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!


Public health science communication is back

Yes, Public health science communication is back again – and in more than one way. First of all, after a way too long time of silence on this blog – Public Health Science Communication 2.0 – I intend to be a bit more active in the time to come. There are lots of good articles, blog posts and experiences from the past couple of months to follow-up on, and now a bit more time to do so.

Public health science comm pageThe other public health science communication which is back soon (takes off from early February) is the short Masters course ‘Public Health Science Communication’ at the Institute of Public Health Sciences, University of Copenhagen. In the fall of 2012 I was given the opportunity to develop and teach the course (read more about it here) to students of public health sciences. However, being located in Bonn and busy with many other things in the spring to come the course will now – in a new and great version II – be orchestrated by my colleague from Medical Museion, Associate professor Louise Whiteley. Louise has a Masters in Science Communication from Imperial College London and is one of the coolest people I know in Science Communication. She was a great help in developing the first version of the Masters course Public Health Science Communication, so version II will surely be great.

I would have loved to take on the course myself, but am happy that I get to teach one session on Public health risk communication. It’s a topic I have always found super interesting so it fits me well. My younger sister Caroline has enrolled in the course, which means that I will get to teach my own sister. A bit surreal, but hopefully someone who can give me some unfiltered feedback.

Anyhow, it is great to be back on the blog and I look forward to blog away, with my posts also featuring on Medical Museion’s great website.


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:


Social media challenges ‘old’ media in Boston bombings coverage

That social media plays a key role in emergency situations is evident. Lots of events have proven it’s efficiency and it’s multi-purpose qualities. However, this has definitely not been clear to everyone. Then a tragedy occurs in Boston and it becomes clearer and clearer that social media cannot be brushed aside.

Pop HealthThere are already lots of great blog posts, Twitter discussions etc. about the role social media played (and is still playing) in the events related to the Boston bombings, so I won’t try myself to replicate those. A post that gives a good overview and is written by a public health professional is Leah Roman’s blog post on the blog Pop Health. She goes through some of the key themes of social media in the emergency response, ranging from Immediate Public Safety Concerns and Instructions over Investigation, Reconnecting people, to the functioning of social media as a Resource for Journalists, and it’s role in Mental Health & Support Resources.

idisasterAnother good post about the social media in the boston bombing is on the blog iDisaster 2.0 that shares links to other great articles about the role social media played during the horrific aftermath and presents three observation on use of social networks, particularly Twitter, by the Boston Police Department. Also worth a read.

New media challenges old media

In the last couple of days, old media and new media are both reporting of how the later beat the first during the Boston events. Especially CNNs failure to keep up with social networks in being first with the news is being covered and discussed (among other places in this article in the NY Times and in Danish in this article in Politiken). The dynamic between the traditional media and new social media is interesting, and the relationship between the two will certainly continue to evolve. Without knowing the details of the discussion back in time when radio and later on TV came into being I’m sure that there were similar discussions on the then new media challenging the old ones. I look forward to seeing how it develops, and how emergency management manages to make use of what is still categorized as ‘new media’ and its relation with traditional media.


Social media and disaster management

Social media and public health is a diverse field, and there is always some new corner to explore! These days I am increasing my knowledge on the use of social media for disaster management and coordination. The reason for this is that I next week will be giving a lecture on the topic to students at the Master of Disaster Management at University of Copenhagen.

It has been exiting to dig into a new field and to experience how social media really presents great new opportunities, but of course also new challenges. Since I haven’t previously worked specifically with disaster management, I choose a few weeks ago to ask my Twitter followers for help on finding good literature and resource people in the field. And once again, Twitter didn’t let me down.Tweet

Blogs, website and hashtags

I got a lot of great inputs to blogs, websites, Twitter chats, hashtags and people to follow and hook up with on Twitter (a big thank you to all of you who responded!).

The blogs are a good starting point, especially since most of them offer great links to other resources. The most helpful so far have been the website/blog Social Media 4 Emergency Management. From here there is access to wikis, archives of Twitter chats (#smemchat), videos, blogs etc. on social media and emergency management. The only ‘problem’ with the website is that there is almost too much information.

Another super helpful resource is the blog idisaster2.0 (primarily run by @kim26stephens). It have lots of informative blog posts as well as a good bibliography of selected academic and government resources on social media and emergency management.

Own experiences with disasters and social media?

When I was asked to give the lecture, I hesitated for a moment, because what did I know about emergencies and disasters? Apart from my solid knowledge of social media in public health, including some superficial insight into its role in disasters, I had never had anything to do with disasters or least of all experienced it… However, the later is not true, I quickly realised. I have actually to some extend been in an emergency setting and I have in fact experienced the role of social media in a disaster situation.

Earthquake in Japan in 2011

japan earthquake

I was in Japan, when the big earthquake, subsequent tsunami and finally the Fukushima nuclear plant crisis occurred in March 2011. Being relatively far from the epicenter of the disaster (I was based in Kobe in the Kansai region), I wasn’t directly surrounded by flooded buildings, elevated radiation risks or other immediate danger. But I was surrounded by potential danger, by worried friends and family in Denmark and by Japanese friends and colleagues with close relatives in the affected areas.

helpjapannowLooking back on my Facebook timeline, I can now see how social media actually played an important role for me during the emergency. I used Facebook to assure others that I was okay and kept them updated on my situation. I started following the Danish Embassy in Japan’s Facebook page through which they several times daily shared information about risks, advice on how to act and the organisation of potential evacuation. I encourage the mobilization of emotionally and financial support to Japan by sharing links and QR-codes. And I experienced how a Japanese colleague of mine after days of no contact with her sister living in Sendai where the tsunami hit, finally through Facebook got in contact and found out that her and her were safe…

So yes, I have actually experienced a disaster, and experienced how social media can be used in this kind of situation. I plan to share my experiences as a case with the students next week and hope that this real life experience can contribute to the understanding and some discussions.

Your help

Although I already got great tips from people on Twitter, I am still the happy receiver of inputs on social media and emergencies/disaster management. Suggestions on discussion topics, assignments or any other ideas on how to involve the students are more than welcome as are links to guidelines, scientific articles etc.


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.


The magical world of blogging

I love blogging. It surprises myself, because I really hadn’t predicted that having a blog would be something I’d get hooked on – or even less did I expect all the things it would bring with it. Extensive networks, new opportunities, great connections and new horizons.

Especially the last couple of weeks have shown me the potential of what a blog can do. I have been contacted by people who through my blog have found me and have thought that my perspectives on science communication were worth a direct contact. Thus I have recently had a super interesting discussion over the phone about online collaborative tools with the man behind www.irrationalscientist.com and communication expert at Sanofi-Pasteur, I have met a kindred spirit in science communication, herself a blogger on the topic on www.signsofscience.org and with a passion to connect people interested in science communication and last been contacted by the University in Lund, Sweden asking if I’d be able to do a lecture on Science communication to a class of master students in Public Health. To this comes the people who comment on the blog, send me emails or tweet me.

Every contact has been super interesting and every time I am amazed of what only one year of blogging can lead to. Its is truly amazing.

Recipe for success?

Maybe it is due to my recent very positive experiences that I earlier this week decided to walk out (and I really rarely do this) of a seminar entitled ‘How you get success with your blog’ organized by the Danish Journalist Association. Okay, the key speaker was a beauty blogger, so not exactly the same blogging topic as mine, but nonetheless still a blogger and the seminar was described to be focused on blogs more generally. So what provoked me so much that I in end decided to leave? Well, first of all I must say the blogger’s presentation style gave me red spots. I felt she had an ability to trash everyone that wasn’t her or didn’t do like her – both on blogs or in the general media. Maybe it was her personality and presentation style that made me leave, but at the same time I must admit I disagreed with her on so many issues, issues she presented as the absolute truth about blogs.

The power of the right ones and oneself

My mayor point of disagreement was that the objective of a blog is not always to get as many readers or page viewings as possible. Of course it is motivating to see that people are reading your scribbles but I’d much rather prefer have a few of the right readers rather than masses of people. The beauty blogger was however obsessed with number of page viewings and unique visitors. This is of course of great importance if you’re trying to sell ads (which she was) but the presenter generalized this to the extreme and made it seem like it was the ultimate goal of any blog to have thousands of readers, likes etc. She almost stated hat if you couldn’t get high number of readers you might as well quit blogging. I couldn’t disagree more. Yes, I like that I have readers, and I do get a kick out the days when many have clicked their way through to my blog, but it is not the soul success criteria. To have contacts like the ones mentioned above is to me the real success. As well as all the things I learn as I am writing and sharing my thoughts and views with the world. The power of the blog is in my view not the number of people who read it but that it is the right ones and that you get so tremendously a lot out of writing it (regardless of it ever being read).

I look forward to my continued scribbling on this blog, on further developing the contacts I have made and explore new ones. The world of blogging really is magical!