Patient blogs – a useful social media tool?

In preparation for a training I’ll be giving this fall on using social media in national Tuberculosis (TB) programmes, I have been searching for examples of patient blogs to communicate about TB. I thought that there’d be at least a few different examples out there, but either there are not or maybe I’m just not using the correct search words (or there could of course also be an issue with language barriers).

TB and Me

The only real TB dedicated patient blog I have been able to find is an initiative by MSF called TB&Me. It consists of currently 27 personal blogs by current or past multidrug-resistant TB (MDR-TB) patients from all of the world. The blog, which started already in 2011, is meant as a collaborative blogging project where the patients write (if necessary with assistance) about their experiences of living with MDR-TB and the treatment that they receive, which can involve taking up to 20 pills a day for 24 months and suffering many painful side effects from the toxic drugs.

I know that there are other TB survivors that blog, but many of them are more focused on advocacy around TB rather than sharing their own patient experiences. This is for example the case of the this Romanian blog by Paula Rusu (a Romanian former TB patient and journalist).

Improving drug adherence

Intuitively it sounds like a good idea to have patients blog about their experiences, emotions and reflections. It provides an opportunity to add a personal perspective on the disease, which can be helpful to both the patient him or herself as well as other patients and relatives.

A qualitative research study of the TB&Me project published in PLOS One in 2014 found that the TB&Me blogging experience was useful for adherence to DR-TB treatment and viewed as supportive of the treatment-taking process by all bloggers and project staff, it provided support to patients (peer support, shared experience and reduction in isolation) and the blog gave the patients strength and voice.  The authors conclude that “The TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.”

Patient blogging is not new, but it’s not something that I have studied much before and I’m eager to learn more of the experiences from other disease groups. I believe there are many patient blogs related to chronic diseases like diabetes (a list of patient blogs on diabetes type 1 can be found here) and cancer, but it would be great to get some more insight into where to start and learn a bit more of also the potential negative sides of patient blogging, so please do share any insight you might have with me. Also how patient blogs could be part of broader communication and advocacy around TB. I’d love to get your insights!


Awesome reading list on using social media in academia

A few weeks ago I returned to this blog with some reflections on a article about the use of social media by researchers in Denmark. I was disappointed to see that social media and academia in traditional journalist-based media is still portrayed mostly negatively.

In search of positive Danish experiences with using social media in academic work I called out to the Copenhagen Science Communication Facebook group (closed network). Being vacation time I didn’t manage to collect personal experiences with social media (I’ll give that a try later), but I was so fortunate to be made aware of an awesome reading list on using social media for research collaboration and public engagement. The list is complied by the Impact of Social Sciences Blog by LSE.

Some of the items in the reading list I have already touched upon on this blog (e.g. how Melissa Terras boosted the number of downloads of her scientific articles), but there are also some that are new to me and which add new dimensions to the use of social media in science communication.

Social media for sharing passion

A resource that I enjoyed reading is by Tim Hitchcook, a professor of Digital History at the University of Sussex. Tim Hitchcook doesn’t add anything revolutionary new or surprising to the arguments for using social media, but he phrases many of them very well. For example, I like how he describes social media as the perfect tool for researchers to share their passion for what they do:

The best (and most successful) academics are the ones who are so caught up in the importance of their work, so caught up with their simple passion for a subject, that they publicise it with every breadth. Twitter and blogs, and embarrassingly enthusiastic drunken conversations at parties, are not add-ons to academic research, but a simple reflection of the passion that underpins it.

And he goes on to pin point to two important aspects of using social media. First: Get started on integrating social media into your work from early on and gain by building-up your skills in communication with the public; and second, communicate about the research process itself – not just about the results, findings etc.:

A lot of early career scholars, in particular, worry that exposing their research too early, in too public a manner, will either open them to ridicule, or allow someone else to ‘steal’ their ideas.  But in my experience, the most successful early career humanists have already started building a form of public dialogue in to their academic practise – building an audience for their work, in the process of doing the work itself.

Finally, Tim Hitchcook addresses a concern which many researchers I talk to have about using social media. That it is time-consuming, and basically takes time away from doing other important things. Tim Hitchcook however points out that using social media may almost have the opposite effect:

The most impressive thing about these blogs (and the academic careers that generate them), is that there is no waste – what starts as a blog, ends as an academic output, and an output with a ready-made audience, eager to cite it.

I can only encourage you to read the blog post Twitter and blogs are not add-ons to academic research, but a simple reflection of the passion that underpins is in its entirety. And also to take a look at Tim Hitchcook’s own blog Historyonics.

 

 

 


Teaching Social Media and Science Communication again

Earlier this week I had an opportunity to give a talk not on general science communication but with a zoom on social media and science communication. A field I truly feel at home in, am confident talking about and find super interesting.

The talk was in Danish and given to young researchers attending a Media course for researchers organized by the Danish newspaper Information (Informations Medieskole).

With only 45 minutes at hand I prepared a presentation of about 25 minutes, which seemed so little when there is so much to say and so many examples to share. It was a fine balance to find out whether to give a general introduction (including: what is social media?) or to give a more practical “this is how you get started” presentation. I chose to go for the first solution with a strict programme:

  1. What is social media? (5 min)
  2. How and for what can it be used? (5 min)
  3. Examples (10 min)
  4. Advantages, strengths, risks, limitations (10 min)
  5. Questions/discussion

As expected questions related to “how do I get started” popped up and so to say interrupted the flow a bit, but I guess that this, especially in new fields, is a common challenge and can really only be solved by allowing for more time or perhaps even a whole separate course on how to dive into social media as a researcher. If I was to do the later, I think I would have tried to build it around myself, and show how I got on board and started out from absolutely scratch. I could perhaps even have included a slide on my way to social media into my slides on this occasion. Perhaps I’ll do that next time.

Focusing on blogs, Facebook and Twitter

All in all the presentation went well. I decided to focus on three kinds of social media for science communication: the blog, Facebook and Twitter. Had I had more time I’d definitely included some examples of wikis too (I briefly mentioned it), but time constraints means cutting of and focusing.

blogs

As blog example I chose Rosie Redfield’s blog Rrresearch, which may be considered the executive example of a science blog and the impact it can have. It is a good case to discuss some of the advantages of science blogging including its speed compared to traditional journals, post-publication peer-review, transparency in research, getting feedback during the research process, responding to criticism as it occurs, allow for reflection and focus of thoughts and increased visibility and self-promotion. But it of course also raises questions such as validity, personal bias, time demanding, rushed and unreflected comments, violation of research ethics or institutional policies, risk of scooping etc.

twitter caseFacebook

For Facebook I took the I Fucking love Science page as an example of popularizing science and research in general, and The Center for Healthy Aging at University of Copenhagen’s Facebook page as a way of drawing attention to own research, attempting to initiate discussion and living up to donor wishes. And for Twitter I chose the Microbiology Twitter Journal Club (#microtwjc) and the tweeting done by conservator at Medical Museion in Copenhagen, Nanna Gerdes (@NaGerdes) on her work processes.

Discussion, points I tried to make and those that I thought of later

pictureAs I was ‘warned’ the students were a bunch of people with questions so the presentation of was interrupted by questions, which is great but of course also means that some questions would have been easier to answer later and makes keeping time a slippery task. Coming home after teaching I scribbled down some thoughts. Some especially targeted those students who are by definition skeptical and already think that they spend way too many hours in front of a computer screen. In bullet point format I thought I’d share some of these reflections with you.

  • A point I fear I didn’t make clear enough during my presentation: Social media are an excellent tool for communication with other researcher. Researchers on the other side of the planet, researchers in boarding fields. This has nothing to do with your communication department or with popularizing your research. This has something to do with your life as a researcher, your academic network, and your research process. It’d be a shame to miss out on an opportunity.
  • So far (at least), being on social media for research purposes is not a duty for researchers. It’s an offer, a possibility. If you actively chose to invest time in using them you have a chance of taking advantage of some their functions, which may benefit both yourself and your research. However, it does not come by itself. Social media is a give-and-take media, where you have to contribute/be active in order to benefit. It’s a matter of prioritization. (The same evening after teaching I went to visit my 92 very active grandmother who, if she wanted to, would have no problem using a computer or a mobile phone, however she has chosen not to. The same goes for using social media – it’s a choice.
  • There are pitfalls to using social media and you must use common sense as you do in any other kind of research related communication, discussions, methods, procedures etc!
  • You have to learn how to write a scientific article in order to be published in peer-reviewed journals. You have to learn how to use a smart phone to enjoy its benefits. The same applies to social media. It requires investment of time to get familiar and confident with it. That’s just how it is. But the more you use it the better you get at it. And don’t hesitate to ask people around you for advice. Just like you may ask for recommendations on what app to download to your phone when you go on vacation, ask your colleagues who they follow on Twitter, which blog they follow etc. People are willing to help.
  • On social media the person in charge is YOU. You set your own rules for how you use it, for how often you want to blog, check you twitter feed, respond to comments etc. If you don’t like the way communication people (at your university, in the press etc.) communicate your research do it yourself and supplement their work in a way you’d like to.

I enjoyed very much getting to talk about social media for research purposes, and just realized how much there is to say (making 25 minutes + 20 minutes discussion way too short time). It triggered me to revisit my own Twitter feed (which I have been neglecting lately) and to get blogging again. All in all great side effects.

Literature distributed in advance

In advance the students had been given three texts to read:


New Public Health Blog from PLOS blogs!

I can’t believe that this is my post number 101. Actually, I had planned to do something special with blog post no. 100, but I only realised that it was my anniversary post when it was published. So the celebration will have to wait for post number 500.

However, post number 101 can also be special and actually I think the topic is quite appropriate: A public health science blog hosted by PLOS blogs has arrived! It is simply called ‘Public Health‘ and has five contributors coming from different backgrounds but all with an interest in Public Health.

PLOS Blogs public healthThe blog looks very promising and the posts currently posted are well written and interesting. I look forward to following the blog and hope for many discussions.

Public Health 2.0

Not surprisingly, I am especially happy to see that the topic of social media and public health is discussed on the blog. In the post Public Health 2.0: Electric Boogaloo by Atif Kukaswadia of Queen’s University in Kingston, Ontario, Canada draws attention to strengths and weaknesses of social media in public health. It is clear that Atif comes to this with an epidemiologist’s perspective (being and Ph.d. candidate in Epidemiology), but he raises some important questions about acknowledging that social media exists and that regardless of whether people with scientifically founded knowledge make use of social media or not, people spreading untrue or perhaps even harmful public health information will continue to do so. This is in my opinion an important argument which needs to be made also to the social media skeptics.

The post is full of great links, so newcomers to the topic of public health 2.0 should take a look at the post and join the discussion.

Social media and science conferences

Atif Kukaswadia opens the blog post with discussing what makes a good conference, and how it not necessarily what happens during the presentations and in the conference room, but rather the discussions that continue (or perhaps first starts) in the lunch room and during the coffee breaks. This make me wonder, if Atif Kukaswadia has been to the Science Online conferences, which acknowledges exactly that. These conferences are built up following a so-called ‘non-conference’ format and brings more space for the in-between-sessions-stuff. Based on my experiences the ScienceOnline people are the most advanced users of social media before, during and after conferences. For newcomers to social media in conferences it is actually quite overwhelming and a little extreme – but none the less a great eye-opener for the power of social media in conferences.


Cultivating followers on social media when you want to communicate science

How do you explain why social media can be a good thing for researchers to look into? What advantages and what challenges are important to highlight? Next week, I’ll be introducing social media for science communication to the Danish Public Health Sciences Alumni (in Danish). It always helps being quite convinced yourself of what you are talking about, but reading other people’s arguments can also help. Especially, if they are in line with your own experiences.

I was therefore delighted to read a blog post on Nature’s community guest blog, Soapboxscience, by Matt Shipman, a public information officer at North Carolina State University. He writes about using social media (like Twitter and Facebook) and science blogs for taking science to the public.

Building networks takes time

Apart from the simple and convincing argumentation, what I like about the blog post is that Matt Shipman points out the fact that it takes time to build up the necessary network to get the full value of social media. This aspect is not that often acknowledged. My own experience is also that it takes time, and that you need to be patient in the beginning and that it requires some work. Just like you need to be patient when building up networks in real life. As Matt Shipman writes:

“Just because you set up a social media account doesn’t mean that anyone will know about it. You’ll need to take the time to cultivate a following.” 

And how do you do that? Matt Shipman has a few suggestions, which match very well my own experiences.

“You can start by figuring out your desired audience. Who do you want to be following you? Other scientists? Relevant science writers? Potential grad students? […] Once you’ve defined your target audience (or audiences), you can begin reaching out to friends and colleagues who are already online. They can help point people to your Twitter account, Facebook page, etc”

In my experience making searches on e.g. Twitter and looking at who pops up is also a good start for finding out who to follow. And just like looking at the references in a scientific article can give hints on where to find more knowledge, so does it help to look at who key people are following – making chain searchers so to speak.

Getting people to follow you

One thing is finding out who you should follow, getting the relevant people to follow you is also a challenge, and probably a bigger one. Without followers you are missing the whole point of social media. To get full advantage you need to have the relevant people to follow you – and not only that:

“.. if you really want people to pay attention, you need to have something to offer. Content is king, and you need to contribute something to the online conversation. In other words, why should people be listening to you?”

Social media like Facebook and Twitter are good for drawing attention to things, and communicate short messages but not always for more extensive communication:

“Social media platforms can be very limiting. For example, can you define genotype and phenotype in 140 characters or less?

“If you want to use social media to communicate effectively, you need to drive readers somewhere.”

‘Somewhere’ could be an already published article, a new report or an event, but it could also be a blog. Matt Shipman goes on to write about the blog and how it is useful for science communication. I won’t repeat that but encourage potential new science bloggers to read the blog post.

Lots of advice on how to get followers

Searching Google for tips on how to get followers on for example Twitter, lots and lots of websites pops up. For new comers to social media and science, Matt Shipman’s blog post on Nature’s community guest blog, Soapboxscience is a good starting point on why the combination of social media, blogs and science communication is not such a bad idea, but also that it requires some work.


When someone else writes convincingly why scholars should be on Twitter

Sometimes it just seems silly to duplicate other people’s words when they have used just the right phrases and words to say something.

The blog post “How to use Twitter” by PhD student in Molecular Pharmacology at the University of Aberdeen, Heather Doran gave me a little bit of that feeling. By sharing her own experiences, Heather writes about her efforts to get every other ph.d. student she meets to join Twitter! The blog post contains lots of good tips and arguments for why every PhD student and other researchers should get that Twitter account and start using it as part of their academic career. There are also tips to some Tweeters to follow.

So to save words: check out Heather Doran’s blog post “How to use Twitter” (and other posts on her blog Happy Science) and follow her on Twitter @hapsci.


Inflation in teachings on social media in Danish Health care

Judging from the number of courses, guidelines etc. on the use of social media in health care, Denmark is now also becoming aware that there is something to it. The Danish Medical Association just published an advisory guide to their members on how to deal with social media, and “Dagens Medicin“, a Danish newspaper for health professionals, is offering a one-day course on social media in the health sector. An almost identical half-day course is offered by the Medicademy (an international educational program by The Danish Association of the Pharmaceutical Industry) which focuses on how the pharmaceutical industry can use social media in their communication. Both courses come at a quite heavy fee of 2700 DKK per person (475 USD).

A communication expert and case stories

The two courses are very similar in their structure and speakers – and price. Both courses have a broader social media expert as their first speaker. It is not a person from the health sector, but communication specialist Elisabeth Tissot Ludvig, who is director of a private communication and PR company specialising in Health Care Communication. Elisabeth Tissot is also an occasional blogger [in Danish] at The Danish Medical Bulletin, where she blogs about Danish medical doctors’ communication habits.

The two courses offer various speakers from the health sector who according to the programme will share experiences in using social media in relation to their profession. This includes a blogging doctor; a researcher in patient blogs; a nurse who have used social media in recruitment of personal; and a pharmaceutical company’s use of apps in communicating with patients. Through these examples it is the objective of both courses to spread knowledge of social media and its potential role in the Danish health care and pharmaceutical sector.

Focus on legal issues, not much about science communication

At both courses and in the folder from the Danish Medical Association, legal aspects of the use of social media play a mayor role. A lawyer will present legal restrictions in using social media in a health context. The guide from the Danish Medical Association is almost entirely focused on legal issues and advice on what not to do or avoid doing when online. The advice is sound enough, because of course there are issues to be aware of when communication, regardless of what media is used. I miss, however, some words on what social media could be useful for. Examples of benefits of being online as a medical doctor or other health care personnel. The folder seems to be mostly fear driven and not very balanced on potential advantages for doctors to go online.

Twitter, which I myself find to a kind of glue that connects the different kinds of social media and attach it to traditional media, is only briefly mentioned in the course offered by Dagens Medicin. Here Twitter will be presented by a popular comedian. Of course there can be an intention to add a more light and less formal speaker to the programme, but seen from my perspective it is a shame that a health related tweeter couldn’t be invited.

Another thing I miss in the programme is how social media can be used in research and in research communication. Research is an integrated part of the Danish health system and it would have been interesting to have added social media’s role in science communication to the programme. But perhaps that is an entire course in itself…

Regardless, the guide from the Danish Medical Association and the two courses, indicate that social media in relation to health care is an emerging issue also an Denmark. If not among the older generation then surely among the younger generation of doctors, nurses, researchers, public health specialist etc. who have grown up with social media as a natural part of their lives.