The necessity of science communication

I read two articles this week, which I just have to share here on this blog. The two articles are both inputs to the discussion on the role of science communication in general society today.

Self-censorship among vaccine researchersnewyorktimes

The first article “Anti-Vaccine Activists Have Taken Vaccine Science Hostage” by Melinda Wenner Moyer is published in The New York Times and discusses how the anti-vaccine movement have contributed to what looks like self-censorship in parts of the vaccine science communicty and how it seems to be  eroding the integrity of vaccine science.

“Scientists are so terrified of the public’s vaccine hesitancy that they are censoring themselves, playing down undesirable findings and perhaps even avoiding undertaking studies that could show unwanted effects.”

 

Science Journalist Melinda Wenner Moyer, The New York Times

The article gives example from the vaccine science community where researchers feels pressure from their peers not to publish negative results, but also describes the importance of continuesly studying and transparently discussing also the research that touches upon the negative sides of vaccines. The article closes with an encouragement that researchers, who do good science must share their research – even when there is a risk of its meaning being twisted – and not apply self-censorship.  As the writer points out in the conclusion:

“One thing vaccine scientists and vaccine-wary parents have in common is a desire for the safest and most effective vaccines possible — but vaccines can’t be refined if researchers ignore inconvenient data. Moreover, vaccine scientists will earn a lot more public trust, and overcome a lot more unfounded fear, if they choose transparency over censorship.”

 

Science Journalist Melinda Wenner Moyer, The New York Times

scientific americanA cry for help

The other article “The Truth Sometimes Hurts” by Kate Marvel, a climate scientist at Columbia University and the NASA Goddard Institute for Space Studies, and published in Scientific American responds to Melinda Wenner Moyer’s request that scientists continue to share their knowledge, finding and results also when they hurt.

Kate Marvel however points out that even though science thrives on the oxygen of transparency, reality is that doing it is hard! And that scientists (especially in hot topics like vaccine and climate change) often times are up against beliefs, which are not based on science and therefore cannot be refuted by science:

“But outside the confines of the lab, scientists have to operate in an environment polluted with lies and bad faith. Vaccines do not cause autism, but many people believe they do. And because this belief is not based on evidence, it cannot be refuted by science. But charlatans can still use what appears to be the language of science, weaving inconclusive studies and minor effects into a persuasive web of lies and fear.”

 

Climate scientist Kate Marvel, Scientific American

The reality is that communicating science is hard and especially hard for scientists who are by definition trained primarily to be scientists and not communicators. As Kate Marvel points out, very few scientists receive training in communicating science or are taught how to handle it when their words and conclusions are twister or delibrately misinterpreted and misrepresented.

Kate Marvel shares examples from her own area of work, climate change, where the fear that climate change deniers will misuse scientific findings or transparency about uncertainty in climate change projections to push forward their own agenda. She also points out that there are no institutional rewards for communicating science and thus little institutional incentive to allocate time and energy on communicating their work.

She closes her input to the debate with a heart-felt request:

“So I want to approach this with something the stereotypical scientist is not known for: humility. Please don’t just tell us to be honest, help us to understand how to be transparent in an opaque world.  Truth is messy, and lies can be simple and appealing. I may not know what I’m doing, but I’m willing to listen and learn.”

 

Climate scientist Kate Marvel, Scientific American

Make science communication mandatory

I can only agree with Kate Marvel about the need to offer more insight and training to researchers, scientists and scholars on how to communicate science. I enjoy teaching science communication to Ph.d students at the Faculty of Health at University of Copenhagen, but also experience how little they know and how distant the idea of communicating science outside the scientific world seems to many (luckily it’s definitely not all) of them. Having taught a masters course on Public Health Science Communciation to public health students also at University of Copenhagen was inspirering and I wish it could be mandatory for all students to have some training and insight into how to communicate science . Even if it limited in time, it could at least give them insight into what they may encounter and perhaps give them some appetite to dig a bit deeper into science communciation later on and dare to challenge their own fear of communication what they do.

Thank you to both Melinda Wenner Moyer and Kate Marvel for inspiring inputs into the discussions around the role of science communication in today’s society and for highlighting both the importance of science communication, the risks if we don’t and the need for more training and help .


Patient blogs – a useful social media tool?

In preparation for a training I’ll be giving this fall on using social media in national Tuberculosis (TB) programmes, I have been searching for examples of patient blogs to communicate about TB. I thought that there’d be at least a few different examples out there, but either there are not or maybe I’m just not using the correct search words (or there could of course also be an issue with language barriers).

TB and Me

The only real TB dedicated patient blog I have been able to find is an initiative by MSF called TB&Me. It consists of currently 27 personal blogs by current or past multidrug-resistant TB (MDR-TB) patients from all of the world. The blog, which started already in 2011, is meant as a collaborative blogging project where the patients write (if necessary with assistance) about their experiences of living with MDR-TB and the treatment that they receive, which can involve taking up to 20 pills a day for 24 months and suffering many painful side effects from the toxic drugs.

I know that there are other TB survivors that blog, but many of them are more focused on advocacy around TB rather than sharing their own patient experiences. This is for example the case of the this Romanian blog by Paula Rusu (a Romanian former TB patient and journalist).

Improving drug adherence

Intuitively it sounds like a good idea to have patients blog about their experiences, emotions and reflections. It provides an opportunity to add a personal perspective on the disease, which can be helpful to both the patient him or herself as well as other patients and relatives.

A qualitative research study of the TB&Me project published in PLOS One in 2014 found that the TB&Me blogging experience was useful for adherence to DR-TB treatment and viewed as supportive of the treatment-taking process by all bloggers and project staff, it provided support to patients (peer support, shared experience and reduction in isolation) and the blog gave the patients strength and voice.  The authors conclude that “The TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.”

Patient blogging is not new, but it’s not something that I have studied much before and I’m eager to learn more of the experiences from other disease groups. I believe there are many patient blogs related to chronic diseases like diabetes (a list of patient blogs on diabetes type 1 can be found here) and cancer, but it would be great to get some more insight into where to start and learn a bit more of also the potential negative sides of patient blogging, so please do share any insight you might have with me. Also how patient blogs could be part of broader communication and advocacy around TB. I’d love to get your insights!