilitate social interactions among members, which helps alleviate feelings of anxiety and loneliness especially amongst individuals suffering a stigmatising illness (as cited in Zigron & Bronstein, 2019, p. 131). The potential of OHCs can be evidenced utilising the unique, open-sharing, data-rich site, PatientsLikeMe (PLM).
PLM is a social networking platform to more than six hundred thousand patients who have access to at least 2800 health conditions such as cancer, rheumatoid arthritis, fibromyalgia, and diabetes (https://www.patientslikeme.com/). PLM provides tools to users to help self-track their health as they interact with and share detailed real-world experiences, side-effects of medications and outcomes with other individuals of the same illness to help improve their lives (https://www.patientslikeme.com/). Zigron and Bronstein (2019) argue that the weak ties relationships in VCs are, therefore, far more salient than the role of strong ties relationships (p. 132). This is because members in a VC do not belong to the same social circle of friends and relatives, are not geographically or physically constrained, and provide a much-needed point of comparison and diversified experiential information which is not necessarily available from a more intimate relationship (as cited in Zigron & Bronstein, 2019, p. 132). Medical professionals and researchers have realised the potential of OHCs such as PLM, as they harness Web 2.0 affordances to aggregate data from consenting PLM patients to streamline or improve treatments (Bradley et al., 2016; Colineau & Paris, 2010), and to conduct further clinical trials and patient-driven research (Bradley et al., 2016; Heaton, 2011).
Academic studies provide valuable insights into the beneficial impact of OHCs on people with chronic health challenges. A 2003 study conducted by Wright and Bell revealed that when people write about their health problems and share personal information on OHCs, it can be therapeutic (Heaton, 2011; Zigron & Bronstein, 2019). Heaton (2011) contends that a key coping strategy of patients is to become extremely well-informed about their illness, find ways to manage their daily lives and to be able to discuss their health knowledgeably with their physician (2011, p. 217). Interestingly, OHCs may enhance or even supplant traditional face-to-face patient support groups; members exchange technical information about new treatment options, engage in discussions about their lived experiences, as well as motivate one another (Heaton, 2011, p. 217). Web 2.0 empowers individuals to make more informed choices by leveraging the collective wisdom of OHC members—trust and confidence are built as information in most communities are actively vetted and filtered for inaccuracies (Colineau & Paris, 2010, p. 149). Informed peers of OHCs also help clarify medical jargon used by health professionals that may be confusing and difficult to understand (Johnston et al., 2013, p. 226). In a peer-to-peer relationship, information is often communicated swiftly “without borders”, thus encouraging despairing patients to attempt a new treatment predicated on the triumphant anecdotes of other OHC members (Colineau & Paris, 2010, p. 157). Web 2.0 technologies have enabled members of some OHCs to advocate for more obscure and largely unknown diseases, not only amongst the VC, but also across the populace, and further still by campaigning for reforms to government policies (Heaton, 2011, p. 218). The internet and digital technologies have indisputably enabled chronically ill individuals to better manage their illnesses and improve medical outcomes, but this is not without risk to their privacy.
Zhou (2018) proclaims that once information is posted online, it is in the public domain and can have unintended consequences (p. 287). Posts in OHCs may contain sensitive information such as an individual’s personal contact details, demographic data, financial status, therapy sessions, or treatment archives—all of which can be easily accessed by anyone (Zhou, 2018, p. 288). Some patients in one study perceived this risk as a small drawback that is counterbalanced by the richness of their social interactions and the empathy people demonstrated in OHCs (Colineau & Paris, 2010, p. 155). Another study of OHCs in China validated that privacy concerns and financial risks were frequently disregarded by patients for more valuable information and intangible psychological and social benefits (Zhou, 2018, p. 293). This was particularly evident when people were faced with a long-term or life-threatening illness; therefore, disease severity directly impacted patients’ decisions (Zhou, 2018, pp. 293-294). However, a surfeit of information and misinformation can disempower patients and contribute to a shift in the traditional doctor-patient dynamic (Johnston et al., 2013, p. 215).
As patients become more informed and proactive about their chronic health illnesses due to an abundance of specialist knowledge online, this can disrupt the power traditionally held by the medical elites (Broom, 2009; Colineau & Paris, 2010; Fischer & Soyez, 2015; Johnston et al., 2013; Weinhold & Gastaldi, 2015). A study conducted by Broom illustrates patients’ feelings of disempowerment when some physicians displayed antagonistic attitudes towards the informed patient in the medical encounter (Broom, 2009). Some professionals felt their power and authority as an expert threatened when treatment options and medications were challenged by informed patients (Broom, 2009). Colineau and Paris (2010) assert that the doctor-patient relationship is also perceived as a “more clinical one” since most physicians lack lived experience and are, therefore, unable to express empathy towards the patient (pp. 156-157). Informed patients may also observe that their physicians are not fully cognisant of all the most current medical treatment options, or, have dealt with many cases of that particular illness which could result in significant delays before a treatment becomes available (2010, p. 157). Broom (2009) argues that even though the majority of medical professionals are receptive to the vital shift in “self-help culture” (2009, p. 34), Weinhold and Gastaldi concede that it is a slow process to effect change in the traditional patient-physician relationship (2015, p. 194). Nonetheless, healthcare is “shifting from physician towards patient-centredness” (2015, p. 186), and it is crucial for patients and medical professionals to enhance health processes and outcomes by effectively sharing information and engaging in unified decision-making (pp. 186-187).
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.
References
Aguiton, C., & Cardon, D. (2007). The strength of weak cooperation: An attempt to understand the meaning of web 2.0. Communications & Strategies, 65(1), 51-65. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1009070
Bradley, M., Braverman, J., Harrington, M., & Wicks, P. (2016). Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe. Research Involvement and Engagement, 2, 1-15. https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1856069636?rfr_id=info%3Axri%2Fsid%3Aprimo
Broom, A. (2009). The role and implications of the internet in healthcare delivery. In D. Oliver, C. Romm Livermore, & F. Sudweeks (Eds.), Self-service in the internet age: Expectations and experiences (pp. 19-36). Retrieved from https://link-springer-com.dbgw.lis.curtin.edu.au/book/10.1007%2F978-1-84800-207-4
Camerini, L., Diviani, N., & Tardini, S. (2010). Health virtual communities: is the self lost in the net? Social Semiotics, 20(1), 87-102. https://www-tandfonline-com.dbgw.lis.curtin.edu.au/doi/abs/10.1080/10350330903507230
Colineau, N., & Paris. C. (2010). Talking about your health to strangers: understanding the use of social online networks by patients. New Review of Hypermedia and Multimedia, 16(1-2), 141-160. https://www-tandfonline-com.dbgw.lis.curtin.edu.au/doi/abs/10.1080/13614568.2010.496131
Fischer, S., & Soyez, K. (2015). Trick or treat: Assessing health 2.0 and its prospects for patients, providers and society. In S. Gurtner and K. Soyez (Eds.), Challenges and opportunities in Health Care Management (pp. 197-208). Retrieved from https://link-springer-com.dbgw.lis.curtin.edu.au/chapter/10.1007/978-3-319-12178-9_16
Heaton, L. (2011). Internet and health communication. In M. Consalvo and C. Ess (Eds.), The handbook of internet studies (pp. 212-231). Retrieved from https://onlinelibrary-wiley-com.dbgw.lis.curtin.edu.au/doi/book/10.1002/9781444314861
Johnston, A. C., Worrell, J. L., Di Gangi, P. M., & Wasko, M. (2013). Online health communities: An assessment of the influence of participation on patient empowerment outcomes. Information Technology & People, 26(2), 213-235. https://www-emeraldinsight-com.dbgw.lis.curtin.edu.au/doi/abs/10.1108/ITP-02-2013-0040
Weinhold, I., & Gastaldi, L. (2015). From shared decision making to patient engagement in health care processes: The role of digital technologies. In S. Gurtner & K. Soyez (Eds.), Challenges and opportunities in health care management (pp. 185-196). Retrieved from https://link-springer-com.dbgw.lis.curtin.edu.au/chapter/10.1007/978-3-319-12178-9_15
Zhou, J. (2018). Factors influencing people’s personal information disclosure behaviors in online health communities: A pilot study. Asia Pacific Journal of Public Health, 30(3), 286-295. https://journals-sagepub-com.dbgw.lis.curtin.edu.au/doi/pdf/10.1177/1010539518754390
Zigron, S., & Bronstein, J. (2019). “Help is where you find it”: 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(2), 130-139. https://onlinelibrary-wiley-com.dbgw.lis.curtin.edu.au/doi/epdf/10.1002/asi.24106
Online Health Communities: Benefits, Privacy Concerns and a Shift in the Traditional Patient-Physician Dynamic by KBips is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Great paper Kogie. As I was reading it I was noticing a lot of parallels with my subject area even though it may not seem immediately obvious. The biggest parallel I noticed was the changing power dynamics that Web 2.0 technologies have created. Where your users (patients) are disrupting the patient / doctor power dynamic through increased knowledge, in my paper, I look at how sex workers are disrupting the pimp (or client) / sex worker power dynamic by using Web 2.0 controlling their identity and the work they accept. Another parallel I observed was the use of Web 2.0 technologies for find support from communities made up of weak ties. Both people with chronic health issues and sex workers may struggle to talk to people in their stronger networks (as you mention) as it can be difficult for others to understand their experiences.
I agree with what you say about Web 2.0 technologies helping to reduce stigma, and while there are privacy risks associated with using Web 2.0 technologies, it seems that the benefits they afford to stigmatised and marginalised groups is invaluable to these groups.
Hi Emily
Many thanks for reading and responding to my paper. Yes, I agree that despite our dissimilar subject matter, the parallels you have drawn are striking: the changing power dynamics and the weak ties relationships created in virtual communities that provide invaluable support to its members. I think that irrespective of the topic, or the online community that we discuss, it is abundantly clear that Web 2.0 and associated digital technologies have impacted the lives of many people from diverse backgrounds in communities of shared interest. In my paper, I have argued that Web 2.0 has disrupted the power dynamics between patient and physician, and interestingly, current research has revealed that OHCs can also benefit physicians, not just patients. Audrain-Pontevia & Menvielle (2018) argue that OHCs can be instrumental in creating, maintaining and reinforcing the patient-physician relationship (p. 61). Thank you for your response again, Emily; it is much appreciated.
Audrain-Pontevia, A., & Menvielle, L. (2018). EFFECTS OF INTERPERSONAL TRUST AMONG USERS OF ONLINE HEALTH COMMUNITIES ON PATIENT TRUST IN AND SATISFACTION WITH THEIR PHYSICIAN. International Journal of Technology Assessment in Health Care, 34(1), 56-62. https://www-cambridge-org.dbgw.lis.curtin.edu.au/core/services/aop-cambridge-core/content/view/F39406FE8EB92FB7B20D8D3DE2F231B7/S0266462317004433a.pdf/effects_of_interpersonal_trust_among_users_of_online_health_communities_on_patient_trust_in_and_satisfaction_with_their_physician.pdf
This is an interesting topic as I’m not that familiar with VHC/OHCs as I am with other areas of the web. I did have a question about validity of information though. As we’ve seen in the past the web can spread misinformation quite rapidly and I am wondering whether this is a problem within these communities too with alternative medicine and the like?
Also, I liked how you approached the topic of animosity from doctors that find out their patients are doing their own research. It wasn’t too long ago I overheard someone say something negative about someone else who had looked into their own illness, there was an air of disbelief that it could be done but like anything it all depends on where you get your information from and whether you’ve fact checked it yourself and not just believing the first thing you read.
Finally, to do with this quote:
> A 2014 survey conducted by the Pew Research Institute in the United States revealed that 70% of respondents were more interested in health-related issues than any other topic on the internet (Zigron & Bronstein, 2019, p. 131).
I looked more into because it seemed a bit inflated, I was wondering who they surveyed to get such a high result and found that this is not entirely accurate but I can see how you came to that conclusion because the reference you cite does claim that however looking at the announcement from the Pew Research Centre they’re saying that their survey indicated that over 70% of users had searched for health information at any point, not that it is their main priority while online.
Here’s the link to the Pew announcement: https://www.pewresearch.org/fact-tank/2014/01/15/the-social-life-of-health-information/
Otherwise it was a good read, thanks KB!
Hi J
Many thanks for reading and commenting on my paper; it is much appreciated.
Misinformation can be and is a problem in some OHCs; however, as mentioned in my paper, this can quickly be remedied. Colineau and Paris (2010) argue that knowledgeable peers within the virtual community actively vet and filter information for inaccuracies and misinformation (p. 157). Alternative medicine can sometimes be an issue; however, peers are quick to dismiss claims unless it is affirmed with research and experience. Furthermore, I personally find that using more reputable sources such as PatientsLikeMe, WebMD, HealthBoards and MedHelp can be very satisfying as this helps eliminate issues of misinformation etc.
From my personal experience, I can relate to feeling disempowered. I have a fairly extensive knowledge of my chronic health condition, but I needed professional advice to know more about other treatment options. However, this particular doctor seemed insistent on prescribing medication even after I mentioned that I am prone to the side-effects of medication. I was taken aback when she had become agitated and seemed borderline hostile towards me. Needless to say, that was my one and only visit to that particular practice and I had made a complaint.
On the other hand, I have heard of and witnessed some doctors who use the internet to seek more current information, particularly on new treatments etc., (this includes my current GP). Broom (2009) and Weinhold and Gastaldi (2015) argue that whilst some medical professionals can be resistant to changing times with technology and more informed patients, others are more receptive and work with the patient to help make unified decisions about their treatment processes.
Many thanks for the link to the Pew Research article. The article reveals that “our latest national survey on the topic finds that seven-in-ten (72%) adult internet users say they have searched online for information about a range of health issues, the most popular being specific diseases and treatments” (https://www.pewresearch.org/fact-tank/2014/01/15/the-social-life-of-health-information/).
According to Zigron and Bronstein (2019), the statistic was dependant on the question posed in the survey. In the 2014 Pew Research survey, more than 70% of the respondents surveyed via email, phone and the internet, acknowledged that healthcare-related content was of more interest to them online, in comparison to the six of the other topics presented to them in that survey, namely “politics, religion, sports, business, science, and technology” (Zigron & Bronstein, 2019, p. 131).
Doctors remain the main source of health information and after the initial shock of a chronic illness diagnosis, people often seek more information about their health condition online, to find ways to take control of and better manage their lives, and to connect with others experiencing similar illnesses who understand what they are going through.
Many thanks once again for your comments J.
Colineau, N., & Paris. C. (2010). Talking about your health to strangers: understanding the use of social online networks by patients. New Review of Hypermedia and Multimedia, 16(1-2), 141-160. https://www-tandfonline-com.dbgw.lis.curtin.edu.au/doi/abs/10.1080/13614568.2010.496131
Weinhold, I., & Gastaldi, L. (2015). From shared decision making to patient engagement in health care processes: The role of digital technologies. In S. Gurtner & K. Soyez (Eds.), Challenges and opportunities in health care management (pp. 185-196). Retrieved from https://link-springer-com.dbgw.lis.curtin.edu.au/chapter/10.1007/978-3-319-12178-9_15
Zigron, S., & Bronstein, J. (2019). “Help is where you find it”: 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(2), 130-139. https://onlinelibrary-wiley-com.dbgw.lis.curtin.edu.au/doi/epdf/10.1002/asi.24106
> “the statistic was dependant on the question posed in the survey … acknowledged that healthcare-related content was of more interest to them online, in comparison to the six of the other topics presented to them in that survey, namely “politics, religion, sports, business, science, and technology” ”
That was my first thought when I saw the statistic, I wanted to know how they phrased the question and how they chose the participants because the number just seemed a tad high.
Thank you for clearing that up!
Hi K
I was so interested in reading your article since I first saw your thesis idea. I have a few chronic illnesses, ankylosing spondylitis and fibromyalgia being at the forefront. My daughter also has an unrelated chronic condition. Our house is built of heat packs!
I had never heard of Patients Like Me until I read your paper, despite being very active in the Spoonie community (https://patientsrising.org/what-is-spoonie/). I registered just past your abstract and I am looking forward to meeting some of the other 1467 people with my disease!
Something that resonated with me was this statement:
Research has evidenced that whilst family and friends (strong ties) can provide valuable support structures, chronic health sufferers may feel that they are unable to express their feelings to others who do not share the same illness, or, may experience the “withdrawal” of close friends and family members who are fatigued from supporting them long-term (as cited in Johnston et al., 2013, p. 216).
Chronic illness and chronic pain are so isolating – and while people do try their best they don’t really quite understand quite like the online community. I write about it in my blog here kickinghoopsandshootinggoals.com/2018/10/04/side-selfies-and-word-porn/
You will notice though that I try to keep everything a bit fun. This is because I find the online communities can be a very negative space, and rightly so. In saying that I’m looking forward to writing my PLM bio and meeting some fellow spoonies
Cheers
MJ
Greetings fellow spoonie!
Thank you for reading my paper and I am so glad that this has inspired your new membership to PatientsLikeMe; good luck interacting with your new community members.
Writing about chronic illnesses has been especially therapeutic for me. This is something that I have identified with for more than a decade, when in my early thirties. I was feeling quite isolated at times and would sometimes find myself getting moody. I have arthritis, amongst other health conditions, but it was not until I saw a rheumatologist about four years ago, that I was diagnosed with fibromyalgia. It can be challenging to explain the level of pain I experience to someone without the condition, as this is an invisible illness. Many people find it hard to understand that I have a chronic health condition in the first place since I look quite healthy on the outside—that is until I have a flare-up. Whilst most days can be fairly good, I have days when something like brushing my teeth, holding a mug, or preparing a meal becomes extremely difficult due to tender fingers and joints, and sciatica impedes my mobility and impacts mundane household chores. Music, meditation, photography and gentle exercises continue to be my key coping mechanisms. I am incredibly appreciative that I have a supportive husband and three caring children.
Unfortunately, this has been particularly problematic with my closest family members (my strong ties), therefore, in order to find people with the same condition who could understand my everyday lived experiences, I started to seek more information and support in virtual health communities and blogs. The weak ties in some OHCs have provided valuable psychosocial benefits because coping with a chronic health condition can be incredibly challenging, as you would understand. I have had to cut back on the things that I love doing like gardening and baking, but recently becoming a volunteer at an aged-care facility has been so gratifying; it makes me appreciate my life that much more.
Start writing your PLM bio fellow spoonie, and I am sure to read all about your experiences in your blog! However, I am curious to know how your chronic health ailment impacts your life and what coping mechanisms you have found that works well for you, MJ?
Regards
KB
Hey KB
Invisible illness is the worst. I am still quite high functioning but I have to push myself as I am single with a mortgage, and a daughter with expensive school fees and growing feet. There is also a chance that my mobility will be diminished over time (I have previously used walking aids, wheelchairs and mobility scooters), that’s the reasoning behind study. The more opportunity I have for freelance the better for me!
I cope mostly because I have excellent medical care. My rheumatologist, GP, psychologist all work together. I noted in your paper “As patients become more informed and proactive about their chronic health illnesses due to an abundance of specialist knowledge online, this can disrupt the power traditionally held by the medical elites (Broom, 2009; Colineau & Paris, 2010; Fischer & Soyez, 2015; Johnston et al., 2013; Weinhold & Gastaldi, 2015)”. I don’t find this has happened in my case at all, however it has taken years to get to a place where I have all these amazing Dr’s. They are all relatively young, so their training is up to date and they may possibly be more interested in current research and sharing of ideas. As an example diet is something touted as a cure-all for AS, my rheumatologist will dismiss this as studies aren’t conclusive but completely backs acupuncture and yoga because research has proven it. On that note yoga has always been good for me, the hotter the better. In saying that it’s been a long time since I have been on the mat.
One thing about the Internet and chronic or invisible illness is that compared to some people on an international platform, we do have amazing healthcare in place. Interweb friends from the US live I poverty, in India the drug that costs me $36 here a month is well over $2000 AUS. I think that as Australians comparing our stories on a global level is bound to give us a sense of gratitude, (and at the same time guilt). I have a good personal support network. My daughter is amazing. In a flare, she will cook and clean and generally help me out. My parents will do shopping if I need it. Work is flexible around my many appointments and procedures. I have a boyfriend who is not only supportive but is planning for a future where my mobility needs are always forefront in his mind. Gratitude for all of these things certainly helps.
As does all the medication!
Cheers
MJ
Hi MJ
Thank you for the additional feedback; it is much appreciated.
It’s great to hear that you are well-supported by a collaborative medical team and your close ties. The disparity in the cost of medication is almost beyond belief. This raises serious ethical concerns with major Pharma; the end goal of most pharmaceutical companies are not aligned with the patient.
Much like yourself, I am studying this degree because it affords me the opportunity of flexibility.
Many thanks for your comments, MJ
Hi MJ
I think that this current research is interesting and wanted to share it with you.
A recent academic study reveals that people with fibromyalgia may also have a co-morbid condition – ADHD.
https://www.everydayhealth.com/fibromyalgia/people-with-fibromyalgia-may-also-have-adhd-study-finds/
Link to the study
https://academic.oup.com/painmedicine/article/19/9/1825/4584482
Links to 2 apps that can help track your pain
https://fibromapp.com/
http://chronicpaintracker.com/
I hope this can be of help!
Kind regards
KB
Hello Kogie
I agree with you the medical professionals are not the gatekeepers medical knowledge since Web2.0 has opened up avenues for patients to have a real say regarding their health issues. Social Media Communities have evolved for many patients with the same health issue, providing support and friendship with people who understand the difficulties of serious illness. People can check symptoms or research their medications online allowing for the patient to ask questions of their doctor associated with either symptoms or medication. I believe the advent of Web2.0 keeps the medical practitioner up-to-date in their field of medicine. Years ago a patient dare not question their doctor and assumed everything they were told was correct, thankfully this has now changed. Research information on medical matters can be read by anyone who is interested and that can only be a good outcome.
Hi Robin
Many thanks for your response. Whilst Web 2.0 technologies have enabled the chronically-ill individual to make more informed decisions on their health and treatment processes, as you have noted, this has also permitted the medical professional to keep abreast of the very latest in research in their field. Furthermore, researchers and clinicians acknowledge the potential of OHCs such as PatientsLikeMe. As they aggregate information such as side-effects of medications from patients, partnering companies learn more about patients priorities about new treatments and therapies which can then result in patient-driven research. Due to the impact of Web 2.0 technologies, healthcare is evolving and becoming more patient-centred.
Bradley, M., Braverman, J., Harrington, M., & Wicks, P. (2016). Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe. Research Involvement and Engagement, 2, 1-15. https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1856069636?rfr_id=info%3Axri%2Fsid%3Aprimo
Thank you for an interesting paper, KP. Very similar to mine in that we have both discovered that web.20 technologies have allowed cancer patients and those with chronic illnesses to connect with others in the same or similar situations and gain valuable knowledge about their conditions. They can also discuss symptoms, treatments and medications with others who understand and can relate to the same problems, albeit through weak ties. I also found that although strong ties, family and friends, can offer much support they are not in the position to really understand exactly what the patient is feeling, both symptomatically and emotionally. From my research I found that many people when first diagnosed with cancer or any other disease which affects a person’s life permanently, rarely can remember everything that is said at their doctors appointment so need somewhere to go where they can find out the meaning of certain medical terminology and fully understand how they can progress from that point (Harkin, Beaver, Dey & Choong, 2017).
Harkin, L., Beaver, K., Dey, P., & Choong, K. (2017). Navigating cancer using online
communities: a grounded theory of survivor and family experiences. Journal of Cancer
Survivorship, 2017(11), 658-669. doi:10.1007/s11764-017-0616-1
Hi J
Thank you for reading and commenting on my paper; it is much appreciated.
As you have noted, the similarities in our respective papers are evident: weak ties relationships (Aguiton & Cardon, 2007) provide significant informational and psychosocial support to health-challenged people; something that cancer patients identify with. This is particularly salient when dealing with the often unexpected harsh realities of a long-term illness that will impact not only our physical wellbeing but our mental state as well.
As a chronic health sufferer, researching and writing this paper has been incredibly therapeutic for me as a key coping strategy (as cited in Johnston et al., 2013). Fibromyalgia affects at least 10 million Americans and about 6 per cent of the global population in dissimilar ways, is not gender specific and can impact people from all ethnicities. Yet, fibromyalgia is often misunderstood and disregarded by many. Being better informed about this chronic health condition will help debunk many myths (https://www.everydayhealth.com/fibromyalgia/guide/).
As you agree, family members can and do provide valuable support structures, but they often have difficulty in relating to an illness that they themselves do not have first-hand experience with. Managing long-term illness can be daunting and because fibromyalgia impacts my mental health too, I sought informational and psychosocial support from people in OHCs (weak ties) who personally understood what I was experiencing.
Whilst I agree that sometimes navigating these online communities can be overwhelming and do pose privacy concerns, I also see the immense benefits that they provide. Web 2.0 technologies have enabled many chronically ill individuals (much like myself) to take control of and better manage their condition. By leveraging the collective wisdom of peers in OHCs, we can make more informed decisions on our health and treatment processes, something that we were unable to do previously. As a result, social media and Web 2.0 platforms such as PatientsLikeMe are reshaping healthcare (Bradley, Braverman, Harrington & Wicks, 2016; Weinhold & Gastaldi, 2015).
Many thanks for your comments again, J!
Aguiton, C., & Cardon, D. (2007). The strength of weak cooperation: An attempt to understand the meaning of web 2.0. Communications & Strategies, 65(1), 51-65. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1009070
Bradley, M., Braverman, J., Harrington, M., & Wicks, P. (2016). Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe. Research Involvement and Engagement, 2, 1-15. https://search-proquest-com.dbgw.lis.curtin.edu.au/docview/1856069636?rfr_id=info%3Axri%2Fsid%3Aprimo
Johnston, A. C., Worrell, J. L., Di Gangi, P. M., & Wasko, M. (2013). Online health communities: An assessment of the influence of participation on patient empowerment outcomes. Information Technology & People, 26(2), 213-235. https://www-emeraldinsight-com.dbgw.lis.curtin.edu.au/doi/abs/10.1108/ITP-02-2013-0040
Weinhold, I., & Gastaldi, L. (2015). From shared decision making to patient engagement in health care processes: The role of digital technologies. In S. Gurtner & K. Soyez (Eds.), Challenges and opportunities in health care management (pp. 185-196). Retrieved from https://link-springer-com.dbgw.lis.curtin.edu.au/chapter/10.1007/978-3-319-12178-9_15
Thank you to all in this discussion and Kogie your paper was excellently written. I jotted a couple of notes down as I went along which I just thought I would throw out there.
The way you discussed just above the importance of OHC’s for the medical profession to use is really interesting and great to see that this is now becoming more of a collective and community for sharing of information across all the boundaries. Physicians in themselves would utilise the internet and online communities to discuss conditions, treatments and medications amongst their peers as well. As you say the balance of power is becoming more patient-centric and although I don’t have any evidence to support this yet, my assumption would be that the medical profession is doing a lot to also face into the the changes afforded by Web 2.0 to spread and share information more readily so they are themselves better informed and supportive of their patients. MJ, I think you touched on this with regard to your GP’s.
For me, I guess what is more worrying is not so much the supportive communities that exist but the Dr Google misinformation that permeates out there and also the reliance that the general public have on what they read online, there are a couple of articles that I found which although are not peer reviewed show that the public may be losing trust in physicians as they research more online or that they need the online answer to actually validate the healthcare professional!
https://www.forbes.com/sites/johnnosta/2017/05/08/the-internet-is-making-us-lose-trust-in-our-doctors/#30fc076a65fa
https://www.thedailybeast.com/why-you-trust-the-internet-more-than-your-doctor
https://www.nytimes.com/2018/01/23/upshot/do-you-trust-the-medical-profession.html
I do think that it is concerning that we are becoming so distrustful of those we are meant to trust, and where this might be coming from? Could it be the stories we hear that sensationalise the ‘wrong doctor’ and the ‘internet saved my life’ scenario. I am absolutely not trying to dismiss some great stories and sources of medical treatment that have actually achieved this but the more that this is spread via social media the more we are seeing this level of distrust in our medical profession.
We only have to look at the anti-vaccine movement which @DavidPoiner writes about in his paper and some of the discussion around that to show that the spread of fake news, misinformation, echo chambers and the power of how disinformation is spread can really have a very detrimental and in fact seriously dangerous affect on our communities that we live in.
That said, I was really touched by your’s and MJ’s openness and the positivity that you have and the way these online forums and communities have helped you. I think given some of the more negative stories we hear about online and social media it is great to see online communities also being the force for good.
Thanks again and look forward to hearing more on this discussion.
Hi Stephanie
Many thanks for your kind words and feedback on my paper; it is much appreciated. Your comments and the links to the articles that you have provided have given me lots to ruminate about.
I will address the comment regarding health professionals in the first of two responses.
Clinicians are certainly utilising Web 2.0 technologies as a means of professional communication with each other. This enables crowdsourcing of information and feedback to better inform their decisions on patientcare; however, this practice has yet to be fully embraced as argued by Booth, Strudwick and Fraser (2017). Due to technological advances, patients are increasingly evidencing a trend towards self-care by utilising built-in tools on social networking sites such as PatientsLikeMe. Medical professionals are realising that their traditional roles and responsibilities may also need to evolve in the face of patients changing behaviours enabled by networked technologies (Booth et al., 2017). It is interesting to note that with the increasing number of millennials entering leadership roles within healthcare and given their familiarity with social media, millennials now have the opportunity to fully leverage and expand the use of associated Web 2.0 technologies in healthcare, which is most likely to “become more of the norm, rather than exception” (Booth et al., 2017, p. 140). Furthermore, as argued by Broom (2009), and Booth et al., (2017), almost a decade later there is still limited receptiveness towards social media in medical milieus to officially use these technological innovations in their evolving roles. The perceived challenges to this, as contended by Booth et al (2017), may be a combination of “a lack of understanding from senior leadership, security implications, legal considerations, and dated technology prohibition policies” (p. 140). However, Booth et al posit that millennials as ‘emerging leaders’ can significantly reshape the healthcare landscape by “facilitating the deeper infusion of social media into all elements of healthcare” (2017, p. 140).
Thank you, Stephanie, for your positive feedback and engaging commentary on this topic. As mentioned earlier, I will address patients’ loss of trust with their clinicians and the healthcare system in my 2nd response.
Booth, R. G., Strudwick, G., & Fraser, R. (2017). The transformative power of social media: Considerations for practice and emerging leaders. Healthcare Management Forum, 30(3), 138–141. https://journals-sagepub-com.dbgw.lis.curtin.edu.au/doi/pdf/10.1177/0840470417693017
Thanks Kogie, for responding, I look forward to your other thoughts. In reading your response, the next generation of leaders in the healthcare system will certainly be more open and enthusiastic about the merits of online sharing and community.
I wonder if the fear at the moment is of security of information, or the digital shadow that they worry about leaving, once a professional has said or shared something it is permanent and they can forever be quoted on or exposed to these theories years later. The skepticism of not only the benefits of online collaboration but also fear of repercussions might be what is holding them back.
Hi Stephanie
Apologies for the delay in my 2nd response to the declining trust in the doctor-patient relationship, and for an extremely long post.
The notion of seeking information or relying on ‘Dr Google’ has become routine for many individuals. And the ubiquity of general health information is mind-boggling. Whilst there are many benefits to easy access to health information online, some of the many pitfalls of doing so are information overload and disinformation that impacts our decision-making.
Unfortunately, the link that you sent to me J, for the study referenced in the Forbes article no longer exits. Nonetheless, the study referenced suggested that ‘prior exposure to information can ‘prime’ a parent to have a unique bias. This bias can impact the trust that has been established with a physician and even change the care pathway’.
It is unquestionable that the internet has transformed the dynamic of general health information. By researching a particular health concern, we are empowering ourselves about a topic that we are usually reliant on from a medical professional. Whilst patients may Google health information, they also need to be cognisant of the reality that this should be discussed with a medical professional because not all information sourced online is factual. When we have a better understanding of the health issue, only then can we ask more pertinent questions at the medical encounter. Physicians can use this as an opportunity to re-establish trust with the patient by listening to their concerns and providing reputable online sources for health information, such as government websites and OHCs. Audrain-Pontevia and Menviell (2018) argue that OHCs can build trust and satisfaction between patient-doctor, and can, therefore, be used as an effective tool to augment the patient-doctor relationship.
J, I do agree with your comment that ‘the spread of fake news, misinformation, echo chambers and the power of how disinformation is spread can really have a very detrimental and in fact seriously dangerous effect on our communities that we live in’.
I do apologise in advance if any of the information regarding immunisation provided here overlaps with those that appear in David Poiners paper, and or in the paper’s comments section, as I have not perused that.
Research mapping the online debate of vaccines conducted in the US in 2016, evidenced that the majority of the re-tweets were ‘highly automated’, and appeared to originate from bots. Further research conducted in 2018 ‘revealed that some of those accounts belonged to the same Russian trolls that influenced the 2016 U.S. presidential election. Those now-suspended accounts tweeted both pro- and anti-vaccine messages to stoke discord’ (https://theconversation.com/anti-vaxxers-appear-to-be-losing-ground-in-the-online-vaccine-debate-114406) .
Furthermore, ‘On the anti-vax side, one account dominates all the others: @LotusOak, which gave as its full name “Vira Burnayeva.” That account was suspended by Twitter in late 2018 or early 2019. Interestingly, another account @ViraBurnayeva (full name “LotusOak”) that posts similar anti-vax misinformation and propaganda is currently among the most influential anti-vax nodes. The names suggest this account is controlled by the same source, illustrating how easy it can be to circumvent social media companies’ efforts to curb vaccine misinformation’.
Doctors are, therefore, instrumental in providing parents with factual information, which can be sourced via campaigns such as the ‘New childhood immunisation programme’ (https://ama.com.au/gp-network-news/new-childhood-immunisation-education-campaign) and can re-establish trust with the patient. And despite their limited time with the patient in the medical encounter, physicians can offer appropriate guidance and direction to either confirm or disconfirm information widely spread on social media, such as the safety and reliability of childhood immunisations (https://beta.health.gov.au/news-and-events/news/get-the-facts-launch-of-phase-3-of-the-childhood-immunisation-education-campaign).
I am unsure if you have read this CNN article about an American teenager, 18-year-old Ethan Lindenberger, who challenged his mother to become vaccinated and appeals for anti-vaccine misinformation to stop (https://edition.cnn.com/2019/03/05/health/vaccines-measles-senate-hearing/). The message is clear—education is Key!
An article that appeared in the Guardian last Friday, claims that ‘anti-vaccination messages spread by health practitioners could be particularly influential and harmful’ and those ‘health professionals who spread anti-vaccination messages will be disciplined’. There were concerns that some health practitioners, including doctors, nurses and chiropractors, were promoting anti-vaccination views on social media or in their practices (https://www.theguardian.com/australia-news/2019/may/10/health-professionals-spreading-anti-vaxx-messages-will-be-disciplined).
In another article, ‘Kathie Potts, whose five-year-old daughter Annabelle died of brain cancer earlier this year, said no parent should ever be forced to find treatment overseas’. The head Professor of Australian Health and Research Alliance, Helena Teede, said ‘while Australia had a world-class health system it was fragmented and inefficient due to state and federal jurisdictions, ethics and regulatory frameworks’. The article states that ‘An alliance of the nation’s leading doctors, academics and research scientists is calling for a new “one front door” platform to allow Australian patients to access international cutting-edge medical trials’ (https://www.perthnow.com.au/news/nsw/aussie-doctors-say-no-sick-child-should-have-to-go-overseas-for-drug-trials-ng-ff2bb85b3cdd63f0cd24c00e13809527.amp). Another great reason for patients to re-establish trust with healthcare in Australia.
Thank you, J, for the stimulating comments! I have much more to say on trust in the patient-doctor relationship, but this post is already way too long!
Thank you so much for taking the time to research and come back to this with a such a great response and so well thought out.
I think the idea that we might have the opportunity to research before sitting in a doctors surgery is a good thing, but as you rightly suggest, it is for an ability to further the discussion with the physician, and not to distrust them. I wonder however if there is still some animosity held by physicians should people attempt to do this, I’m sure for many if you started saying “well I’ve done some research online…” eyebrows would go up and eyeballs would roll!
Nevertheless, this should not stop anyone from informing themselves either.
We discussed in David’s paper on trolling, bots, Russia’s influence etc. on social media and online forums in relation to the anti and pro vax movement. It’s sadly something we are having to live with and although I’m really shocked by it, at least I am aware, sadly so many civilians are not and therefore not immune to its influence. The tech companies it appears are just not able to keep up with all this.
With regards to your last point, as I am not an Australian I am still struggling in some ways to come to terms with the laws and distinctions between federal and state and the fact that there are some very big differences between jurisdictions. Although we do have the same issue in the UK it is less to do with separate states an d generally more of what they call a ‘postcode’ lottery which is not just a healthcare issue but many other things too. And yes you do have the same here depending on where you live in a state even. You are right it shouldn’t be different for where you live but there is more than the internet at play here to try and fix these issues.
Thank you again for a fantastic discussion and paper, I have learnt a lot reading this.
cheers
Steph