The challenges of communicating Tuberculosis research and risks to decision-makers

Over the past year I have on a number of occasions been so fortunate to work for the World Health Organization’s Regional office for Europe (WHO/EURO) on various communication tasks related to Tuberculosis (TB).

TBincidenceEurope2011

Although we in Europe tend to worry mostly about non-communicable diseases and many perceive infectious diseases as something we have pretty much under control, Tuberculosis is actually a big problem in many countries of the region. Especially the incidence of Multi-Drug Resistant TB (MDR-TB) and Extensively Drug Resistant TB (XDR-TB) is worrying – to me actually a bit frightening. Incidences of MDR-TB and XDR-TB in Europe are the highest in the world, and do not only present a problem to the countries mostly affected (se figure) but in a globalized world with lots of mobility also a growing problem in the rest of the region. And as the name implies, treating (and thus controlling) the disease is becoming increasingly difficult as our current range of medicine is no longer proving effective.

Tuberculosis as a Public Health Risk Communication example

TuberculosisSo why bring up this issue on a blog focused on Public Health Science Communication? The answer is simple: Because it is a good example of the complexity and challenges of communicating public health science to divers audiences. Next week I will as mentioned earlier be giving a short lecture on public health risk communication to a group of public health students at University of Copenhagen, and I have been asked to try to integrate some ‘practical experiences’ with risk communication. My plan is to use tuberculosis as an example. Unfortunately, I can’t bring many solutions to the challenges, but my aim is to draw attention to some real life, practical obstacles to convert scientific public health knowledge to action.

The big challenge: Reaching decision makers!

In my assignments for WHO I have not worked specifically with risk communication, but having attended several meetings and contributed to a number of WHO reports I have gained an insight into the many challenges in TB control, the people involved and been struck by TB experts’ difficulties in communicating what science deems necessary to control the disease, including the risks of not acting or acting incorrectly, to the people responsible for making key decisions and allocating resources to it.

As with any other disease the findings and outcomes of TB-related research has to reach many different audiences: TB-patients, relatives of TB-patients, the general public, the media, health care workers, nurses, medical doctors, laboratory technicians, health care planners, policy makers, politicians etc. What is necessary and relevant to communicate differs of course depending on who you are trying to reach and the mechanisms to reach them are naturally also different.

I will in this blog post not reflect too much on communicating risks to patients and relatives to TB patients nor the general public, but draw attention to the challenges which TB experts face in communicating scientific findings, risks and arguments to public health decision-makers – ranging from senior doctors, hospital managers to politicians. This is an area I feel is often overlooked when talking about public health science and risk communication and definitely a challenge for TB-control in Europe. There are many books, courses, guidelines etc. on how to reach individuals and the general public, but it is at least my impression that literature and discussion on how to reach decision-makers is much more limited or at least difficult to find.

Some examples

For almost all the TB-related meetings organized by WHO, which I have attended the problem of getting messages and identified risks through to the decision-makers has been brought up. Just a few examples:

  • Laboratory and biomolecular specialists know what is needed in terms of laboratory tests, which are the most efficient (also in term of costs) and how for example testing TB strains for their susceptibility to different drugs is essential in controlling TB and the risks that arise from not doing so. They know what resources are needed in terms of staff, training and maintenance of equipment. Their problem: Explaining the highly complicated (even to me) techniques, their use of very technical language and abbreviations, their lack of communication training in general and risk communication specifically, their lack of direct access to communicate to and with decision makers. The result: under-prioritization of the laboratory needs in TB programmes and/or half solutions without proper maintenance of machines, continued training of staff etc. All contributing to increased risk of spreading TB – especially X/MDR-TB.
  • Researchers in TB, Heads of national TB programmes, international advisory organisations etc. know and have evidence for the importance of moving towards out-patient care of TB patients rather than relying on placing them in hospitals for the duration of their treatment (which can be move than 12 months). Not only for the sake of the individual patient but also for the public in general. Their problem: Communicating this knowledge convincingly to policy-makers and senior doctors is difficult in an Eastern European context where the old ways of the Soviet times, where hospital treatment was the preferred option, are still present. There seems to be a lack of opportunities or ideas on how to communicate with decision-makers and a fear that advocating for fewer hospital beds and more outpatient care will only lead to fewer resources for TB. In addition, they are in many countries up against stigma towards TB patients and the fact that TB often affects people with low social status (migrants and prisoners) and therefore not very attractive for politicians to spend time on. Form how I see it the experts lacks skills in communicating their knowledge effectively, partly due to lack of understanding of the incentives of decision-makers to go into this area. The result: Reluctance to speak up. Non-effective communication and status-quo for TB-patients’ treatment and care which again only risks to fuel the epidemic.
  • Researchers in TB, Heads of national TB programmes, international advisory organizations etc. know the importance of involving civil society in TB control and especially in explaining risk, risk preventive strategies etc. Their problem: difficulties in getting messages and knowledge across to civil society organization (if they exist), and find a common language to communicate in. Trouble gaining political support for the establishment of civil society organization and, if these already exist, lack of success in coordinating messages and missions. The result: Missed opportunities of being a joint voice that together can work to convince decision-makers to react to the risks of a more widely spread TB epidemic and have them make the right decisions. Waisted resources due to uncoordinated efforts

Acknowledging the role of science communication

The above examples are just a few of the communication related problems I have encountered and they may to some extend be specific to the European Region. The trouble is that they are in my experience actually often not articulated as communication problems, but rather as problems of securing funding, getting political support, engaging civil society, old-fashioned doctors etc. But from my perspective a lot of this really has to do with a lack of ability to communicate public health research, including public health risks to decision-makers.

So how do we deal with this? Well first of all, I guess it is a matter of acknowledging that communication is essential to convert scientific knowledge to actual action – also in TB control. It’s difficult to pursued decision-makers of the importance of paying attention to the TB situation and react accordingly, but there is a need to look into how it can be improved. Improved science and risk communication does in no way solve the problem on its own, but I do believe that a better understanding of how TB risks can be communicated, and an understanding of the position and incentives of the audiences (in this case decision-makers) can contribute a great deal. The experts need to been given some training and insights into science communication, so that can contribute to the discussions themselves – it is not enough to just hire a bunch of communication people to take care of it. Science communication theories and research have a lot to offer. The link just has to made and prioritized already from future experts enter into the academic training in universities etc.


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:


A perfect place to pick-up arguments for why scientists should be on social media

An Introduction to Social Media for Scientists‘. I have wanted to mention this article published in PLOS Biology ever since it came out in April 2013, but somehow never got around to it. But as I reread it earlier this week, I was reminded how this article must be mentioned on a blog like mine.

An Introduction to Social Media for Scientists is written by Holly M. Bik and Miriam C. Goldstein from University of California Davis and University of California San Diego and is an excellent place to start for researchers considering trying out social media or for enthusiasts of social media for science communication who are in search of good arguments they can use to persuade others of why they must set up a Twitter account, start blogging or establish some other form of online presence.

Research Benefits and flowcharts

Supported by lots of examples (with links provided to many of them!) the authors list a number of ways in which social media can benefit both the scientist and the scientific work. In short form these are:

  • How online tools can help improve research efficiency;
  • How being visible on social media helps track and improve scientific metrics;
  • How social media enhances professional networking; and
  • How online interactions have the potential to enhance ‘‘broader impacts’’ by improving communication between scientists and the general public.

flowchart

They go on to address different kinds of social media and how they can be used, and provide advice to new users on how to get started. A useful (and fun) feature of the article is a flowchart that can help newcomers find out which media might be most relevant for them to try out and solution to common online communication fears.

Acknowledging the stigma

Throughout the article the authors mention the stigma which is often attached to online activities. They acknowledge how many researchers are skeptical towards the media and regards it as a waste of time and a distraction from true scientific work. In a response to this the authors have set out to address some of the many misconceptions and misinterpretations of what social media can contribute with. And in my opinion it works. One could argue that they don’t spend much energy on the risks or disadvantages of social media for science communication (of which there are of course several), but they are plenty to be found elsewhere.

Need for formal training

Social media among scientists is quickly growing and will eventually become more and more natural for scientists to use (if not sooner than as the younger generation whom have grown up with social media enter the research arena). But until then there is a need to train on researchers and scholars on the potential of social media in academic work. Both to address the many misconception and skepticism but also to avoid researchers use it inefficiently or inappropriately. I could therefore not agree more with the authors:

“Social media and internet-based resources are increasingly ubiquitous. Thus, there is a pressing need for scientific institutions to offer formalized training opportunities for graduate students and tenured faculty alike to learn how to effectively use this new technology”.


What does Britain’s Science Media Centre (SMC) think of social media for science communication?

smcMost people working with science communication will probably have heard about Britain’s Science Media Centre (SMC) and perhaps also about its front woman Fiona Fox. In case you’ve never heard of it or can’t really remember what it is about the scientific journal ‘Nature’ recently published a news feature on SMC and Fiona Fox which gives a good overview of the centre, its concept and the critic it faces.

Science Media Centre (SMC) is an independent press office that works to get scientific voices into media coverage and policy debates. By doing so the aim is to improve the accuracy with which science is presented to the public. The Centre works with:

  • journalists by providing them with information about science and its related disciplines; and putting them in contact with relevant scientists
  • scientists, engineers and other experts by supporting them in engaging with the media and by creating more opportunities for them to get their voices.
  • Press officers by supporting them when they are working on complex science, health and environment stories.

In addition, the SMC provides expert advice and evidence on issues relating to science in the media.

I won’t repeat the background or work of SMC further on this blog but instead refer to the Nature article or their Science Media Centre website. 

Social media and SMC?

Reading the Nature article with the interview with Fiona Fox and looking at SMC’s website it strikes me how reflections on the use of social media for science communication seems completely absent. It is not mentioned once in the article and on the website they link to their own Twitter account and Fiona Fox’s blog, but other than that there is no reference to social media as a tool or as medium for science communication.

Even in their Top tips for media work to help scientists to work with the media social media is not mentioned with a word, despite the fact that social media provides an excellent opportunity for scientists to communicate their research. Neither is it mentioned in their 10 best practice guidelines for reporting science & health stories. Of course these two guidelines are meant to be a tool on how to prepare for meeting the scientist/journalist and interpret correctly what information they are looking for or sit with, but none the less social media is only growing in influence also among scientists, so advice on checking out if the researcher is blogging about his or her field or using other social media could be worth including. As could advice to scientists on using social media to communicate themselves and use this communication channel as a resource to guide journalists too.

In the Nature article, Fiona Fox says that the part of her job in which she takes the most pride, is convincing once-timid scientists to join the SMC database and speak out. “A real triumph for us is getting a scientist who has worked for 30 years on a really controversial issue and has never spoken to the media,” she says. I wonder if she also encourages them to take communication into their own hands and start communicating through social media as well or if she mainly thinks of them talking to journalists who then do the communication or sign up on the SMC scientist roster….. All in all, I guess I’m quite unclear about what SMC and Fiona Fox thinks of social media for science communication.


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.


Creating a niche of public health science communication

When you sit in your own little world working on your things, it can be hard to assess how all the different loose ends relate to each other and whether there is any direction and overall frame for what you do. But then an external observer (in this case a journalist) comes along, interviews you for 45 minutes, based on which he picks 7 quotes and writes a short article. And Voila! All of the sudden it sounds like you are super focused, which you probably are, it’s just see hard to see for yourself.

This is what happened to me recently. I agreed to act as a ‘case’ for a journalist writing an article about the opportunities in Denmark to get government support for taking additional education. When I chose to do a one-year degree in Journalism, I was so lucky to be approved for SVU (the State’s Adult Education Support) which meant a monthly allowance during my studies equal to 80% of unemployment support.

The article was published this week in the magazine of the The Association of Danish Lawyers and Economists (and lots of other academics, including people with degrees in Public Health Sciences). Its in Danish, which may prevent lots of my readers to read it, but none the less: below is the article (you can also read it on page 26-27 in DJØFbladet).

DJOEF

What was pleasant for me to read was that the journalist, based on our talk actually assessed that I had created a niche for myself:

“Today, Nina has created a niche for herself where she mixes the methodologies from both of her tool boxes [public health sciences and journalism & communication, edit], when she communicates in her field or teaches at the Faculty of Health [at University of Copenhagen]”.

A field of Public Health Sciences and communication, or Public Health Science Communication. The sound of it feels right to me, and I guess its time to embrace and articulate the niche more to myself and in my introduction of myself to others. I guess it also shows that I wasn’t completely off, when I some time back chose the to name this blog Public Health Science Communication 2.0.