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Greetings from the 99nicu HQs

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About this blog

the unofficial 99nicu blog! Thoughts, ideas and opinions piling up while working in the 99nicu HQs

Entries in this blog

Stefan Johansson

I subscribe to the small Youtube channel Science Showcase curated by Andrew Maynard, a very enthusiastic researcher!

Science Showcase collect video clips with scientific content aimed for a broader (public) audience. There is a contest going on and the best video will win 2000 USD.

Just wanted share two interesting clips that are sort of relevant :) for neonatal staff. The first video is about epidemiology and its basic concepts. As you know, there are tons of clinical studies in neonatal medicine based on observational data, many of which suffer from major limitations as researchers did not really grasp some basic concepts how to handle their data... In the first video, there is one mistake though - the illustration of confounding is not entirely correct, instead the video illustrates mediation which is different thing. Small mistake though, as the error in the video is rather that the arrow is flipped 180 degrees. See and find out what I mean ;) 

The second video is about Big Data, a coming major thing in neonatal research as we get access and collect more and more data. The video is about genetic data, but the same principal idea ("so much data you don't know how to handle it") applies to health register data, and the richness of data that could be tanked down from from our monitors, ventilators etc.

Enjoy!

 

 

Stefan Johansson

First of all, my sincere thanks to everyone involved in the 99nicu Meetup, delegates for attending, speakers for giving great lectures, and partners for support!

Despite a lower number of delegates than we had planned for (we did not pick the perfect dates for the Meetup...), I think we managed very well. We needed to downsize and slimline a lot, including changing the venue. But, content was king :) thanks to great lectures, and all interactions and networking.

Given the great feedback we had from delegates, we are committed to continue with this IRL forum for the 99nicu members. Stay tuned for information about the next Meetup, preliminary scheduled for April 2018 in Vienna.

Almost all lectures were videorecorded and they will be added over the summer on the Meetup page herehttps://99nicu.org/meetup2017/ 
Right now you can see David Sweet lecturing about RDS management and Rebeccah Slater lecturing about pain in preterm infants.

The only downside was the financial results, not yet definite but estimated to be a loss of ~5000 USD. Despite "the pain to open the purse" and our original plan to raise funds for IT work for this web site, I believe we shall regard this first meeting as an investment for future Meetups.

We will also be trying to crowd-fund to cover some of the deficit. Those who value the videos as a learning experience are able to make a small donation.

That was all my reflections for now. Until we meet in Vienna, see you here on 99nicu.org :) 

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Stefan Johansson

There is now only 24 hours until until the 99nicu Meetup starts. The roll-up arrived in time :)

Today, I and @Francesco Cardona are printing and packing delegate folders, preparing USB-sticks and getting snacks for the welcome reception tomorrow night. 

We are very excited to meet some of you tomorrow IRL, it will be a great meeting!

Now back to our work here in the HQ's!

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Stefan Johansson

There's a lot going in at the 99nicu Headquarters right now, as we prepare for the 99nicu Meetup starting on Monday 12/6.

USB-sticks and lanyards in preparation :)

Really looking forward to the meeting.

Depending on how things run, we may twitter semi-live, and we will also video-record as many lectures as our memory cards allow. It won't be pro-quality but good enough to view and learn.

Ciao for now! Stefan

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Stefan Johansson

During final preparations for the 99nicu Meetup (yes, there are still empty seats, so you can still register :) ), we have discussed how to think out-of-the-box for future Meetups.

Is it really the best idea for us to run by the classic conference format and setup? Given the experience for this years Meetup, maybe not. Especially since regular meetings are connected to larger financial risks, and 99nicu is still an project that runs on philanthropic fuels.

One idea is that the 2018 Meetup would be a more crowd-sourced event, and much much cheaper, like #FOAMed but IRL. In addition to one or two high-profiled keynote speakers, the program would include lectures by attending delegates, who volunteer to give talks on a subject they suggest themselves. I have heard so many great lectures by fellows and young consultants and believe we should get a fantastic program with a great variety of topics.

However, as you know there is no free lunches, a small fee to cover lunches :) would still be needed. But without any real budget work, I think a full three day CME-accredited meeting should be possible to run for ~150 euros/USD. Delegates contributing with a lecture should of course be coming free of charge. And naturally, all delegates would need to cover and arrange their own travels and accommodation.

Just some thoughts from the 99nicu HQs! Please share feedback below.

Stefan Johansson

As I wrote in a previous blog post, I am involved in a very exciting, sort of a medical underground project, about providing GMP-produced probiotics for preterm infants.

The non-profit company Neobiomics will provide a probiotics product in early 2018, fulfilling specific needs for preterm infants. Non-profit refers to that any potential revenue is re-invested in next generation products or leads to a price reduction. The idea is to have a self-propelling business, without commercial interests.

Due to rigorous quality standards (GMP + "Infant grade") and small production batch size we estimate a price of 3 euros per stickpack, i.e. the monthly cost will be around 90 euros/infant. Given larger batches (more people use the product), we expect the price to drop in the future.  

To make the final internal decision on setting up the production line and produce the first batch, we need to gather information on potential use of this product.

If you are interested to use the Neobiomics Probiotics product, “from the community – to the community”, please respond to a few upcoming questions that you find on this URL: https://www.surveymonkey.com/r/neobiomics

It takes about 1-2 minutes to respond.

Stefan Johansson

For the 99nicu Meetup, not only the venue but also the budget is down-sized :) So, there won't be funding for the kind of web cast we originally planned. 

Instead we plan to use Periscope, the live streaming service that (I think) is a Twitter-owned service.

It seems from the Periscope test run below, that the image quality from using a smartphone is not superb (despite having the latest model!) but if you plan coming to the 99nicu Meetup and are experienced with Periscope Producer, please drop me a PM or an email.

PS. The video is cropped... go to here https://www.periscope.tv/w/1ynJOWYbnaWJR to view it with the full width

Stefan Johansson

Maybe we were a bit too optimistic about the 99nicu Meetup, when we booked a big and fancy venue :)

However, we will not be 200 people on the meeting, or at least, we cannot take the risk NOT becoming 200 people.

While you will still be able to book accommodation at the Clarion Hotel, we will run the conference in a smaller aula for 80 people at "my hospital". The aula (i.e. our hospital) is within 1200 meter walking distance from Clarion Hotel.

So, in short, the same great program in a place that will allow great interactivity!

What about our plans to make a web cast of the meeting... well, we plan to use some service like Periscope. Or some other DYI solution. Simple, free!

See you in Stockholm!

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Stefan Johansson

I would like to open a secret box of mine :)

Like many others, I have been trying to get hold on a probiotics product for the preterm infants I care for. For years.

I discussed the lack of a suitable probiotics product with Philipp Novak, founder of the orphan drug start-up company Orphanix, and together we set out on a mission - to provide a probiotics product specifically designed for preterm infants. In a non-profit business model, "from the community - to the community"

Since early 2016, we have been working with this project, framed within Neobiomics AB, our non-profit company registered in Sweden.

Thanks to our supportive CSR partners, we have reached the final stages of the project. The product will go into production according to GMP and in an FDA-approved facility during Q4-2017.

Stay tuned...!

 

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Stefan Johansson

As you may have noticed, we have opened the registration for the 99nicu Meetup 12-15 June. I hope many of you will be able to come! Click here for more infor!

We got some feedback from a member in an African country about the fee for the meeting, which is 5600 SEK (excl VAT) corresponding to ~630 USD, and whether we had plans to add a differentiated lower fee for members coming from middle- and low-income countries.

I really wished we could offer a reduced fee but to with a limited number of seats and to cover the costs for the venue, lunches, speakers' travels etc-etc, we need to charge this fee as the general cost level is this high in Sweden. Further, 99nicu is still a project based on volontary work and without funds (and viable business model, but that's another story...). In other words, we have none backing our budget in case of a deficit, and are pressed to go break-even financially.

The better news are though that we plan to video-record all lectures and will make those available through 99nicu.org. Given funding, of course!

Stefan Johansson

As planned before the end of 2016, we have completed the program for the 99nicu Meetup in June 2017. You can find the program on this page, where we will also post the registration link around the 20th of January 2017. However, we have already the first two members registered who wanted to spend remains of educational funds for 2016 :) 

I look forward very much to this meeting, the program is great and it will be a joy to meet you IRL!

Stefan Johansson

I am waiting to board the flight from Stockholm to Philadelphia, to attend the 3rd Evidence-Based Neonatology (EBNEO) conference. Although being biased (as part of the organizing committee), I think the meeting will be great! You can follow the meeting on www.ebneo.org, on the hashtag #ebneo2015

And, I think the EBNEO Society, the principal organizer of the conference, has an important mission: to increase the knowledge about evidence-based neonatology, and how to apply its principals in neonatal medicine. That also includes understanding of the pitfalls, that "evidence" is not binary, and that we can and need to do much more research and development to further improve care.

I recently wrote a column about diagnostic testing in the Swedish Medical Journal (Swe. Läkartidningen).
http://lakartidningen.se/Opinion/Reflexion/2015/09/Simtur-i-diagnostikens-djupa-vatten/#comments

I got a comment in English implying that EBM is in conflict with the old-school notion of being a good doctor. That is not the case, def not in neonatal medicine where the caring for babies and families, from a humanistic point of view is central in our daily practise.

My point is not that EBM should replace the humanistic side of medicine. I believe that our caring for patients, from a humanistic perspective, operates on another scale than the issues of accuracy and efficacy of diagnostics and therapies. And, unless we learn to question those latter domains of medicine, we will be lurking around in the same muddy waters as during the 19th century, even if we are committed, empathic etc. In other words, we can still be good doctors and treat patients well, and at the same time develop our skills to offer patients things that work. And, those most educated patients, they are probably most easy to convince that "doing everything" is sometimes a waste of their time and resources.

Stefan Johansson

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As Internet is everywhere (sort of), 99nicu.org has become a truly global network!

 

From Google analytics we could see that people browsing 99nicu the past month (May 9 - June 8) comes from all over the world.

 

The final goal for our outreach is Greenland and countries in Central Africa.

Stefan Johansson

I know - many of us want less emails... But the emails from Evidence Updates are great!

Evidence Updates (a collaboration project by the BMJ Group and McMaster University) assists your reading of new research by grading articles by "Relevance" and "News-worthiness". For example, this trial on D-vitamin supplementation of preterm infants showed up in an email alert, an article I had missed otherwise.

 

1. You need to Register (here!)

2. Choose your clinical interest ("Pediatric Neonatology", I guess)

3. Set a minimum score for new articles you want to read about (set a higher minimum score to get fewer emails :) )

4. Watch your inbox!

 

Link to like: Evidence Updates.

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Stefan Johansson

If you need to show images of common and less common physical findings, the "Link to like" is the photo gallery compiled by MD Janelle Aby, at the Stanford School of medicine. Perfect for teaching of students and fresh fellows.

 

I used it myself today when we discussed nose deviations of the newborn, and I could illustrate differences between a nose septal dislocation and the much more common septum deviation due to the fetus having the nose "stuck" in the uterine wall.

 

The photo gallery is "semi-closed": you will be asked to submit your email address to view images, and then await the email with an URL that gives you a 24h access to the photos.

 

Link to like: Photo gallery, Newborn nursery @ LPCH / Stanford

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Stefan Johansson

I just want to say Happy Holidays to everyone, on behalf of the whole 99nicu Team!

We don't share any New Year's promises for 2014, but there are exciting news in the pipeline.

Besides polishing corners off the new software, we have plans for at least one educational activity... :)

 

Sincere thanks to everyone contributing with questions, expertise and experience in the forums!

 

Best wishes for the New Year!

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Stefan Johansson

Do we not read and talk about research findings more often than we critically discuss methods that led to the findings we discuss?

Trained in clinical epidemiology, I often believe we should discuss methods more, especially before we move into processes of changing clinical protocols on treatments and diagnostic methods. EBM!

Nature published a very nice article about how to interpret research claims. The idea was rather to aim the article towards non-scientists but I think their advice is worth to high-light for a medical audience. ( and read the article in full text here)

The 20 tips are...

  1. Chance cause variation (results can be due to chance)
  2. No measurement is exact (as we didn't know)
  3. Bias is rife (it certainly is)
  4. Bigger is usually better for sample size (yes!)
  5. Correlation does not imply causation (we all know this, but we tend to forget that)
  6. Regression to the mean can mislead (it does)
  7. Extrapolating beyond the data is risky (and set patients at risk)
  8. Beware the base-rate fallacy (it is hard to diagnose uncommon conditions)
  9. Controls are important (or rather, they are essential, and it is essential to select controls right)
  10. Randomization avoids bias (or at least reduces bias)
  11. Seek replication, not pseudoreplication (research needs to replicated)
  12. Scientists are human (and therefore im-perfect)
  13. Significance is significant (but confidence intervals are more important than p-values)
  14. Separate no effect from non-significance (abscence of evidence is not evidence of abscence)
  15. Effect size matters (but remember that effects tend to decrease with study size, i.e. the world is not as good as it seems to be in small trials)
  16. Study relevance limits generalizations (i.e. don't generalize findings among 33-weekers to 23-weekers)
  17. Feelings influence risk perception (and that's why we tend to be more afraid in a plane than in a car, despite the higher death risk to drive)
  18. Dependencies change the risks (some factors or events are related, in additive or multiplicative ways)
  19. Data can be dredged or cherry picked (see #12)
  20. Extreme measurements may mislead (and usually do not have a single cause)
Stefan Johansson

Back in the early Internet days, Portals with link collections were hot and big business. Today, we use search engines and "google" whatever we need to know. And, we have learned the URLs to the sites we use most often by heart.

 

But, there are still a some really good web based resources that is worth to be promoted and high-lighted. That's my idea with a series of posts with "Links to like"

 

First out is neonatalresearch.org, a professional and yet personal blog by professor Keith J. Barrington, neonatologist and clinical researcher in Canada.

 

Keith J. Barrington is writing about and commenting neonatal research. By subscribing to his new posts* on the or following the blog on Twitter, you will feel up-to-date and enlightened.

 

Link to like... http://neonatalresearch.org :)

 

*how to subscribe: visit the web site and submit your email address in the "subscribe" widget in the left sidebar

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Stefan Johansson

Although there are still things to polish on 99nicu.org, I am relieved that the web site is back on-line again.

 

With time, the technology became out-dated and we came to a point where we had to do something to vitalize and update 99nicu.

 

I am certain that the new software we use for 99nicu will improve your experience.

However, as content is king, the vitality of 99nicu will rely on activity by all members making up this community.

 

Our move to a more solid ground, technology-wise, will be followed by other initiatives too. For example, we plan some educational activities, new EBNEO conferences, and new collaborations with other professional partners.

For a bright future of 99nicu, we also need look into a models for funding of maintenance and development.

 

That's all for now :)

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Stefan Johansson

Take a moment and visit www.neoknowledge.org, a freshly new web site with neonatology content.

On of the 99nicu members, associate professor Gautham Suresh, working at Dartmouth Hitchcock Medical Center in Lebanon/NH, USA, started this e-resource. It has only been online for a few months but already contains lots of useful information.

The web site is principally a portal. One of the great features it the collection of educational videos. The video clip on endotracheal intubation of newborns is among others very useful for doctors in training.

http://www.neoknowledge.org/endotracheal-intubation/

We wish the best of luck with this project!

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Stefan Johansson

I write this while waiting at the Istanbul airport, on my way home to Stockholm.

Still full of impressions from the 2nd EBNEO conference that ended earlier today.

 

The conference was originally planned to be held in Cairo, Egypt, but in the last minute we took the decision to change to a venue in Istanbul. We worried about that the current social and political instability in Egypt could interfere with the conference. Although such a risk was probably very small I think most speakers and delegates had understanding for our precautions.

 

The venue for 2nd EBNEO was the Gonan Hotel in Istanbul, a very nice hotel close to the Ataturk international airport.

 

During 2.5 intense days, we could hear in lectures covering a wide range of topics. Naturally, the focus of the conference was evidence-based clinical care of newborn infants, but we also learned more about the basic science of preterm brain damage and got new insights the fetal-neoantal transition. Importantly, we also heard about follow-up care and long-term outcomes of high-risk infants. As we put so much efforts and resources after delivery, we have an equally strong obligation to put efforts and resources in follow-up care.

 

The 2nd EBNEO conference was not broadcasted on the web as the 1st conference (still available here), but we did our best to live-tweet the most important content. Take a look at the @ebneo twitter feed!

 

Before I finish (and board the plane to Stockholm) I would like to, on behalf of the EBNEO Founding Board, to thank:

 

 

  • Hesham Abdel-Hady and Abdel-Rahman El-Mashad, for being President and Secretary General for the 2nd EBNEO conference
  • ICC, the conference agency, for all practical work and not the least for taking a great financial responsibility for all arrangements
  • all speakers and all delegates for coming and for sharing expertise, comments and questions

 

 

The EBNEO project will now travel across the Atlantic. Professor Haresh Kirpalani will be the president for the 3rd EBNEO conference, and it will be held in Sept 2015 in Philadelphia/USA. I am already confident that the 3rd EBNEO will be as succesful as this conference in Istanbul.

 

Subscribe to get future updates about the details of the 3rd EBNEO conference!

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Stefan Johansson

I am on the way to the 2nd EBNEO conference, waiting in the airport to board. :D

As you probably know, the 2nd EBNEO conference was scheduled in Cairo/Egypt. Due to current circumstances, the conference was moved in the last minute to Istanbul/Turkey.

I am very glad and grateful towards the conference president Hesham Abdel-Hady (aka hehady here at 99nicu). It is really a major achievement to make EBNEO happen a 2nd time!

There will be no webcast this time, but you will be able to follow the symposias on Twitter

@pubneo or @EbNeo or the hash-tag #ebneo2013

PS. BTW, the 3rd EBNEO is taking form too. Unless we meet in Istanbul over the next coming days, let's hope that we meet 14-15 September 2015 in.... Philadelphia/USA.

Stefan Johansson

I have a week off clinical duties for research. After the weather forecast yesterday, I brought my laptop and dataset home, as I realized it could be difficult to get to work.

So, now I sit here analysing the effect of maternal BMI on infant health (more to be read in journals near you in 2013...), with a great snow storm outside our house.

It's winter, and a very good one :)!

Almost as good as the exciting odds ratios coming up on my laptop screen!

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Stefan Johansson

@24weekers started to follow our twitter account @99nicu - which draw my attention to "24weekers" - a film project by the journalist/film producer Alan Entwistle who became the father of a baby born at 24 weeks gestation. A film that "affirms the value of life".

The project seeks crowd-sourced funding through Kickstarter (here!).

Moved by the trailer, I really hope that enough people will contribute. This movie would be important document, for the public, for health care professionals, for politicians and not the least for the many-many thousands of those who became parents far too early to the tiny ones, cared for in NICUs around the world.

Click here to read more about what Alan Entwistle and his team want to achieve.

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