Communities and Social Media

Cancer patients are ahead of cancer health care providers in healthcare social media.

Introduction

Cancer affects many Australians, who are increasingly participating in online virtual communities. While Australians with cancer use social media, particularly Facebook, in record numbers, the uptake of social media professionally by health professionals and health providers has been slower.

The two different communities  (cancer patients and health care providers) are active in different ways, for different purposes, and on different platforms.

Patients with cancer and their carers use social media for information and support. The information they receive from health professionals sometimes does not meet their needs and can be hard to remember in the swirl of emotions that accompanies a diagnosis of cancer.

Health professionals and health care organisations predominantly use social media for information aggregation and networking. Health professionals and health care organisations are ambivalent about the utility of social media. They use social media, commonly Twitter, for information aggregation, research propagation, developing networks and collaborations and interacting with the wider medical community. They are risk averse and reluctant to endanger their reputation or engage in behaviours with medico-legal risk.

This essay will compare the social media activity of two cancer communities (patients and health care providers). The #bcsm breast cancer social media hashtag on Twitter is used throughout this paper to give examples, as it is publicly available. However, Facebook is the platform more commonly used by patients and carers in Australia.

Health care providers and cancer patients are both active on social media, but to different extents, for different purposes and on different platforms.

Keywords   #socialmedia #cancer #community #bcsm

Australian cancer patients’ use of social media

“Cancer is a major cause of illness in Australia and has a substantial social and economic impact on individuals, families and the community,” according to the Australian Institute for Health and Welfare (AIHW)[i]. The leading new cancer diagnoses are breast and prostate cancer, most commonly diagnosed in the age range of 70-74.  Around 7 in 10 cancer patients survive for more than 5 years[ii] so patients and carers have a long period in which they could be active in cancer social media communities.   

Australians are active uses of the internet and social media. Internet penetration in Australia was estimated at 88% in January 2020[iii] while social media penetration was estimated at 71%.  Around 18 of 26 million[iv] Australians use social media regularly. Around 60% of Australians are active users of Facebook, with half logging on daily.[v]

The most active social media platforms in Australia are Facebook and YouTube at around 16 million users, and Instagram and WhatsApp with around 8. Following in popularity are LinkedIn, Snapchat, WordPress and Twitter with around 6 million users.

Older Australians are more likely to be diagnosed with cancer and are taking up use of the internet and social media (most commonly Facebook) at increasing rates. There are approximately 8 million Australians over 50. A third (36%) frequently go online, while 1 in 12 never go online[vi].  

Social media, the freely available Web-based platforms that facilitate information sharing of user-generated content, such as social networking sites, media-sharing sites, blogs, microblogs, and wikis, have transformed the way we communicate as a society. [vii] Social media use by patients is felt to affect the healthcare professional and patient relationship, by leading to more equal communication. [viii]

Cancer patients use social media in two ways: as an  information source and through  participation in communities[ix].

Cancer patients and their carers use social media to become part of a virtual community, which provides support. A virtual community in healthcare is a group of people using telecommunication with the purposes of delivering healthcare and education, and/or providing support. It covers a wide range of clinical specialties, technologies, and stakeholders[x]. Online health communities present a convenient network for individuals to interact with experientially similar others and exchange social support.[xi]

Some individuals prefer to obtain social support via online (weak-tie supports) versus traditional offline networks (strong-tie supports, like family and friends). Online weak-tie supports “involve individuals who interact with each other in a limited way through computer-mediated communication, such as exchanging information or finding company”. Online weak ties (such as those on social media communities) offer several advantages, for example being less judgmental, more objective, having relevant experience, and less role conflict[xii]. Social media not only establishes weak tie supports but maintains them over time.

A tweetchat is a public online discussion, occurring regularly at a stated time and is marked by use of a certain #hashtag. An example in the breast cancer community[xiii] can be seen in tweetchats using #bcsm (breast cancer social media). The Breast Cancer Social Media (#BCSM) chat began in 2011 as a conversation on Twitter and has grown into a robust virtual community (@BCSMChat; http://bcsm.org/).[xiv] An individual tweeting about something of relevance to the breast cancer social media community will use a hashtag to mark their post such as #bcsm. When another individual wants to find posts relevant to breast cancer social media, they will search for posts marked with this hashtag.

The participant below concisely described her diagnosis, management and feelings in a few characters. Her handle (username) refers to the fact that her cancer carries a poor prognosis. This tweet was chosen as an example to demonstrate that the poster can efficiently document in the community that she is a survivor of a poor prognosis cancer for nearly 5 years, and is coming up for some investitgations which will reveal if her cancer is still undetectable. She expressed that she is feeling anxiety about her upcoming scans, likely seeking support from her community.

Communities celebrate good news and mourn the bad together. Because breast cancer treatment is characterised by having many lines of therapy, patients with breast cancer may be community members for some time[xv].

Hampton[xvi] notes that “digital communication technologies have reduced the costs of interacting across time and space.” “Recent technologies …. have the potential to fundamentally change the structure of community.” Online Health Communities have become a major source of social support for people facing health concerns[xvii] like cancer.

People may post on social media  about their own health situation, and answer others’ queries about theirs. They may ask for reassurance, information and similar experiences. Their posts may be directed generally to the group (for example using  a hashtag on Twitter, or in a private group on Facebook) or towards a member of the community who is known to have an interest and expertise in the relevant area. This could be done through direct message or by tagging them into  (mentioning their username in) a post.

 

The second major way in which cancer patients use social media (after obtaining a community)  is to obtain information. In 2018, around 80% of Americans with cancer sought health related information on the internet.[xviii] Cancer patients report that their information needs are complex and change over time[xix], however the information they had been given was “often patchy, inconsistent, contradictory and haphazard”.  Patients who have just been diagnosed with cancer forget substantial amounts of the information they have been given by their doctor[xx].  Social media platforms provide direct access to an unprecedented amount of information, which can influence behaviour[xxi].  

Dr Attai is a well-known breast oncologist and a co-moderator of the #BCSM tweetchat. Here she provides education about inflammatory breast cancers.

Cancer patients recognise the advantages of obtaining relevant information from their community on social media. Cancer patients are empowered through online knowledge acquisition and interactions with support groups.[xxii] The information is readily available, in any place at any time, and can be invaluable for people with rare cancers.

There are disadvantages to using social media for information. Patients are aware that some information on the internet is wrong and often seek to verify it[xxiii]. Misinformation is more common on Twitter than on other social media platforms[xxiv].

Some people do not have access to the internet. People who have poor literacy and older people are at risk of being excluded from using social media to obtain information. Patients may also be reluctant to use social media due to private concerns, however they may be more willing to share medical details than information about their daily life or identity. [xxv]

Health care providers’ use of social media

In general,  clinicians and researchers use social media professionally for two reasons: as an information aggregator and engagement tool.[xxvi]  These uses have parallels with the reasons for cancer patients using social media above: for information and community.

The flow of health information has increased exponentially and health care providers use social media to curate the flow of relevant information. Busy clinicians face competing demands on their time. Obtaining information about advances in clinical practice is often done after working hours. Taking our previous example of #BCSM breast cancer social media, a breast cancer clinician may join Facebook and LinkedIn pages following the latest breast cancer developments. Published papers in Google Scholar or similar academic sites come to their attention through alerts on the day of publication. They may participate in Tweetchats with consumers to gain the perspective of patients not being treated by them. They could set up alerts to be notified when prominent researchers in their field publish or tweet.

Live tweeting of oncology conferences eg. ASCO has exponentially increased in recent years. [xxvii] The percentage of authors who turned to Twitter to discuss scholarly work increased from 10% in 2013 to 20% in 2015 and 42% in 2017 (P < .001). [xxviii]

Conversations about developments in their field on social media also enhance engagement with both patients and other health professionals.  Social media is a field in which the distinct communities of patients and health care providers can meet. “Information technology and the Internet have revolutionized communication to such an extent that humans can now communicate with colleagues anywhere at any time using social media platforms”, write Rolls et al. Lupton and Michael [xxix] report that “Work organizations can often see social media use by their employees as positive in terms of increasing morale and feelings of cultural belonging, developing professional networks, sharing and accessing knowledge and information…”

Health researchers use the powers of information aggregation and networking in cancer social media to carry out and propagate research.. Health researchers use social media in a professional as well as social capacity[xxx]. Dol et al report that health researchers use social media to keep abreast of developments in their field, post content, network with colleagues, and to conduct research. Klar notes that “The possibility that scholars can push their research out, rather than hope that it is pulled in, holds … potential. Twitter is the favoured platform for health professionals. [xxxi]

Virtual communities facilitate professional networking and knowledge sharing for health professionals. [xxxii]  not only in their particular area of interest, but in health care generally, for example #medtwitter and #meded for education. The breast cancer clinician may follow a variety of hashtags in addition to #BCSM.

Health care professionals use social media to network with their community, as well as to obtain and propogate information.  This use of social media is more analogous to the way in which patients and carers use social media for community. Australian medical parents can meet on a 10,000 person Facebook group – “Medical Mums and Mums-to-be”.  The group has a hundred subgroups which range from professional groups to social support for parents in medicine. Members gain social support and also frequently new medical knowledge.

Healthcare providers’ presence on social media is growing to meet patients’ need for information and for professionals’ connection with each other. However, the extent to which health professionals use social media is less than that of cancer patients.

In healthcare there are polarized views regarding the benefits and risks of professional social media use. [xxxiii] There are risks in health providers using social media.  Health organisations are often concerned about the legal and policy implications of their employees using social media.  Health organisations are nervous about their employees using social media in a way that might cause them embarrassment and impact on patient privacy. Employer policies often limit the extent to which employees may use social media. Professional regulatory bodies impose guidelines concerning the social medial behaviour of health professionals.

What social media cannot do, however, is meet the patients’ and carers’ needs for the more individualised information they want about their own particular case and contact with their own doctor is problematic from a professional standards and ethical perspective. Health professionals’ use of social media can weaken the line between work and home, impacting work life balance.

Conclusion

Cancer communities are active in social media. Different communities are active in different ways, for different purposes, and on different platforms. Patients with cancer are skewed towards an older population, more active on Facebook than on other platforms. Their community uses social media for information and support.

Health providers are more ambivalent about the utility of social media. Professional obligations with respect to organisational reputation and patient confidentiality compete with their need for information aggregations, networking and community. They predominantly use social media platforms like Twitter and Facebook for research propagation, developing networks and professional collaborations.

Research on this topic is growing but predominantly limited to affluent English-speaking communities. What do patients and health care providers desire from their social media community? Future directions for research could explore the gap in social media participation between cancer patients, their carers and cancer health care providers.



[i] Cancer data in Australia, Summary – Australian Institute of Health and Welfare. Australian Institute of Health and Welfare. (2021). Retrieved 28 March 2021, from https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary.

[ii] Cancer in Australia 2019, Summary – Australian Institute of Health and Welfare. Australian Institute of Health and Welfare. (2021). Retrieved 28 March 2021, from https://www.aihw.gov.au/reports/cancer/cancer-in-australia-2019/summary.

[iii] Digital 2020: Australia — DataReportal – Global Digital Insights. DataReportal – Global Digital Insights. (2021). Retrieved 28 March 2021, from https://datareportal.com/reports/digital-2020-australia.

[iv] Population clock. Abs.gov.au. (2021). Retrieved 28 March 2021, from https://www.abs.gov.au/ausstats/abs@.nsf/0/1647509ef7e25faaca2568a900154b63?OpenDocument.

[v] Social Media Statistics Australia – January 2021 : Social Media News Blog Australia. Socialmedianews.com.au. (2021). Retrieved 28 March 2021, from https://www.socialmedianews.com.au/social-media-statistics-australia-january-2021/.

[vi] Digital behaviours of older Australians. eSafety Commissioner. (2021). Retrieved 28 March 2021, from https://www.esafety.gov.au/about-us/research/digital-behaviours-older-australians.

[vii] Chretien, Katherine & Kind, Terry. (2013). Social Media and Clinical Care Ethical, Professional, and Social Implications. Circulation. 127. 1413-21. 10.1161/CIRCULATIONAHA.112.128017.

[viii] Smailhodzic, E., Hooijsma, W., Boonstra, A., & Langley, D. (2016). Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Services Research16(1). https://doi.org/10.1186/s12913-016-1691-0

[ix] How Social Media Has Altered the Cancer Patient Experience – Care+Wear. Careandwear.com. (2021). Retrieved 3 April 2021, https://www.careandwear.com/blogs/community/how-social-media-has-altered-the-cancer-patient-experience#:~:text=Social%20media%20has%20expanded%20patient,age%2C%20 gender%2C%20and%20more.

[x] Ilioudi S., Lazakidou A.A., Glezakos N., Tsironi M. (2012) Health-Related Virtual Communities and Social Networking Services. In: Lazakidou A. (eds) Virtual Communities, Social Networks and Collaboration. Annals of Information Systems, vol 15. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-3634-8_1

[xi] Zhu, Y., Guan, M., & Donovan, E. (2020). Elaborating Cancer Opinion Leaders’ Communication Behaviors Within Online Health Communities: Network and Content Analyses. Social Media + Society6(2), 205630512090947. https://doi.org/10.1177/2056305120909473

[xii] Stiles, B., & Mynard, J. (2021). Social Media and Your Cancer Patient. Seminars In Thoracic And Cardiovascular Surgery. https://doi.org/10.1053/j.semtcvs.2020.12.014

[xiii] Platt, J., & Brady, R. (2019). #BCSM and #breastcancer: Contemporary cancer‐specific online social media communities. The Breast Journal26(4), 729-733. https://doi.org/10.1111/tbj.13576

[xiv] Markham, M., Gentile, D., & Graham, D. (2017). Social Media for Networking, Professional Development, and Patient Engagement. American Society Of Clinical Oncology Educational Book, (37), 782-787. https://doi.org/10.1200/edbk_180077

[xv] Falisi, A., Wiseman, K., Gaysynsky, A., Scheideler, J., Ramin, D., & Chou, W. (2017). Social media for breast cancer survivors: a literature review. Journal Of Cancer Survivorship11(6), 808-821. https://doi.org/10.1007/s11764-017-0620-5

[xvi] Hampton, K. (2015). Persistent and Pervasive Community. American Behavioral Scientist60(1), 101-124. https://doi.org/10.1177/0002764215601714

[xvii] Zhu, Y., Guan, M., & Donovan, E. (2020). Elaborating Cancer Opinion Leaders’ Communication Behaviors Within Online Health Communities: Network and Content Analyses. Social Media + Society6(2), 205630512090947. https://doi.org/10.1177/2056305120909473

[xviii] Fareed, N., Swoboda, C.M., Jonnalagadda, P. et al. Persistent digital divide in health-related internet use among cancer survivors: findings from the Health Information National Trends Survey, 2003–2018. J Cancer Surviv 15, 87–98 (2021). https://doi.org/10.1007/s11764-020-00913-8

[xix] Rozmovits, L., & Ziebland, S. (2004). What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Education And Counseling53(1), 57-64. https://doi.org/10.1016/s0738-3991(03)00116-2

[xx] Jansen, J., Butow, P., van Weert, J., van Dulmen, S., Devine, R., & Heeren, T. et al. (2008). Does Age Really Matter? Recall of Information Presented to Newly Referred Patients With Cancer. Journal Of Clinical Oncology26(33), 5450-5457. https://doi.org/10.1200/jco.2007.15.2322

[xxi] Cinelli, M., Quattrociocchi, W., Galeazzi, A., Valensise, C., Brugnoli, E., & Schmidt, A. et al. (2020). The COVID-19 social media infodemic. Scientific Reports10(1). https://doi.org/10.1038/s41598-020-73510-5

[xxii] Stiles, B., & Mynard, J. (2021). Social Media and Your Cancer Patient. Seminars In Thoracic And Cardiovascular Surgery. https://doi.org/10.1053/j.semtcvs.2020.12.014

[xxiii] Suarez-Lledo, V., & Alvarez-Galvez, J. (2021). Prevalence of Health Misinformation on Social Media: Systematic Review. Journal Of Medical Internet Research23(1), e17187. https://doi.org/10.2196/17187

[xxiv] Suarez-Lledo, V., & Alvarez-Galvez, J. (2021). Prevalence of Health Misinformation on Social Media: Systematic Review. Journal Of Medical Internet Research23(1), e17187. https://doi.org/10.2196/17187

[xxv] Frost, J., Vermeulen, I. E., & Beekers, N. (2014). Anonymity versus privacy: selective information sharing in online cancer communities. Journal of medical Internet research16(5), e126. https://doi.org/10.2196/jmir.2684

[xxvi] Sedrak, M., Attai, D., George, K., Katz, M., & Markham, M. (2018). Integrating Social Media in Modern Oncology Practice and Research. American Society Of Clinical Oncology Educational Book, (38), 894-902. https://doi.org/10.1200/edbk_204453

[xxvii] Chaudhry A, Glodé LM, Gillman M, et al. Trends in twitter use by physicians at the American Society of Clinical Oncology annual meeting, 2010 and 2011. J Oncol Pract. 2012;8:173-178.

[xxviii]  Markham, M., Gentile, D., & Graham, D. (2017). Social Media for Networking, Professional Development, and Patient Engagement. American Society Of Clinical Oncology Educational Book, (37), 782-787. https://doi.org/10.1200/edbk_180077

[xxix] Lupton, D., & Michael, M. (2017). “For Me, the Biggest Benefit Is Being Ahead of the Game”: The Use of Social Media in Health Work. Social Media + Society3(2), 205630511770254. doi: 10.1177/2056305117702541

[xxx] Dol, J., Tutelman, P., Chambers, C., Barwick, M., Drake, E., & Parker, J. et al. (2019). Health Researchers’ Use of Social Media: Scoping Review. Journal Of Medical Internet Research21(11), e13687. https://doi.org/10.2196/13687

[xxxi] Markham MJ, Gentile D, Graham DL. Social media for networking, professional development, and patient engagement. Am Soc Clin Oncol Educ Book. 2018;37:782-787. doi:10.1200/EDBK_180077

[xxxii] Rolls, K., Hansen, M., Jackson, D., & Elliott, D. (2016). How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review. Journal Of Medical Internet Research18(6), e166. https://doi.org/10.2196/jmir.5312

[xxxiii] Rolls, K., Hansen, M., Jackson, D., & Elliott, D. (2016). How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review. Journal Of Medical Internet Research18(6), e166. https://doi.org/10.2196/jmir.5312

14 thoughts on “Cancer patients are ahead of cancer health care providers in healthcare social media.

  1. Hi Sonia,

    I really enjoyed your paper! It was so interesting to think about and I found myself thinking about how so much of healthcare now relies on some form of digital particiption. I work in pharmacy and in recent years, and quite rapidly too, we have had to adapt our practice to suit changing technology. This can be difficult especially when dealing with people who might be ill, old or unable to utilise such technology. For instance we now have the ability to process e-scripts and have an app where people can find information about their medication and order repeats. Furthermore we are now under instruction to only take flu vaccination appointments that have been booked online. So much of our customer base is unable to make this jump to digital either becasue of age, accessibilty etc and can often be more of a hinderence than a help.
    Althought these occurences are different to the formation of cancer communities online etc it made me consider the fact that although such digital advancement is undoubably useful in the heathcare field it still assumes indiviudal ability to access it.
    I think I am reflecting Gemmas comment a litte where she says ‘Given the benefits for patients that come from finding community on social media, is this something healthcare workers should be trying to encourage more within this demographic? Beyond just giving them pamphlets, should they be giving them the names of some patient-oriented community groups as an initial starting point to help make them aware that they can find support online too?’
    I think I agree with her that educating patients on the availabilty and how to use such platforms is posibly more useful in terms of time and information than a doctor being present on social media. So much of healthcare is individual but community support is wonderfully inclusive and should definitely be accessed as much as possible.
    Sorry for going off on a little tangent there but so much to think about so thank you for sharing such great information and ideas Sonia!

    Jessica

  2. Hi Sonia!

    I’m sorry I am so late to comment on your paper! But I really did find it to be such an insightful read!

    I found it particularly interesting, yet understandable, how these two groups you discuss use social media for different purposes. For the healthcare workers, it is a professional relationship they develop with these patients offline and thus may feel it is best not to involve their social media identity, though still related to work, with the personal identity of the patients online. As you mention, this could result in blurring the spheres of work and home for them, and this collapse could potentially be seen as unprofessional. Not only would this loss of balance be a key reason guiding their usage purposes, but so would the guidelines imposed on how they use social media by regulatory bodies, as you also discuss briefly. I think this would have been an interesting area to explore further to see just how constricting these guidelines can be and whether this is preventing healthcare workers and patients from utilising the affordances of social media to its full value potential.

    The aspect of age within these demographics was something I had not considered, but the relationship between the uptake of social media by older users and the diagnosis of older people is quite noteworthy. Given the benefits for patients that come from finding community on social media, is this something healthcare workers should be trying to encourage more within this demographic? Beyond just giving them pamphlets, should they be giving them the names of some patient-oriented community groups as an initial starting point to help make them aware that they can find support online too?

    Your examples with the hashtags were also really well integrated, and it fascinates me how community can be formed within a hashtag. Especially on Twitter where character limit is shortened, it is amazing how much information you can communicate that could potentially lead to meaningful connections. Being an outsider to this community, I didn’t know what bcsm stood for, but this intimacy formed from the shared knowledge these members hold would be really valuable, and it shows just how vital it is for patients to have these niches online.

  3. Hi Sonia

    Thanks for your excellent paper. Cancer has certainly touched my life and continues to do so as I age.

    I have a daughter who has a rare health condition and often we have had to go online to find out about different treatments. We have also formed with other families online to discuss the day-to-day management of the condition from other parents that have already been there.

    Sometimes this practical information just does not come from the doctors. I see some comparisons with your paper in this sense. I think the patients and their families have embraced social media far greater than the medical profession in the sense of building those relationships. When you first receive a diagnosis you are often given a pile of pamphlets and it’s almost like information overload at a time that is very emotionally draining. It is good to go online to try and understand what is going on and find others who understand.

    I can see an opportunity perhaps for doctors to potentially share information into the patient communities and it is pleasing to see a few are engaging on Twitter.

    I see some parallels with my own paper. I wrote about military families finding community online and what opportunities were there for official support networks to connect and share more information. I have seen some doctors on TikTok

    https://networkconference.netstudies.org/2021/2021/04/26/finding-community-online-as-a-military-partner/

    Do you have any ideas how the medical community can be encouraged to interact more with patients online or will there always be a perceived risk?

    All the best
    Michelle

    1. Me again, I have been commenting on a few papers here that discuss TikTok and I remembered I had seen a few doctors starting to do videos on this platform. I searched TikTok for ‘doctor’ and ‘cancer’ and believe it or not there are a few doctors talking about cancer. Maybe this is a start? I know TikTok is predominantly for younger people but that is changing and videos can be shared to other platforms. More food for thought.

      Regards
      Michelle

      1. oh cool!! There are a few doctors and nurses who are famous on tiktok, I will have to check them out!
        sonia

    2. Hi Michelle,
      Thank you so much for your comment. I really appreciate your sharing your experience with being given too much written information which does not address the practical problems you might have.
      Being really honest here… because cancer professionals have quite a long intense day at work with a LOT of unpaid overtime, it is perceived by a lot of doctors and nurses that then going home and talking to other people’s patients online for free does not hold much appeal. I think this demonstrates that social media in medicine is regarded as a non core, optional ‘hobby’ rather than being part of our work in communication with patients. But reading your comment, it seems that it’s much more useful than the actual formal information that we provided.
      The other thing is that sometimes we dont’ know the practical information. One of my patients was frustrated last week because he could not get access to his own medical records. I let him know that he could get a log on to the patient portal and look for himself. Yay! How do I do that he asked?
      I didn’t know! I had to spend quite a bit of time trying to find out. Once again, I knew the principal (patients can access portal) but not the details of how to actually do it.
      I think if we did hang out more on social media doctors would also learn more of the practical details which would be helpful for everyone.
      Best wishes, sonia

    3. Michelle I wanted to let you know that since reading your comment I have been asking patients more about practical concerns and also learning myself by (trying to ) find the answers. Thanks for your insight – it changed my practice!
      sonia

  4. Hi Sonia,

    This was an insightful read as I’ve never really put any thought into the relationship between cancer patients, health care providers, and social media so it was interesting seeing your take on this.

    From your essay, it is evident that social media plays a vital role for cancer patients as it allows them to form communities in order to lend support to one another as well as a comforting environment where they can share information and learn from one another as well as support each other.

    The only thing I would say is exactly what Grace had already mentioned. Your essay is about how ‘ Cancer patients are ahead in healthcare social media’ but from reading the essay, I was a bit unsure about this as well but this was a very interesting read and I definitely learnt and gained some knowledge on this topic so well done!

    1. thanks so much Saranya!
      I am happy to have gotten some comments, I really appreciate it
      sonia

  5. The paper has given me a good insight about the engagement of social media by cancer patients and health care providers. From the reading, cancer patients use Facebook Groups to communicate , share and keep in touch with other cancer patients. Health care providers use Twitter to interchange information and professional networking. Both communities embrace digital platforms. Can you clarify why ‘Cancer patients are ahead in healthcare social media’? Sorry I may have misread your article.

    1. Thanks Grace! You are right, I could have been clearer on that point. The proportion of patients involved in social media is much higher than the proportion of health care providers using social media, and their involvement is deeper. As an example, a health care provider or service might make a few tweets a week or just at conferences, whereas some cancer patients are deeply immersed in their online community.
      Thanks very much for this helpful question
      sonia

      1. You have made the point that cancer patients are more active social media users compared to cancer health care providers. I believe health care providers shy away from social media due to privacy, safety and misinterpretation risk. In your opinion, in what way can health care providers use social media effectively? Thanks for your discussion.
        Grace Lo

        1. Hi Grace,
          Thanks so much for your comment.
          I think that health providers can use social media freely to educate themselves and participate in research (as researchers and clinicians reading others’ work)
          I think health providers such as doctors, nurses, and health services can promote cancer prevention strategies, although this will have a low impact. They can post generic information about their area of interest. It’s hard though because a patient may respond to a post with questions about their own medical situation, and it’s hard and unsatisfying for both parties to say “see your own doctor”.
          I think health providers could hang out on groups used by patients and answer questions generically if possible. Hard though… the boss won’t pay for such activities, and it is a further eroding of the work/life balance….
          Best wishes, sonia

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