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.


Online course in Public Health Emergency Risk Communication

In just a few weeks I’ll be teaching a class on Public Health Risk Communication, as part of the Public Health Science Communication course at University of Copenhagen. Despite the topic being big enough to cover a whole course in its own, it will with 90 minutes available only be possible to give a brief introduction to Risk Communication and public health. To compensate a little for this I have therefore been searching for possibilities for further studying, which I could recommend to the students.

Online course: Emergency Risk Communication

University of Washington

One of my findings is an online course in Emergency Risk Communication offered by the Northwest Center for Public Health Practice, University of Washington. It is free and takes only an estimated 2,5 hours (thus it is also mainly an introduction to the topic). I decided to take the course yesterday before adding it to my list of “further readings and materials in Public Health Risk Communication”.

Background information about the course

The course is very practice-oriented and less theoretical. The developers’ approach to the course and described target audience is that “if you work in public health, during a crisis or emergency, you will be likely to become a risk communicator, even if your job description does not include public information or media relations”. Therefore the course’s main objective is to teach how to plan for an emergency, create effective messages, and interact with the media and community in times of crisis. This is clearly illustrated in the below learning objectives:

After completing this course, you should be able to:
  • List some common reactions exhibited by the public during public health emergencies
  • Identify some effective communication strategies that can be used during public health emergencies
  • Communicate with the news media more effectively during public health emergencies
  • Work with the community more effectively during periods of heightened emotion
  • Participate in planning processes that can help your organization be better prepared for communicating during an emergency

A well crafted and structured course

All in all I found the course quite useful and very well put together. I felt it gave me a good basic insight into some of the main components of Emergency Risk Communication. It took me about 2 hours to finish, but it has materials for extensively further studying. Throughout the different modules it is full of links to guidelines, templates, check lists, background literature, resource websites etc. useful in developing an emergency risk communication plan or strategy. All the links are also collected in an easily accessible Toolkit, which makes the course even more hands-on-oriented and user-friendly.

Another great aspect of the course is that is makes use of many real life examples and includes for example interviews with public health professionals who suddenly found themselves involved in emergency risk communication. You are presented with a situation similar to what they experienced and is asked what actions you would take. Afterwards you are then presented with their actions and the outcome of that. This works very well and helps in keeping one’s interest and attention. The course also makes sure to use many different cases of public health emergencies covering all from outbreak of infectious diseases, food safety issues, environmental health risk, to natural and man-made disasters. Again, great to keep one’s attention and making it relevant to people working in many fields of public health.

Social media and Emergency Risk Communication

A very positive aspect of the course was, seen from my perspective, that social media and its role in emergency risk communication is given much attention. Many examples of its use is presented and it is consistently mentioned throughout the different modules of the course. Apart from being of course a super important aspect to include it also gives you a feeling of the course being up-to-date.

In conclusion, it’s definitely a course worth spending 2,5 hours on. As said it is not very theoretical or academic oriented, but it has great references if one feels like digging into more of that, and is relevant for students as well as public health professionals proned to get involved in public health emergencies in one way or the other. You get a nice little diploma when passing the final assessment test and can, if relevant also apply for official credits for the course.

Emergency risk communication course


Conference on Communication, Medicine and Ethics (COMET) in Switzerland

As member of the European Public Health Association (EUPHA) I receive a monthly newsletter with relevant Public Health news from the region. I have previously criticized EUPHA for their lack of focus on public health communication (see blog post “European Public Health Association and the missing communication category”).

Eupha

I maintain my critic, but must also congratulate them when public health communication does sneak its way into for example their newsletter.

Thus, in the January 2014 newsletter under Upcoming Courses and Conferences attention is made to the Conference on Communication, Medicine and Ethics (COMET), which will take place in Lugano, Switzerland 26-28 June 2014. The conference aims to bring together communication researchers from different disciplinary backgrounds, ranging from healthcare specialities to the human and social sciences.

The first Conference on Communication, Medicine and Ethics (COMET) was hosted by the Health Communication Research Centre at Cardiff University, UK in 2003 and was attended by more than 200 participants from 20 countries. Based on its success COMET has now established itself as an annual interdisciplinary, international event.

COMET is described as using a problem-oriented approach, and places special emphasis on the dissemination of high quality research in interpersonal, mass communication, and practical ethics which is directly relevant to healthcare practitioners.

The 2014 conference will focus especially on the dissemination of ongoing research in Doctor-Patient communication studies, health communication in the media, as well as practical ethics which engages directly with healthcare practitioners. Looking at the list of proposed topics and keynote speakers, it does seem like especially the doctor-patient communication will be given much attention, but I’m happy to note that themes like “Communicating Risk and Uncertainty”; ” Interprofessional Communication and Hospital Management Systems” and “Media and Health Communication” also figures on the list.

Assessing myself unlikely to attend, I do hope that the conference will set up a hashtag for Twitter and encourage social media activity during the conference, so that a broad audience (including me) can be reached.

The organisers of the conference accepted proposals for either panels or paper presentations (oral or poster) within the main themes up until 31st January 2014, so unfortunately the deadline has been passed, but I look forward to seeing the complete programme once it becomes available.


#SM4PH – A Twitter chat on social media & public health

I actually thought I had blogged about it before, but a search through my posts shows me that the #sm4ph Twitter chat has been neglected. So hereby making up for that.

#sm4ph#sm4ph is a Twitter hashtag dedicated to exploring aspects of social media use and how it affects public health, including the academic field of Public Health and the public’s health at large. Until recently it was a monthly chat (although not really active in the second half of 2013) but since January 2014 it has been upgraded to a weekly chat. It is moderated by Jim Garrow, who is director of Digital Public Health in the Department of Public Health in the City of Philadelphia and works like other scheduled Twitter chats: A moderator choses (often based on inputs of other chat participants) a number of questions for discussion, which are then discussed at a designated time. The #sm4ph chat takes place every Wednesday at 9pm Eastern Time (which in central Europe time means at 3am (!))

Due to the time difference I have never been able to take part in the chat, but as with other similar chats an archive is stored and made available through a website (in this case www.phsocmed.wordpress.com). In addition, the hashtag is regularly used, also by myself, for tweets which relate to the topic of social media and public health. Doing a regular check-up on #sm4ph on Twitter is a great way to get updated on new studies, initiatives and people (mostly US-based) related to social media and public health.

#sm4ph twitter logoShould I next Wednesday night suffer from insomnia, I might try to join the chat. If not I will most likely be checking in on the Storify summarizing the chat afterwards. Of course the topic discussed is not always of interest to me, as my main interest is in public health science communication, but still it is a good way to keep up to date on ideas, initiatives and innovations in using social media for public health.


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:


Teaching Marie Curie PhD students

I might worry a bit excessively before and be afraid that I won’t be able to give an interesting talk or teach students anything, but then while I’m doing it and afterwards I realize that I really enjoy it. Teaching.

Its been a year now since the public health masters course in Public Health Science Communication at University of Copenhagen took off. Since it finished in December 2012 I have only taught science communication a few times. Last week I got a new dosage of interaction with students to discuss the communication of science.

MariecurieactionsI was invited to give an introduction to science communication to a group of 14 PhD students under the Marie Curie Actions Initial Training Networks (ITN)The students all had a background in biology (or similar) and were just into the second year of their PhD. Most of them (if not all) were deep into lab science and were working at the smallest possible scale of the human cell and genetic materials. In my experience lab scientists often represents one of the most challenging group of researchers when it comes to arguing for why the should communicate science. Not because they don’t recognize it as necessary and useful, but primarily because they find it almost impossible to explain what it is they do. Overall these students were not much different.

Focus on you!

Why botherI had three hours at hand on what was equal to a Friday afternoon for the 14 students who after two weeks of presentations, social events and classes where looking forward to returning to their labs and weekends. Combined with the premises that this was an introduction to science communication I decided to try to make the class as fun and as interactive as possible and centered around the students themselves. My four main headlines around which the class was structured were therefore:

  • Why is it relevant to communicate your research?
  • Who would be interested in hearing about what you do?
  • How can you benefit from communicating your research?
  • Are there any tricks to making science communication easier for you?

We did a lot of common brain storming of why one should communicate science, who is involved in science communication and where it takes place. The students were actually pretty good at this at a general level, but when it came down to their own research it seemed like they ran into the barrier that their research field is just so difficult to explain… I hope that at the end of the session the students had gotten some new perspectives on how you can approach communication of your research. For example that research is not just about the facts, theories, hypotheses and results but just as much about curiosity, frustrations, hope, processes, challenges, dreams and collaboration. All things that can be easier to explain than the genetic description of what determines the structure of a receptor protein on a cell involved in the development of fat cells. Or at least easier for the outsider to relate to.

Practical writing tips

abstraction ladderI chose also to allocate some time to some practical communication (mostly writing) tips. Little things that can make writing a little easier, which I learned in School of Journalism. I tried to include some fun examples with little YouTube clips (e.g. The Great Sperm Race as an example of the power of comparison) and sound clips (e.g. Radiolab’s podcasts and experimenting with sounds). And then of course I tried to open their eyes to social media as something that is not only useful in their private life but could play a role in their research and research communication! When I mentioned the word ‘blog’, I saw many rolling eyes, but arguing that even peer viewed journals like Nature uses blogs seemed to legitimize the blog just a tiny bit.

All in all it was great being back in my teaching mode and I hope that the students got something out of it too. I look forward to my next teaching job which is in Copenhagen at Informations medieskole, where I’ll talking to Danish researchers about social media’s role in research and science communication. More on that to follow.