Surprisingly little research by sociologists or media studies researchers has investigated how Twitter is used to discuss health and medical issues. Yet there are many interesting issues and topics to explore.
The Healthcare Hashtag Project operated by Symplur, a healthcare social media analytics company, provides a publicly available online resource that demonstrates the diversity of health and medical topics that are discussed on Twitter. When I checked the website in early May 2016, the Project had identified close to 13,000 healthcare topics, over 10,000 hashtags related to healthcare and almost 4,000 contributors to these discussions on Twitter. The diseases that were receiving attention on Twitter on that day included breast cancer, migraine, brain tumours, lymphoma, heart disease, diabetes, lung cancer, attention deficit disorder and leukaemia (these were the top ten trending diseases in order).
The site also shows the ‘influencers’ in the Twitter discussions it documents as well as the latest tweets related to the hashtags it collects. This information demonstrates the sheer diversity of actors who engage in discussions about medical conditions and healthcare on Twitter. The top ten (by mentions) ‘influencers’ for the hashtag #BCSM (denoting ‘breast cancer social media’) were a clinical professor in surgery, four individual breast cancer survivors, a medical school and a research institute, two patient coalitions (one for men with breast cancer and one for young women with breast cancer) and the Journal of the American Medical Association.
The story is quite different if the hashtag #digitalhealth is examined. Another market research company has analysed over 200,000 tweets and almost 30,000 engaged users to identify the top influencers and brands in Twitter discussions using #digitalhealth. The company looked at tweets using this hashtag over a period of four months spanning January to April 2016 and produced a list of the top 100 influencers (based on PageRank analytics that takes into account the number and quality of textual references).
The first four influencers listed (who gained much higher influence scores than any of the 96 others on the list), included Hungarian doctor, genomic scientist, digital health consultant and self-described ‘medical futurist’ Bertalan Mesko, followed by American John Nosta, another digital health consultant who runs his own think tank and is a member of the Google Health Advisory Board. A British health technologist, Alex Butler is next and fourth is American Paul Sonnier, another digital health consultant. These influencers are followed by more representatives of private digital health consulting or technology companies, some tech journalists and a representative from massive American pharmaceutical chain Walgreens. Academics are not well represented in the top 20: only three appear, beginning from number 13 on the list. Practising doctors and individual patients, or organisations for doctors or patients, are scarce.
The most common topics discussed by the top influencers were data (by a long way, accounting for a quarter of the tweets), the Internet of Things and wearable tech. The topics of apps, cancer, artificial intelligence, cybersecurity and telemedicine were the next-most discussed (however, they all received less than 10 per cent of discussion across the tweets).
It is evident from this report that digital health discussions on Twitter (at least those that use #digitalhealth to signify their content) are dominated by commercial and entrepreneurial interests rather than by the experiences of doctors or patients. With the exception of Susannah Fox from the US Department of Health and Human Services, spokespeople from government agencies appear to have little influence in these discussions. This is borne out by the list of top-most influential brands, which are again dominated by commercial enterprises (although the NHS England is included towards the bottom of the top 25).
These data raise some interesting questions for a digital health sociologist. How do voices other than commercial enterprises get heard on Twitter? What makes some conditions or diseases more talked about on Twitter than others? For example, why is breast cancer so prominent — is it because there are far more patient advocates and organisations for patients devoting attention to discussing this , or is it because it is a common form of cancer, or are other factors involved? Why do some practising doctors and medical specialists decide to get involved in Twitter discussions on a particular condition or a digital health technology? How do all the different actors engage with each other –- who pays attention to whom? What kinds of networks are formed between actors from the different groups who are advocates or healthcare providers or developers?
This Sociological Life 
Hi Deborah
big fan of your work and use a lot of your material with students. In response to “It is evident from this report that digital health discussions on Twitter (at least those that use #digitalhealth to signify their content) are dominated by commercial and entrepreneurial interests rather than by the experiences of doctors or patients”.
After a limited and ongoing analysis related to #bigdata and #health I am coming to the same conclusion and also raising the same problems(https://snacda.com/2016/04/04/attending-iamcr-2016-in-leicester/).
It is difficult to be heard on a platform that is being used for information distribution rather than community building (https://snacda.com/2016/05/03/towards-a-typology-of-hashtag-publics-a-large-scale-comparative-study-of-user-engagement-across-trending-topics/).
Steven
Thank you Steven. It’s interesting to hear that your research supports my (very quick and dirty) reflections. I have not done any extended analysis, but from my own use of Twitter and the #digitalhealth hashtag, it has been evident to me for a long time that it is dominated by entrepreneurial and commercial interests rather than any kind of viewpoint from the subjects of digital health – the public/patients.
A thought provoking post which has compelled me into replying with some insights I’d like to share with regard to the points you have made. It’s not surprising that consultants/entrepreneurs are among the top of the list, since one’s personal brand, influence and social media presence is often what brings in work. Consultants and entrepreneurs frequently work hard on pitching and selling their ideas about the future, because if they don’t influence anyone, they don’t get work, and don’t earn money. If you’re someone with a busy job, and a regular paycheck, such as an academic or a doctor, then I suspect there is less motivation (and time available) to join in to Twitter discussions. Virtually all doctors I know are so damn busy taking care of patients, I am delighted that some manage to pop in to Twitter for a discussion. Furthermore, whilst there are some brilliant doctors and academics who are also brilliant at listening, learning and engaging with others on Twitter, that’s not my experience with most I’ve worked with in those professions. Academics in particular, despite their deep scientific knowledge, have below average communication skills. These are my personal observations, from both attending scientific symposiums in person as well as viewing how many academics use (or don’t use) Twitter. Some people just have trouble telling stories and connecting with people in a meaningful way.
In terms of government representatives, then I suspect that many are afraid of using Twitter and expressing their true thoughts, as they may deviate from the policies their government has brought in. I know of individuals in senior roles in both government and the private sector who either hide their employer affiliation on Twitter or have a fake account entirely, so they can participate in the discussion without being afraid. I suspect some patients are also in the same boat, in terms of being afraid to use their real name on Twitter and/or even be on Twitter, since they may believe that being open about their disease, and how they have been treated within the healthcare system may actually negatively impact the care that they receive. I’m deeply impressed by any patient that shares their story on Twitter, as it takes courage, vulnerability and grit that I am not sure I would have, if in their shoes.
When it comes to the voice of patients and doctors, I’m a consultant (and on the list you cite), and I do my level best to use my influence to give a voice to those who are often unheard. I’ve written blogs about a doctor who wants to shift to a world of prevention, and a young lady living with Usher Syndrome who has managed to get shape how Apple are making the products more accessible. I believe you can be a consultant with commercial objectives but still include the voice of patients, doctors and society at large in your work. The advice I give as a consultant is heavily influenced by the stories that I hear on Twitter, whether that story is told by a patient, a doctor or just a family member who is tired of battling with a healthcare system to get what they need.
I suspect many are not using the hashtag of #digitalhealth because they either don’t use hashtags, or they are using hashtags with a smaller audience, such as #healthIT, #mhealth or #ehealth. Whilst some may believe these hashtags represent the same thing, the reality is that a number of large organisations are setting up Digital Health groups (often covering a much larger arena), not mhealth groups, or ehealth groups. Those who are not entering the Digital Health conversation, on Twitter or elsewhere could well be missing out on the momentum that is building associated with that particular umbrella term.
With regard to why some diseases get discussed more than others, I’m not entirely sure on that point. Maybe some diseases move people emotionally more than other diseases? Maybe some patients prefer communities on Facebook or online forums, rather than Twitter?
In terms of networks, I’ve personally translated my Twitter network into real-life events. I host Digital Health gatherings, both in London and when I travel, and in both situations, I meet a lot of people in person for the first time (despite interacting with them over Twitter for a few years) – Many of those daily interactions on Twitter have evolved into both friendships and business opportunities.
Finally, many people still view Twitter as a waste of time, something that their children use, or just don’t know where to start. When I ask most people I meet at conferences why they are not on Twitter, they usually respond with one of those answers.
Thank you, Maneesh, for your very interesting observations. It’s interesting to hear the perspective of a digital health consultant – that is a world that we sociologists should spend more time exploring. I agree that more academics should be on Twitter, as it can be such a productive way of engaging not only with colleagues but those outside the universities. I take your point about doctors not having much time to go on Twitter – although there are many notable exceptions among those medical professionals who tweet about specific illnesses, so this raises the question of why doctors don’t tweet much about digital health (Eric Topol excepted!). This may be an indicator of doctors’ lack of interest in digital health, simply not realising what is going on in this space, some element of wariness about new technologies or outright rejection of them – or other factors. We simply do not know! This strikes me as another area ripe for academic research.
As for academic engagements – yes, many academics have yet to realise and take advantage of the potential of Twitter.
(PS I am also on the digital health ‘influencer’ list – but way down the bottom!).
Hi Deborah, Thanks for the swift reply. I remember meeting Dr Topol at his conference at Scripps last year, and feeling amazed seeing him post his own tweets. I know some people who are busy, and pay someone else to curate content for their tweets and they have a monthly list of tweets which they rotate automatically using that 3rd party. I did consider that but decided that curating and generating content for my tweets myself would be much more authentic.
It may be that because so much of the discussion in Digital Health is about brand new technologies in the market, or even technology still being developed, that puts off many from joining the conversation. After all, if you can’t use a product in clinical practice/research today, then maybe it’s perceived as having no value? However, even before Digital Health, people used to (and still do) get excited about the future of new drugs that were in clinical trials, often years away from market. Discussing emerging technology such as a novel wearable device may sound silly to some people, but maybe for others, it gives hope of a better future, an era when they might be able to self manage their long term condition at home with fewer trips to the hospital? Whilst I know some patients who use Twitter, and some researchers are interested in building a ‘digital phenotype’ using data from tweets, I’m not sure that the user base of Twitter represents society as a whole, and we have to be very mindful about whose views and opinions are either not represented at all, or under represented. I look forward to research that you and your peers will conduct to help us understand the dynamics of Twitter conversations and networks within the health space. Be well, Maneesh
The article says the first academic comes in at #20. That is false. I am a Professor of Medicine and Public Health at UCLA, teach the digital health course at the UCLA School of Public Health, have developed and validated mHealth apps and wearable biosensors as part of my academic digital health lab, am Editor-in-Chief for a major professional journal, and have published over 150 peer-reviewed papers. I come in at #13. David Albert is close behind and teaches a U. Oklahoma and publishes on his work extensively. That said, it is correct that few academics are in the top 25, and none in the top 10 I believe.
Thank you for pointing this out, Brennan. It wasn’t obvious from your and David Albert’s listing that you were academics, as the list provided by Onalytica has you identified as ‘MD’ with Cedars Sinai rather than with UCLA, and shows David also as a ‘MD’ and with the AliveCor company. Sherry Pagoto, who came in at number 20, is clearly identified as working at the University of Massachusetts on the list. But I stand corrected! Thanks again.
And I’ve edited the post to correct it!
Thank you for correcting the error. I’m not sure what was unclear about the table provided by Onalytica, but Cedars-Sinai is the largest academic medical center in the western United States. We have our own graduate program and are also part of UCLA School of Medicine. Additional searching will reveal that I also have an academic pages at UCLA as well as Cedars-Sinai. It might be worth going back over the search and carefully investigating the background of each individual beyond the minimum data provided in the table. There may very well be other academics throughout the list that you did not identify in the initial cursory search. You may in fact change some of your conclusions as a result.
Still reading the article , nice one!!
Hi Deborah, thanks for this great post. I am currently working on a 50000+ tweet archive in relation to BRCA (the gene mutation that leads to increased risks of breast and other cancers) and yes, #BCSM comes up as one of the most influential actors in terms of both broadcasting and gatekeeping dynamics, especially in periods off the “Jolie’ effect”. I myself am asking very similar questions to yours, in terms of what makes a health condition more “activist” than another. Take Lynch syndrome, a gene mutation that has similar effects to BRCA mutation but has primary effects on Colon cancer. You’ll find not even half of the Twitter engagement or “hashtag activism” that you find with BRCA. But then breast cancer activism has a long legacy – and a more appealing narrative (breast versus colon…a lost battle, indeed). What I am not sure about is whether commercial enterprises truly have the monopoly of Twitter health discussions. I think this may highly depend on what hashtags you focus on when you research this. In the end people do not talk of #digital health when they talk about their health, but they certainly talk of #bc (breast cancer) or #coloncancer. So I am not so surprised that #digitalhealth per se does not score high with patients. Why would it?
Thank you, Stefania – it’s interesting to hear about your study. And yes, you are right about digital health as a hashtag not necessarily being an obvious one for patients to use – although having said that, there are quite a few well-known activist patients involved in digital health discussions more generally, such as ‘@ePatient Dave’, who advocate for patient engagement via digital health tech and call for doctors to promote this type of engagement.
Thanks for this Deborah. Yes, there are quite a few on both the patient and the physician’s side (I am thinking about @ErikTopol here). But my feeling is that most patient activism on Twitter goes with health conditions (disease constituencies). And again this may be a legacy from traditional patient activism. But in a way what they do is digital health (more in the sense of health info exchange on digital platforms than of wearables and quantified self per se) without using #digitalhealth. In other words, my feeling is that #digitalhealth still resonates more to commercial and entrepreneurial actors who produce and commercialise wearables than to the vast majority of activist patients. Many thanks for your article, truly though provoking!