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.


Quick follow-up on Twitter Surgery

To those of you who have been reading my posts about the Live-tweet brain surgery, which was performed at the Regional Epilepsy Center at Aurora St. Luke’s Medical Center (Aurora Health Care) in Milwaukee, Wisconsin, I myself have been wondering how the patient is doing and what experience came out of the whole Twitter event.

Peter Balistrieri, Manager of Digital Communications at Aurora Health Care have been so kind as to share some of the experiences on my previous post in the comments section and to those that haven’t read that far I thought I’d just link to 10 tips for tweeting a successful brain surgery. The tips are very hands-on and seem specifically directed towards others considering taking up live-tweeting from the surgery room. But there are some interesting aspects also for people outside the world of surgeries and hospitals. For example I find the recommendation of developing a relationship with the patient and doctors and surgeons prior to the Twitter surgery interesting. This is not only of benefits to the tweeters but also to the followers and gives a story-telling feeling to something otherwise very clinical and sterile.

That said I do miss a little bit of post-twitter-surgery-follow-up. Firstly, how is the patient, Geoffery, doing? We were all right there with him on the operation table, and curiosity bids me to wonder how he is doing today? And secondly, I am ver curious to know how the medical staff perceive the whole Twitter situation? Who followed the event and did it have the intended effect? What have the responses been? From patients, from colleagues, from patient organisations? Lots of question comes to mind and the only online follow-up that I have been able to find so far has so far been the before mentioned 10 lessons learned and an official announcement of a successful surgery with a short note that Geoff is doing well and that we’ll hear more from him 2+ weeks. I’m looking forward to that update. But also an update from the medical staff and perhaps for some reflections on the educational effect of the Twitter event, especially when putting on the ‘science communication’ perspective, which I would argue to some extend be relevant for an event like this one.


Attending an awake brain surgery – through Twitter

Yesterday, I attended a neurosurgery of the brain in an epileptic patient. I was right there next to the patient, the surgeons, Dr. Morris and Dr. Dagam, and all the other staff. I could see how the layers of tissue were slowly removed to expose the brain and I know what the patient, who was awake during the operation, said. I really was there. However, I had not washed my hands thoroughly before, I was not wearing a mask. Actually, I was sitting in Plaza Nueva in Bilbao with a coffee and my laptop, taking advantage of free wi-fi. And I was on Twitter…

By chance, I came across this tweet:

Although I found it a bit over the top, I must say it got me curious, and before long I was actually pretty drawn to the live-tweets.

From the Regional Epilepsy Center at Aurora St. Luke’s Medical Center (Aurora Health Care) in Milwaukee, Wisconsin, a live-tweet of an awake temporal lobectomy (read more about temporal lobectomy here) on the epileptic, 43-year-old Geoffery Nestor took place on September 27, 2011. The objective of the surgery was to remove a portion of the brain which causes the epileptic attacks. It is the most common type of epilepsy surgery and is also the most successful type.

Being quite certain that the surgeons had their hands full, the tweets were written by people from the hospital’s Social Media & Digital Communications, however present in the room and in close contact with both the patient and the doctors.

The tweets were in some cases accompanied by photos and varied between:

  • technical descriptions (eg. “Dr. Dagam anchors the dura to the cranial wall using sutures, allowing full & safe access to brain http://yfrog.com/khxtbdoj”),
  • descriptions of what was being done to the patient to keep him comfortable and stable,
  • but also comments from the awake patient Geoff (eg.”Geoff says to Dr. Morris: “Tell my wife I love her. And that this isn’t as bad as I thought it would be.“).
  • In addition, and some of the tweets gave general statistics on the number of epileptic patients in the US, information about the operation and instruments used etc. All in all a good variation.

Using the hashtag #ahcneuro it was of course possible for the followers to comment, retweet etc. It was interesting to see for example how epilepsy patient organisations were retweeting and encouraging their followers to follow the surgery. Questions and comments raised to the tweeters were in most cases responded to which gave a very good and interactive feeling.

Although this was my first experience with live-tweeted surgeries, it is not the first of its kind. I haven’t been able to find out which was the first Twitter-broadcasted surgery, but a minor robotic cancer surgery in Henry Ford Hospital in Detroit in January 2009 seems to have been one of the first. Since then knee surgeries have been tweeted, kidney operations and most likely other operations have made it to Twitter. The phenomenon has in some cases even been given a name : Twurgery. Live-twitter surgeries have even made it to the television screens in an episode of Grey’s Anatomy.

Judging from the website descriptions of the live-tweeting surgeries, the premise behind the events have been to give people an inside look at how an operation is performed, but in some cases also to display the advances that have been made in modern surgery. For example the Ohio State University Medical Center highlighted to following reasons to live tweet from a knee surgery:

  • First, the health system wanted to publicize the availability of the procedure, which it calls (pdf) MAKOplasty, to patients and referring physicians.
  • Second, the broadcasting and tweeting were another means of providing education to OSU medical students, particularly those interested in orthopedic

So far, I haven’t been able to identify live-twitter surgeries in hospitals outside the US, and I’m quite convinced that such an event have surely not taken place in a Danish operation room. Will it come? Well, I can’t really see why it shouldn’t. Of course things can always be miss used and there needs to be a clear objective and it does of course require consent from all parties involved. Learning from their experiences, some of the hospitals who have already tested live-tweeting have shared best practices and lessons-learned, which other hospitals might want to check out before sending tweeters into the operation rooms.

To me, if done in a proper manner, this is an interesting way to do science communication. Getting not just medical staff but also the rest of us into the operation room once in a while, is not such a bad idea. People working with public health also need to know what actually happens in an operation room. And with Twitter we can be there without being in the way, faint over the amount of blood or ask questions at inconvenient times. In stead we can be sitting on Plaza Nueva in Bilbao, Spain drinking a coffee..