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Showing posts with label SciComm. Show all posts
Showing posts with label SciComm. Show all posts

Outbreak resources: more expert detail presented simply, to more people, at a trusted site, quickly, and for free...

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Many, many of us have learned a lot about Ebola virus and Ebola virus disease (EVD) over the past 61 weeks - some more than others. 

Some have paid very dearly for their new knowledge and some few have leveraged the event to try and make a buck or draw more attention to themselves or their trade.

Many have been scared - few outside Guinea, Sierra Leone and Liberia have had a real need to be - but fear of this tiny killer is understandable. I stand by my comments on that from back in August when the United States woke up to what had been happening in west Africa for five months, and promptly started freaking out...without evidence of any widespread threat or danger.


Not everyone has a library on everything
For all of the unwanted, unnecessary and often inflammatory commentary, hypotheses, guesses and conspiracy theories, there was some good information to be found about EVD. Sometimes it was only able to be found by academics or others with access to journals that sit behind fee-for-view virtual walls (paywalls). Sometimes the science was too dense for the public to follow - even when they could access it. But most of the time it just took far more digging to unearth the basics than it should have. It would have been good if more of those who could access and interpret that information, had proactively done so.

EVD in west Africa helped generate a lot of publicly accessible descriptive information about some of the technical language of infectious disease outbreaks. But there could be more. New information for public consumption should be...

  • Clear, simple information that can be easily read and shared using today's short, punchy and graphic-laden social media communication tools
  • Information that is quick and easily found or can be found using (way more) friendly search engines. A page of 2,000+ poorly descriptive results returned from a keyword search...is not helpful
  • Broad descriptions about broad topics - not just narrow descriptions for one aspect of one outbreak caused by one virus. We need to explain the wider patterns that are shared among many outbreaks and by many viruses. Ebola virus is not the first bloodborne virus, not the first sexually transmitted virus, not the first virus to spread in vomit and faces or by droplets, or to survive on surfaces, or to mutate, or to have an RNA genome, or to be detected by RT-PCR, or to have its genome sequenced, or to be the trigger for contact tracing, or to have just appeared in west Africa in 2014...etc. Start tying these patterns together to give the public a better sense of what we live with every day, instead of responding to the now and the scary.
  • A single online, well formatted (for multiple devices) site that hosts all this information provided, checked, updated and agreed upon by experts in the fields, written by communicators and hosted by the new and improved World Health Organization (WHO). The world needs a one-stop outbreak info shop that it can rely on. And that shop should be staffed by assistants who are available to answer questions or direct customers to the aisles best suited to their needs. We expect access to information and answers to questions from our phone company, so why not from our World's health experts?
  • Using better citation to acknowledge the reference material in public health information - what is so wrong with letting everyone know what the guidelines are guided by? Anecdotal is not enough.
  • Date stamped to make it clear when it was written and when it was updated. Am I looking at contemporary thinking - or something from 2 days ago before that major discovery/event changed everything we knew about virus X? 
Many public health entities already create pages upon pages of information on each outbreak but some of that is written for people who like to read...a lot...and is in a style that is sometimes too dense and dry with words and phrases that are not well defined. A glossary might also be of use. 

There will always be a portion of the public who seek their news and detail from the loudest and most garish 'news' source. There are also many who would like to be the smartest person at water cooler - but not if that comes at the expense of trying to locate and then wade through reams of technical guff. 


More expert detail, simply presented, to more people, from a trusted site, quickly and for free.

The next 'Ebola' might have a much harder time getting traction in a territory if its population is ready for it, or can get up to speed quickly.
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WHO reconsiders openly wanting to be a new organization

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Yesterday I stumbled across this statement by the World Health Organization (WHO). It's reprinted in full below, but the original version is no longer on the WHO site (more on that in a minute).

It was a powerful human, feeling, mea culpa on the Ebola response along with a very strong and detailed plan to move forward and a fiery desire to be the group that keeps the world safe. I tweeted a few bits of it and stated my respect.


Then I noticed some tweets, including this from @cymeaton indicating that the WHO had released a new and different version.. (also story with more details of the changes, here).
This new revision (copied below the original version) has some nice general changes, removal of contractions, removal of the numbering etc., but is weakened by the deletion of some other phrases leaving it feeling colder and covered by the fingerprints of bureaucracy - something that the first version felt like it was climbing above.

I'm disappointed. 

While I won't delete my tweets from yesterday, I would not have tweeted my respect for this version. Whomever you are that wrote that version - well done. I feel the retention of some of your key parts would have been better received by the world and they show you are indeed ready to move forward, acknowledging that everyone made and makes mistakes, or errors in judgement - that is to human - but that you own those and will seek to do better.
Original Statement 
At time of writing it was found here; some remove but humanising words are underlined

Joint statement on the Ebola response and WHO reforms

Statement by WHO Director-General, Deputy Director-General and Regional Directors, on the Ebola outbreak and response, and reforms to the work of WHO in outbreaks and humanitarian emergencies. 
  1. The Ebola outbreak which started in Dec 2013 became a public health, humanitarian and socioeconomic crisis, with devastating impact on families, communities and affected countries. It also served as a reminder that the world, including WHO, is ill prepared for a large sustained disease outbreak.
  2. We welcome the recommendations of the Special Session of the WHO Executive Board, in particular the proposed assessment of all aspects of the WHO response. Based on the lessons learnt, we commit ourselves to reforms that will enable WHO to play its rightful place in disease outbreaks, humanitarian emergencies and in global health security.

    What have we learned?
  3. We have learned lessons of humility. We have seen that old diseases in new contexts consistently spring new surprises. We have taken serious note of the criticisms of the Organization that, inter alia, the initial WHO response was slow and insufficient, we were not aggressive in alerting the world, our surge capacity was limited, we did not work effectively in coordination with other partners, there were shortcomings in risk communications, and there were was confusion of roles and responsibilities at the three levels of the Organization.
  4. We have learned lessons of fragility. We have seen that health gains �fewer child deaths, malaria coming under control, more women surviving child birth � are all too easily reversed, when built on fragile health systems, which are quickly overwhelmed and collapse in the face of an outbreak of this nature.
  5. We have learned the importance of capacity. We can mount a highly effective response to small and medium-sized outbreaks, but when faced with an emergency of this scale, our current systems � national and international � simply have not coped.
  6. We have learned lessons of community and culture. A significant obstacle to an effective response has been the inadequate engagement with affected communities and families. This is not simply about getting the right messages across; we must learn to listen if we want to be heard. We have learned the importance of respect for culture in promoting safe and respectful funeral and burial practices. Empowering communities must be an action, not a clich�.
  7. We have learned lessons of solidarity. In a disease outbreak, all are at risk. We have learned that that the global surveillance and response system is only as strong as its weakest links, and in an increasingly globalised world, a disease threat in one country is a threat to us all. Shared vulnerability means shared responsibility and therefore requires sharing of resources, and sharing of information.
  8. We have learned the challenges of coordination. We have learnt to recognise the strengths of others, and the need to work in partnership when we don�t have the capacity ourselves.
  9. We have been reminded that market-based systems do not deliver on commodities for neglected diseases � endemic nor epidemic. But we have been encouraged by the desire of the scientific community, manufacturers and regulators to work together in this crisis to develop effective diagnostics, drugs and vaccines for Ebola.
  10. Finally, we have learned the importance of communication � of communicating risks early, of communicating more clearly what is needed, and of involving communities and their leaders in the messaging.

    What must we do?
  11. We will intensify our advocacy with national authorities to keep outbreak prevention and management at the top of national and global agendas.
  12. We will develop the capacity to respond rapidly and effectively to disease outbreaks and humanitarian emergencies. This will require a directing and coordinating mechanism to bring together the world�s resources to mount a rapid and effective response. We commit to expanding our core staff working on diseases with outbreak potential and health emergencies so we will have at least [1,000] skilled staff always available at the three levels of WHO. We will also create surge capacity of teams of trained and certified staff so that we have at least [1000] additional staff available as a reserve force in the event of an emergency.
  13. We will create a Global Health Emergency Workforce � combining the expertise of public health scientists, the clinical skills of doctors, nurses and other health workers, the management skills of logisticians and project managers, and the skills of social scientists, communication experts and community workers. This Global Health Emergency Workforce will be made up of teams of trained and certified responders who can available immediately. A key principle must be to build capacity in countries, with training and simulation exercises.
  14. We will establish a Contingency Fund to enable WHO to respond more rapidly to disease outbreaks. We must ensure adequate resources � domestic and international � are available BEFORE the next outbreak. We welcome the proposal to create a pandemic financing facility.
  15. We will change our way of working. Disease outbreaks demand a command and control approach � very different from the consensus building culture of most of our work in global public health. We commit to clarifying our roles and responsibilities within health emergencies, and organize ourselves to deliver on these roles. We will develop new systems for human resources, planning, logistics, information management and other areas that are so critically important in health emergencies.
  16. We will establish partnerships with other organizations such as OCHA, UNICEF and WFP and other partners, to create a scalable operational response capacity for large scale disease outbreaks
  17. We will strengthen the International Health Regulations � the international framework for preparedness, surveillance and response for disease outbreaks and other health threats. We commit to strengthening our capacity to assess, plan and implement preparedness and surveillance. We will scale up our support to countries to develop the minimum core capacities to implement the IHR. We will establish mechanisms for independent verification of national capacity to detect and respond to disease threats.
  18. We will develop expertise in community engagement in outbreak preparedness and response. We will emphasise the importance of community systems strengthening and work with partners to develop multidisciplinary approaches to community engagement , informed by anthropology and other social sciences.
  19. We will communicate better. We commit to provide information on disease outbreaks and other health emergencies as they occur, rapidly and transparently. We will strengthen our capacity for risk communications and for community engagement.

    We call on world leaders to take the following steps
  20. First, take disease threats seriously. We don�t know when the next major outbreak will come or what will cause it. But history tells us it will come.
  21. Second, remain vigilant. This Ebola outbreak is far from over, and we must sustain our support to the affected countries until the outbreak is over, in the face of increasing complacency and growing fatigue. We must continue to maintain a high level of surveillance. Ebola has demonstrated its capacity to spread � it may do so again.
  22. Third, engage to re-establish the services, systems and infrastructure which have been devastated in Guinea, Liberia and Sierra Leone. This recovery must be country-led, community-based, and inclusive � engaging the many partners who have something to contribute � bilateral and multilateral partners, national and international NGOs, the faith community, and the private sector.
  23. Fourth, focus on prevention. This means investing domestically and internationally in essential public health systems for preparedness, surveillance and response, which are fully integrated and aligned with efforts to strengthen health systems, and included in the scope of development assistance for health. It means working across sectors � health and agriculture in particular. These resources will be substantial, but as the well-known aphorism goes, prevention is better (and less costly) than cure.
  24. Fifth, be transparent in reporting. Accurate and timely information is the basis for effective action. Speedy detection facilitates speedy response and prevents escalation.
  25. Sixth, invest in research and development for the neglected diseases with outbreak potential � diagnostics, drugs, and vaccines. This will require innovative financing mechanisms, and public-private partnerships.
  26. Finally, hold us to account. We commit ourselves to ensuring that WHO is reformed and well positioned to play its rightful role in disease outbreaks and in global health security generally. Some have said the world needs a new organization to be created. We agree, and we want WHO to be that organization.
New version
At the time of writing it was found here

WHO leadership statement on the Ebola response and WHO reforms

The Ebola outbreak that started in December 2013 became a public health, humanitarian and socioeconomic crisis with a devastating impact on families, communities and affected countries. It also served as a reminder that the world, including WHO, is ill-prepared for a large and sustained disease outbreak.

We, the Director-General, Deputy Director-General, and Regional Directors of WHO, are making this commitment of collective leadership to Member States and their peoples in line with recommendations made by the Special Session of the Executive Board on Ebola held in January 2015. We have taken note of the constructive criticisms of WHO�s performance and the lessons learned to ensure that WHO plays its rightful place in disease outbreaks, humanitarian emergencies and in global health security.

What have we learned?

We have learned that new diseases and old diseases in new contexts must be treated with humility and an ability to respond quickly to surprises. Greater surge capacity contributes to a flexible response.

We have learned lessons of fragility. We have seen that health gains � fewer child deaths, malaria coming under control, more women surviving child birth � are all too easily reversed, when built on fragile health systems, which are quickly overwhelmed and collapse in the face of an outbreak of this nature.

We have learned the importance of capacity. We can mount a highly effective response to small and medium-sized outbreaks, but when faced with an emergency of this scale, our current capacities and systems � national and international � simply have not coped.

We have learned lessons of community and culture. A significant obstacle to an effective response has been the inadequate engagement with affected communities and families. This is not simply about getting the right messages across; we must learn to listen if we want to be heard. We have learned the importance of respect for culture in promoting safe and respectful funeral and burial practices. Empowering communities must be an action, not a clich�.

We have learned lessons of solidarity. In a disease outbreak, all are at risk. We have learned that the global surveillance and response system is only as strong as its weakest links, and in an increasingly globalized world, a disease threat in one country is a threat to us all. Shared vulnerability means shared responsibility and therefore requires sharing of resources, and sharing of information.

We have learned the challenges of coordination. We have learnt to recognise the strengths of others, and the need to work in partnership when we do not have the capacity ourselves.

We have been reminded that market-based systems do not deliver on commodities for neglected diseases � endemic nor epidemic. Incentives are needed to encourage the development of new medical products for diseases that disproportionately affect the poor. The scientific community, the pharmaceutical industry, and regulators have come together in a collaborative effort to vastly compress the time needed to develop and approve Ebola vaccines, medicines, and rapid diagnostic tests. In future, this ad hoc emergency effort needs to be replaced by more routine procedures that are part of preparedness.

Finally, we have learned the importance of communication � of communicating risks early, of communicating more clearly what is needed, and of involving communities and their leaders in the messaging.

What must we do?

We will engage with national authorities and request them to keep outbreak prevention, preparedness and response management at the top of national and global agendas.

We will develop the capacity to respond rapidly and effectively to disease outbreaks and humanitarian emergencies. This will require a directing and coordinating mechanism to bring together the world�s resources to mount a rapid and effective response. We commit to expanding our core staff working on diseases with outbreak potential and health emergencies so we will have skilled staff always available at the three levels of WHO. We will also create surge capacity of teams of trained and certified staff so that we have a reserve force in the event of an emergency.

We will create a Global Health Emergency Workforce � combining the expertise of public health scientists, the clinical skills of doctors, nurses and other health workers, the management skills of logisticians and project managers, and the skills of social scientists, communication experts and community workers. This Global Health Emergency Workforce will be made up of teams of trained and certified responders who can be available immediately. A key principle must be to build capacity in countries, with training and simulation exercises.

We will establish a Contingency Fund to enable WHO to respond more rapidly to disease outbreaks. We must ensure adequate resources � domestic and international - are available before the next outbreak.

We recognize that emergency situations demand a command and control approach and we commit to seamless collaboration between headquarters, regional offices, and country offices. Better WHO systems for rapid staff deployments, data collection and reporting, expansion of laboratory services, logistics, and coordination were developed as the outbreak evolved. These systems will be institutionalized.

The massive international response revealed the unique strengths of multiple partners, including UN agencies. We will build on these partnerships, concentrating on capacities that are most critically needed under the demanding conditions of emergencies.

We will strengthen the International Health Regulations � the international framework for preparedness, surveillance and response for disease outbreaks and other health threats. We commit to strengthening our capacity to assess, plan and implement preparedness and surveillance measures. We will scale up our support to countries to develop the minimum core capacities to implement the IHR. We will establish mechanisms for independent verification of national capacity to detect and respond to disease threats.

We will develop expertise in community engagement in outbreak preparedness and response. We will emphasise the importance of community systems strengthening and work with partners to develop multidisciplinary approaches to community engagement , informed by anthropology and other social sciences.

We will communicate better. We commit to provide timely information on disease outbreaks and other health emergencies as they occur. We will strengthen our capacity for outbreak and risk communications.

We call on world leaders to take the following steps

First, take disease threats seriously. We do not know when the next major outbreak will come or what will cause it. But history tells us it will come. This means investing domestically and internationally in prevention and in essential public health systems for preparedness, surveillance and response, which are fully integrated and aligned with efforts to strengthen health systems, and included in the scope of development assistance for health.

Second, remain vigilant. This Ebola outbreak is far from over, and we must sustain our support to the affected countries until the outbreak is over, in the face of increasing complacency and growing fatigue. We must continue to maintain a high level of surveillance. Ebola has demonstrated its capacity to spread � it may do so again.

Third, engage to re-establish the services, systems and infrastructure which have been devastated in Guinea, Liberia and Sierra Leone. This recovery must be country-led, community-based, and inclusive � engaging the many partners who have something to contribute; including bilateral and multilateral partners, national and international NGOs, the faith community, and the private sector.

Fourth, be transparent in reporting. Accurate and timely information is the basis for effective action. Speedy detection facilitates speedy response and prevents escalation.

Fifth, invest in research and development for the neglected diseases with outbreak potential � diagnostics, drugs, and vaccines. This will require innovative financing mechanisms, and public-private partnerships.

This is our commitment; together we will ensure that WHO is reformed and well positioned to play its rightful role in disease outbreaks, humanitarian emergencies and in global health security.
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Editor's Note #22: Two years old today..

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On March 27 2013, around the time of Easter and the school holidays, I gave in to the urgings of my wife, to try this blogging thing. 

And today it's two years later and now very clear to me that writing for fun, but based around what I know in science, will be something I do for many years to come. 

At times it's been tough - or maybe other pressures made it feel tougher than it was - and I've considered stopping and have at times paused. As hard as it was though, I found myself wanting to chime in on stuff and could not stay away. I still find that weird, but it must have been a part of me all along - I just hadn't noticed it until after I turned 40'ish. I'm a bit slow sometimes. 

Turns out that I enjoy writing and I needed a hobby that I enjoy and that helped inform and generated such unexpected positive feedback. Everyone needs that I think. Bit of a shame that the typos don't get fewer but such is life. 

It also turns out that blogging made me resign from my job of 23 years - which just so happens to co-occur with this very date. No, of course my resignation was not for such a simplistic reason, but blogging was one of a few major factors that set the process in motion. In particular, blogging about outbreaks of Middle East respiratory syndrome coronavirus (MERS-CoV), avian influenza A(H7N9) virus and the Ebola virus disease epidemic in West Africa. It was that last one that really had the greatest impact on me though. 

From blogging has come more interactions with the media (something I am now a firm believer in more scientists needing to do-communicate what we do to our stakeholders), new collaborations, papers, strange discussions with affiliate Institutes about why they'd rather me not link them in print or press to this press or these papers since I had no research funding for these viruses, friendly discussions with very high ranking Health officials, advice to documentary makers and then an invited role helping out my State's public health team. That one was the kicker. The feeling that the virology information and patterns I'd spent years accruing and piecing together in my head, and now blogging about and drawing graphs and graphics to describe, could be used for the greater good completely ruined me. But in a good way. It triggered many realisations about my current role, some were familiar to me as I had been living with them daily for years, others I had felt in the corners of my mind but they were too intangible and just wouldn't coalesce into anything that would describe itself to me and yet others that were patterns I simply didn't see. Told you I was a bit slow sometimes.

You could of course dismiss all of this as the rantings of a failed scientist who - despite an h-index of 32, 80 papers (15 with >100 citations), >400 citations per year for the past 9 years, 14 book chapters, roles as an Associate Editor at the Journal of Clinical Virology, a Section Editor at Biomolecular Detection and Quantification and an Editorial board for Viruses as well as having continuous competitive research grant funding since he was awarded his PhD in 2003 until 2014 - had missed out on achieving most of his recent grant applications. Go right ahead.

I wanted to use what I'd learned for the greater good. Yeah - as a comic nerd that makes even me cringe a little. But that's where I've been heading, knowingly or not, for some years now. Well, soon I'll be a part of a team that cam help me to do that. 

So I wish you a Happy 2nd birthday little VDU. You've helped me to grow and to learn at the rate of a human two year old. And in doing so, I've met and made friends with a lot of great people around the world. For such tiny things, viruses can have such an impact on us. Quite the hobby.
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Useful Ebola virus disease graphics...

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Good graphics can be really helpful to convey information quickly - and no-one has time to read words anymore right?


The one above came from CNN [1] and presents the number of cases that have been treated in the United States prior to the 11 or so contacts/associates of the last unidentified case being evacuated.

The second one, above, came form the European Centre for Disease Control and Prevention (ECDC).[2] These guys make excellent plane travel/infectious disease maps. This one shows that the UK has kept pace with the US in medical evacuations or repatriations of EVD cases, or suspected cases, from the hotzone in west Africa.

References..

  1. http://edition.cnn.com/2015/03/16/us/new-day-five-things/index.html
  2. http://ecdc.europa.eu/en/healthtopics/ebola_marburg_fevers/Pages/medical-evacuations.aspx
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Words of wisdom from a Master....

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Prof Vincent Racaniello (he of the TWiV netcasts and Virology blog) took another step towards being the Yoda of contemporary virology communication using social media.

Earlier this morning (my time), while live Tweeting from the Australian Society for Microbiology's (#2014ASM) annual meeting in Melbourne, Prof Racaniello imparted these words of wisdom. This came out during a Tweet exchange with @NewProf1 about how to find some balance as a scientist engaging in social media communication in addition to having a life, succeeding at work...and personal hygiene.


Interesting how close those words are to Yoda's...
 No.
Try not.
Do. Or do not.
There is no try.
Oh, and if you are at the ASM this year - Tweet something for crying out loud!! 

Get into it. 

Create a Twitter account right now - just use it for work related stuff and follow a few people. Social media is, among other things, a great way to get another view of science. And if you engage with the public a little, just around your field of interest to start off with, you might be amazed at how positive and personally rewarding it can be. Not to mention how widespread your reach can become compared to a standard journal publication paradigm. Think of it as another way to look at impact. You may even pick up some collaborations.

At the very least remember, teaching is a great way to learn.
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