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


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.


The responsibility of public health people to communicate

Public Health is a broad field, and finding ones place in the palette of colours that public health consists of is tricky. I have been around many corners ranging from international health, health statistics and information systems to planning of care, health policy and governance. And lately public health communication. I don’t know if I have found my shelf, actually I kind of hope not, but I must say that the communication side of public health is crawling under my skin. Perhaps because it seems such a natural part of public health and in many ways a neglected part.

As I blogged about earlier this month, I have been reading “The Panic Virus” by Seth Mnookin. It’s a book that takes you through a historical journey from the invention of vaccines to its successes, failures and not least the role communication played/plays in both. Ranging from the communication done by experts, the media to laypeople and celebrities. The book is well written and based on a great amount of research. I finished reading it yesterday and despite having enjoyed it a lot it also left me with a slightly discouraged feeling. It is a perfect example of how panic can grab a bunch of worried parents, about how ‘Mommy instinct’ becomes superior to scientific research and how the media at times can put aside rationale in order to follow the conflict, the emotional story and forget the premises of scientific research which makes giving absolute ‘yes or no’ answers extremely difficult. My discouragement was very much: Well what do we do about this, how can we take on mommy instincts and heart breaking stories and scientists who do not apply to scientific standards? Risk is difficult to communicate, communicating all the things we don’t know makes risk seem even more scary. So what do we communicate, how much do we communicate and in what way? And where does public health communication specifically fit into all of this?

I then realised that public health communication is perhaps exactly where some of the communication in the whole vaccine story went wrong. The media attention was taken over by people who took their starting point in individuals – in their own nine patients, their own child or grandchild or their own gut feeling. Even though organisations like the CDC, whose focus is population health, of course did and are doing their best to communicate the benefits of vaccines both to individuals and societies and draws attention to what the majority of the research findings is telling, I believe it is to some extend is still the failure of public health communication that may be to blame here. As I was taught from the very first day in my very first class in Public Health, Public health is exactly about the population perspective and we should be obliged to be much better at communicating this. Public health people should be the holders of that expertise – it is not the responsibility of the medical doctors or the statisticians or sociologists. We should be better at communicating risks and what they mean and be better at explaining what it is we don’t know. Most of public health research, whether it is done by numbers or by qualitative methods is about finding trends, causation in large groups etc that we can utilise to ensure or improve the wellbeing of the individual as well as the broader population. And we need to be better at communicating this. Not only to the public but also across scientific disciplines, across levels of society from decision makers to funders of health initiatives etc.

Taking my own public health training as my reference, I must admit, that I was not given much guidance on the communication side of public health. I was told that my expertise is that I have an insight into many disciplines and can bridge these disciplines, but how actually to carry out this bridging function I wasn’t given tools for. I hope I can be able to ‘catch up’ on this skill and that I can share my experiences with others. To a start I recommend people to read “The Panic Virus” and learn what the consequences can be if we don’t pay attention to the communication side of public health sciences.