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.

2 thoughts on “The challenges of communicating Tuberculosis research and risks to decision-makers

  1. Masoud Dara

    Dear Ms Bjerglund.

    While agreeing on the importance of communication with the public and policy makers in every public health field, I believe your statements regarding tuberculosis example are rather generalized. The purpose of the work you did with us at WHO Regional Office was to consolidate technical reports for the experts in the field. WHO Regional Office and partners have extensive exprience in the field of communication with the public and policy makers which you seem not to be aware of. Should you wish to learn more in this field and get a better insight, please feel free to communicate with us and our communication officers. We would be glad to share with you some vivid examples of the past and ongoing communication work in this field.

    Thank you and best regards,
    Dr Masoud Dara
    Programme Manager
    Tuberculosis and multidrug resistant tuberculosis
    WHO Regional Office for Europe

    • Thank you for your relevant comment. I am fully aware of WHO and their partners’ commitment to and acknowledgement of the importance of communication with the public and with policy makers and I congratulate you on this commitment. As you rightfully comment I am not up to date on all the work WHO does on communication in TB and am interested to learn more about this, so I thank you for the invitation.

      My reflections in the blog post were rather meant as an attempt to draw attention to the challenges, which scientists, technical experts and public health professionals encounter when having to communicate their findings and recommendations to public health decision-makers – regardless of whether we are talking the area of TB, cancer treatment & prevention or health information systems building. These are all topics, which I have worked with and where I, as a trained public health professional myself, have been faced with my own limitations in passing on scientifically based knowledge to decision-makers. Decision-makers who do not necessarily have the same public health background and whose incentives and responsibilities are naturally and rightfully different from mine. My blog post is therefore not meant to criticize the communication work by WHO and partners. Actually for TB in Europe I think WHO does a great job in e.g. integrating social media in your communication strategies, developing best practice documents in an easily understood language etc. All activities, which in my view are important in reaching decision-makers.

      My message is that apart from involving communication experts in passing on the findings of public health research to decision-makers there is a strong need in general to equip public health researchers and technicians to feel confident and effective in entering into communication themselves. This would perhaps also help public health researchers to become more aware of when the barriers they encounter are also related to science communication challenges. This is of course not an easy job and it is something, which I believe should be addressed as early on as in the formal university training of public health and other health professionals. Are we successful in making science communication an integrated and natural part of public health research and training we could end up with very powerful public health communicators all to the benefit of public health.

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