What do neurology information seekers really want?

A few months ago, Neurochecklists set out to discover how people go about searching for neurology information. We therefore carried out an online survey of neurology information users. We asked 10 critical questions about the who, what, wherewhy, and how of neurology information quest.

https://pixabay.com/en/questions-who-what-how-why-where-1328465/

 

We asked these question specifically to guide a major Neurochecklists upgrade. This knowledge is, after all, critical for a website which has set out to be the best source of clear, concise, and comprehensive neurology information. But we needed help to know what really matters to people when they go foraging for neurology. What do they really want, and how do they go about satisfying their need?

Search Key. GotCredit on Flickr. https://www.flickr.com/photos/gotcredit/32943606783/

 

The response we got was heart-warming; about 190 people answered our online questions. Below are the questions along with the insights we gained from the answers.

Q&A. opensource.com on Flickr. https://www.flickr.com/photos/opensourceway/5556249000

 

Who searches for neurology information?

More than 50% of our responders were consultant neurologists, and about 15% were medical consultantsNeurology trainees constituted about 7%. The range of users is however quite broad, including nurses, surgeons, medical students, and patients! See the breakdown in the pie chart below:

Insight: There are diverse neurology information seekers!

How often do we forage for neurology information?

Neurology information is in high demand, with >50% of responders seeking information at least once a day, and >80% at least once a week. Below is the breakdown:

Insight: There is a huge craving for neurology information!

Where do we go when we need neurology information?

Online websites are by far the most popular source of quick neurology information, accounting for >50% of responses. This is followed by journals which account for just over 25% of responses. Very few responders access textbooks, handbooks, downloadable apps or online videos. Below is the breakdown:

Insight: Neurology source information is now mainly online

Where are we when we most crave neurology information?

In a question which allowed multiple answers, the clinic was by far the most common setting for looking up neurology information. We however also have a strong urge for neurology on the ward, and at home! Below is the breakdown:

Insight: The need for neurology information has no boundaries

Why do we access neurology information?

The most frequent reasons responders access neurology information were to answer clinical questions and for personal study. Other reasons were to aid discussions with patients, and to look for relevant references.

Insight: the checklist approach is the best solution

What devices do we use to access neurology information?

In another multiple answer question, responders most often use their phones to access online neurology information. Laptops and desktops are also favoured, but tablets much less so.

Insight: neurology information must be device-compatible

What features do we most favour in an online neurology database?

We asked what features responders most desire in an online neurology database, and the front-runners here are accuracy and currency of information, followed by conciseness, adequacy, ease of navigation, and link to references.

 

Insight: Neurochecklists is on the right track

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We wish to extend our thanks to everybody who took part in the survey, including the many who attempted it after the closing date! We have taken all the responses on board, and we have been working night and day to provide an enhanced Neurochecklists. Watch out for our next blog post to find out the changes we will be launching soon. Neurology seekers, watch this space!

By AnsonloboOwn work, CC BY-SA 4.0, Link

What inspiring things are people saying about Neurochecklists?

It is no secret that The Neurology Lounge is affiliated with Neurochecklists. It is difficult to imagine that visitors to this blog would have missed this ‘subtle‘ gif on the front page:

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It is hard to see how they could have bypassed this ‘understated‘ screenshot at the end of each blog post:

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It is even harder to believe that they missed the ‘discrete‘ blog posts on checklists such as:

So what is this blog post about then? It is to announce that, after several months in beta version, Neurochecklists has come of age. During this time, the application went through massive expansion, refining, editing, and fine-tuning. More importantly, many of the hundreds of users sent it helpful feedback, all of which have helped to enhance the app. Most of the comments are indeed gratifying, as reflected in this screenshot which is now on the Neurochecklists landing page:

And here are few more…I just have to share!

“Interesting and convenient for everyday work…and… for continuing education”

“It’s nice and concise. A good quick reference”

“It would be helpful to all internists but more importantly, neurologists and neurology residents”

“It’s very good! It’s really practical”

“A fabulous quick reference material for neurologists and trainees”

“This is a really useful resource

“It’s excellent

“It helps me to learn neurology simpler and fast”

Amazing! Good work!!!”

 “Very good and very useful to neurologists in training and in practice”

“This is excellent…I love the instant access to abstracts especially useful to quote papers”

“It’s a good source of data

“It’s a well designed and laid out site”

Concise and therefore useful

I liked it. It is very useful

“Very good portal for all relevant information”

 

OK, I admit it. I am posting the comments to encourage more people to register. There is a free account, but of course going Premium isn’t that painful either. And why not? Neurochecklists is packed with relevant and up-to-date information, linked to the latest references, and under constant review. It is comprehensive, concise, and handy. And it is now post-beta! And if you missed the 6 clickable opportunities above to go to the app, you may do so below. Go on then, explore it!

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What’s evolving at the cutting-edge of autoimmune neurology?

This is a follow up to my previous blog titled What are the dreadful autoimmune disorders that plague neurology. Autoimmune neurology is a rapidly evolving field; blink and you will miss important developments. So what’s evolving in autoimmune neurology? Below are my top 4.

 

1. Insignificance of isolated VGKC positivity

By The original uploader was Iantresman at English Wikipedia - Transferred from en.wikipedia to Commons., CC BY 2.5, https://commons.wikimedia.org/w/index.php?curid=1821346
By The original uploader was Iantresman at English Wikipedia – Transferred from en.wikipedia to Commons., CC BY 2.5, https://commons.wikimedia.org/w/index.php?curid=1821346

Anti VGKC antibody encephalitis is caused by two different antibodies called LGI1 and Caspr2. The immunology laboratory would however only test for these two if the ‘generic’ VGKC test is positive. Neurologists are understandably left scratching their heads when both tests turn out to be negative. Not any more, going by a report in Neurology titled The relevance of VGKC positivity in the absence of LGI1 and Caspr2 antibodies. The judgment is out: a positive VGCK antibody test is not significant if both LGI1 and Caspr2 are negative. What a relief.

2. IgG4-mediated autoimmune disorders

By Swharden - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=4752456
By SwhardenOwn work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=4752456

This is a fairly new group of autoimmune disorders consisting of at least 13 different types. They are bad news because they cause many neurological disorders and also ravage other organs. I have previously discussed IgG4 peripheral neuropathy in my post titled What’s looming at the frontline of peripheral neuropathy. The other neurological diseases associated with IgG4 include, surprisingly, myasthenia gravis (MG), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), and neuromyotonia. Less familiar IgG4 disorders are encephalopathyhypertrophic pachymeningitis and  sleep disorders with antibody to Iglon5. Trust the researchers to keep the clinicians ever on their toes.

3. GRIN-1 NMDA receptor encephalitis

DNA strand. Mehmet Pinarci on Flikr. https://www.flickr.com/photos/99843102@N05/14002600832
DNA strand. Mehmet Pinarci on Flikr. https://www.flickr.com/photos/99843102@N05/14002600832

Many acquired neurological disorders have a way of dragging genetics into their fold. Such is the case it seems with anti NMDA receptor encephalitis. This is the case with the GRIN-1 gene which codes for an NMDA receptor subunit. Mutations in this gene results in visual impairmentintellectual disability, and eye movement disorders. This is reported in Neurology by Josep Dalmau and colleagues in a paper titled Delineating the GRIN1 phenotypic spectrum. It is appropriate that the authors call this the genetic sibling of NMDA receptor encephalitis.

4. ECT for anti-NMDA receptor encephalitis 

Medcraft B-24 MarkII ECT. Niall Williams on Flikr. https://www.flickr.com/photos/niftyniall/17654690751
Medcraft B-24 MarkII ECT. Niall Williams on Flikr. https://www.flickr.com/photos/niftyniall/17654690751

The typical treatment of autoimmune encephalitis revolves around steroids, intravenous immunoglobulins (IVIg), and plasma exchange. Neurologists, when pushed to the wall, may use heavy duty agents such as Rituximab and Cyclophosphamide. Because anti-NMDA receptor encephalitis may be associated with ovarian teratomas, neurologists may make the difficult trip across the border to consult their gynaecology colleagues. I thought these were all the treatment options for anti NMDA receptor encephalitis until I read this case report, again in Neurology, which reported an excellent response to Electroconvulsive therapy in anti-NMDA receptor encephalitis. A no-brainer then if you see neurologists exchanging pleasantries with psychiatrists: they are the ECT experts. It is just a case report for now, but well-worth thinking about when all else fails.

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You may check out The Anti NMDA Receptor Encephalitis Foundation which is raising awareness of autoimmune encephalitis.

And here is a recent practical and comprehensive review of anti NMDA encephalitis by Eric Lancaster in the Journal of Clinical Neurology

And indulge me to make another shameless pitch here for neurochecklists which, after all, covers   autoimmune neurology comprehensively!

So what is the secret of neurochecklists?

If you have been following this blog closely, you couldn’t have missed my series of blog posts introducing neurochecklists. If you haven’t, then check them out here:

So what is the secret of neurochecklists? As a picture is worth a thousand words, a video clip must be worth a thousand blogs posts. Enough blogging on this subject then; here is a video glimpse at what makes neurochecklists tick-even if I say so myself!

How will neurology checklists unlock excellent practice?

Launching neurochecklists

After 5 years of data gathering and sorting, neurochecklists launches today. This is a web-based application which covers the spectrum of neurological practice. I was prompted by Atul Gawande‘s call to physicians to develop checklist-driven medicine, as I discussed in my previous blog post, What is the value of checklists in medical practice? Conceived in libraries and coffee shops, lay-bys and terminals, neurochecklists is the culmination of a vision to commit the whole of neurology to checklists.

 

Neurochecklists image

 

What exactly is neurochecklists?

Neurochecklists is a comprehensive and easy-to-search database consisting of thousands of checklists. It is conceived as a mobile resource to aid all cadres of medical professionals. It has 18 categories, each consisting of chapters divided into topics. All checklists are brief and divided into sub-checklists as required. Users may explore topics either through the search boxes available on all webpages, or via the Index. Each checklist is fully referenced, and all articles are hyperlinked to their PubMed abstracts, and books to their Amazon.com page.

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How can neurochecklists help neurological practice?

1. By quickly checking up a topic in the clinic or on a ward round

And you haven't been to your doctor because? Alex Proimos on Flikr. https://www.flickr.com/photos/proimos/6870109454
And you haven’t been to your doctor because? Alex Proimos on Flikr. https://www.flickr.com/photos/proimos/6870109454

2. By helping the preparation of presentations or teachings

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3. By making reading for examinations and researching a topic easier

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4. By complementing the search for relevant and up-to-date references

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5. Facilitating neurology discussions with patients 

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What exactly does neurochecklists contain?

Neurochecklists is extensive, covering all the core neurological subspecialties:

  • Disorders of Cranial Nerves
  • Disorders of Cognition
  • Disorders of Consciousness
  • Neurological Infections and Toxicity
  • Epilepsy
  • Parkinsonism
  • Non-Parkinsonian Movement Disorders
  • Headache Disorders
  • Neuroinflammatory Disorders
  • Anterior Horn Cell Disorders
  • Peripheral Nerve and Radicular Disorders
  • Neuromuscular Junction and Muscle Diseases
  • Stroke
  • Nervous System Tumours
  • Spinal Cord Disorders
  • Autoimmune and Metabolic Disorders
Binaural-beat-digital-drug. Digitalbob8 on Flikr. https://www.flickr.com/photos/44568283@N02/4098316274
Binaural-beat-digital-drug. Digitalbob8 on Flikr. https://www.flickr.com/photos/44568283@N02/4098316274

Neurochecklists also addresses the range of allied neurological specialities such as:

  • Neurophysiology
  • Neurosurgery
  • Neuroradiology
  • Neuropsychiatry
  • Neuroophthalmology
  • Neurootology
  • Pain Disorders
  • General medicine
  • Surgery
  • Pregnancy

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These diseases are all reviewed from diverse perspectives:

  • Epidemiology
  • Genetics
  • Pathology
  • Clinical Features
  • Investigations 
  • Treatment
Human brain illustrated with millions of small nerves. Ars Electronica on Flikr. https://www.flickr.com/photos/arselectronica/13994747444
Human brain illustrated with millions of small nerves. Ars Electronica on Flikr. https://www.flickr.com/photos/arselectronica/13994747444

 

How reliable are neurochecklists?

In developing neurochecklistsI took into consideration the challenges of such a project as discussed in my previous blog, What are the obstacles to creating reliable neurology checklists? Neurochecklists has also gone through a beta-testing stage, and the feedback has influenced the final version. This is however the beginning of the journey to maintain and improve the database. This on-going challenge will require feedback from users which will be invaluable in advancing the app to higher levels.

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What will it cost to access neurochecklists?

Neurochecklists comes with two levels of access. There is a free version which entitles users to 15 free searches a month. There is therefore no excuse not to have a neurochecklists account! To get the maximum benefit of neurochecklists, a premium account is required, and this comes at the equivalent cost of a coffee and cake a month, and even less with an annual subscription.

 

Cake and coffee. Jeremey keith on Flikr. https://www.flickr.com/photos/adactio/4925134798
Cake and coffee. Jeremey keith on Flikr. https://www.flickr.com/photos/adactio/4925134798

 

The reason for paid subscriptions is to help offset the heavy financial cost of app development and future improvement and enhancement plans. One such plan is to develop android and ios platforms. I am however open to suggestions to make this a completely free resource.

 

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Who helped to develop neurochecklists?

Neurochecklists is the result of a collaborative effort in many ways. My wife Zainab has been invaluable in encouraging and supporting me throughout the journey. To Jafaru Dori for invaluable guidance, support and connections. To the bright young men at Studio 14, Stephen, Tobi and Timi for their great imagination and passion for the project. My gratitude to my work colleagues and the hundreds of social media friends who share so much knowledge, much of which has found its way into neurochecklists. And finally my apologies to Aminah, Safiyyah, Ja’far, and Maryam for not having their dad’s full attention for so long. Hopefully it’s been worth the while.

Feedback checklist. AJ Cann on Flikr. https://www.flickr.com/photos/ajc1/9568156463
Feedback checklist. AJ Cann on Flikr. https://www.flickr.com/photos/ajc1/9568156463

How to get to neurochecklists?

If you have so far resisted the dozen opportunities to click on neurochecklists, go on now and click on the image or text below to check it out! Don’t forget to leave your feedback.

Neurochecklists image

  neurochecklists

 

What are the obstacles to creating reliable neurology checklists?

This is a follow up to my previous blog post on the value of checklists in medical practice. That post explored how checklists improve clinical practice and promote patient safety. It also cited Atul Gawande‘s call to Medicine to “seize the opportunity” and produce checklists for all aspects of clinical practice.

Neurology. MV Maverick. https://www.flickr.com/photos/themvmaverick/11396461045
Neurology. MV Maverick. https://www.flickr.com/photos/themvmaverick/11396461045

 

Picking up this gauntlet for neurology comes with peculiar challenges. Here are the 7 hurdles to overcome.

1. The challenge of a diverse specialty

Legume diversity. Global Crop Diversity Trust on Flikr. https://www.flickr.com/photos/croptrust/3594324633
Legume diversity. Global Crop Diversity Trust on Flikr. https://www.flickr.com/photos/croptrust/3594324633

Neurology consists of an astonishing diversity of sub-specialities. Any neurology checklist must exhaustively cover the major neurological categories such as stroke, epilepsy, movement disorders, headache, dementia, neuromuscular diseases, sleep disorders, neuro-inflammation, nervous system tumours, and neurological infections. These topics must be thoroughly covered with emphasis on their clinical features, investigations, and treatments. A useful database must also include rare neurological diseases, of which neurology has quite a few. This is reflected in my previous blog on the most perplexing diseases that excite neurologists.

2. The challenge of multiple associated specialties

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Neurological disorders cut across many diverse allied neurological specialties. Any dependable checklist database must cover these specialised fields which include neurosurgery, neuroradiology, neuroophthalmology, neuropsychiatry, neuropaediatrics, and pain management. It must also include important diseases which straddle neurology and general medicine. These include a long list of cardiovascular, nutritional, endocrine and gastrointestinal disorders. Furthermore, neurologists often have to deal with surgical complications especially in orthopaedics and following transplant surgery. Neurologists are also frequently called upon to attend to neurological problems that are unique to pregnancy. Any practical checklist application must therefore thoroughly address these areas.

Brain Cells Created From Skin Cells in Landmark Study. Day Donaldson on Flikr. https://www.flickr.com/photos/thespeakernews/15656329862
Brain Cells Created From Skin Cells in Landmark Study. Day Donaldson on Flikr. https://www.flickr.com/photos/thespeakernews/15656329862

3. The challenge of reliable content

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It goes without saying that the most important feature of any database is reliable content which alone will engender trust and confidence. A reliable checklist must obtain its material from dependable sources. Neurology is replete with reliable textbooks and reference websites, . Neurology is also bursting at the seams with journals such as Neurology, Brain, the JNNP, and Journal of Neurology, each churning out a bewildering array of neurology guidelines, review articles, ground-breaking studies, and fascinating case reports. The challenge is to keep a regular handle on these sources, sifting through for practical and established material. As important for the user is that any checklist must be fully referenced and hyperlinked to the source material.

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4. The challenge of practical functionality

Any practical checklist database must be available on the move, easily accessible and searchable. In other words, it must be in the form of a mobile application. The app must have a reliable search functionality. More importantly for users is the requirement that the application must serves as a prompt to remember important points across the breadth of neurological practice: history taking, investigations, differential diagnosis, and treatment. For the administrator, the technology must make it easy to update and edit content, keeping the content consistently up-to-date.

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5. The challenge of varied target groups

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In developing any form of medical resource, it is a challenge to define the target audience. The primary aim of a neurology checklist application is to ease the challenges medical professionals face in accessing relevant and practical information about neurology in a timely way. This may be on a busy ward round or clinic, but also when researching a topic or preparing a presentation. The core users of a neurology application will therefore clearly be neurologists and neurology trainees.

By SpinningSpark real life identity: SHA-1 commitment ba62ca25da3fee2f8f36c101994f571c151abee7 - Created with Superliminal's Magic Cube 4D, CC BY-SA 3.0, https://en.wikipedia.org/w/index.php?curid=17492843
By SpinningSpark real life identity: SHA-1 commitment ba62ca25da3fee2f8f36c101994f571c151abee7 – Created with Superliminal’s Magic Cube 4D, CC BY-SA 3.0, https://en.wikipedia.org/w/index.php?curid=17492843

In many places however other cadres of medicine cater for people with neurological diseases. Psychiatrists, neurosurgeons, paediatriciansgeneral physicians, obstetricians, ophthalmologists, specialist and general nurses, would likely access the database. Other health care professionals may also find areas of interest such as speech therapists, physiotherapists and occupational therapistsMedical students and researchers also require vast amounts of neurological information, often within restricted time frames.

A Tangle of Different Colours 001. Christina Quinn on Flikr. https://www.flickr.com/photos/chrisser/7909899736
A Tangle of Different Colours 001. Christina Quinn on Flikr. https://www.flickr.com/photos/chrisser/7909899736

6. The challenge of public access

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Specialised medical application are never aimed at non-medically trained people. The reality however is that the general public are closely involved in their care today, seeking reliable information to address their medical concerns. It is inevitable that patients and their families will access the checklist database. For this reason the language must be simple and clear, avoiding any sort of ambiguity.

7. The challenge of resources and pricing

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A checklist application, to be most beneficial, should ideally be free to use. A Wikipedia model would be a model to adapt. But creating a checklist database, with all the features mentioned above, would surely stretch resources in terms of time and funding. There will also be great demands on resources to maintain and enhance it. A balance must be struck between beneficence and realism. Such a balance should have, as with most applications, a free version with sufficient access of some sort, and a premium version with unlimited access. The developer must also be aware that potential users have limited resources to spread round their conflicting demands. Any premium account should be affordable, perhaps not more than the equivalent cost of a cup of coffee and a cake a month.

Muffin and coffee. Phil Gyford on Flikr. https://www.flickr.com/photos/philgyford/6534958441
Muffin and coffee. Phil Gyford on Flikr. https://www.flickr.com/photos/philgyford/6534958441 

 

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Is there any neurology checklist application that has taken the above challenges into consideration? This will be revealed in my next blog post, How simple checklists unlock excellent neurological practice?

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What is the value of checklists in medical practice?

Checklists

We all know how important checklists are in our day-to-day lives. We cannot survive the day without a to-do list reminding us of the tasks that make our lives go round. It is clearly not an exaggeration to say we live by the checklist.

Feedback checklist. AJ Cann on Flikr. https://www.flickr.com/photos/ajc1/9568156463
Feedback checklist. AJ Cann on Flikr. https://www.flickr.com/photos/ajc1/9568156463

Airline safety

But checklists perform far more important roles than reminding us to buy the milk, or to pick junior after football practice. Checklists are central to the maintenance of safe practice in many industries. Checklists are best celebrated in aviation where they are indispensable to airline safety.

By Janke - Janke, CC BY 3.0, https://en.wikipedia.org/w/index.php?curid=27079600
By JankeJanke, CC BY 3.0, https://en.wikipedia.org/w/index.php?curid=27079600

The Checklist Manifesto

Despite their recognised value, checklists are not applied widely enough in medicine. One person who has passionately addressed this shortcoming is Atul Gawande in his highly acclaimed book, The Checklist Manifesto. In this book, the author explored the positive impact of checklists based on his own research into surgical safety. His view of checklists is quite instructive, for example when he says:

  • Checklists translate knowledge into a simple, usable, and systematic form
  • Checklists are quick and simple tools aimed to buttress the skills of expert professionals.
  • Good checklists could become as important for doctors and nurses as good stethoscopes
By Courtesy of the John D. and Catherine T. MacArthur Foundation, CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=35497665
By Courtesy of the John D. and Catherine T. MacArthur Foundation, CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=35497665

 

The WHO surgical safety checklist

Gawande’s major contribution to patient safety is the development of the acclaimed WHO Surgical Safety Checklist. This simple tool is now a key component of surgical operating procedures globally.

WHO Surgical Safety Checklist. John Sloan on Flikr. https://www.flickr.com/photos/johnlsloan/8485508277
WHO Surgical Safety Checklist. John Sloan on Flikr. https://www.flickr.com/photos/johnlsloan/8485508277

 

Gawande’s own experience of using the checklist shows how important this tool is. He says:

  • I have yet to get through a week in surgery without the checklist’s leading us to catch something we would have missed
  • With the checklist in place, we have caught unrecognized drug allergies, equipment problems, confusion about medications, mistakes on labels for biopsy specimens
  • We have made better plans and been better prepared for patients

Beyond the operating room

Atul Gawande made the important observation that checklists have potential applications “beyond the operating room“. He said “…there are hundreds, perhaps thousands, of things doctors do that are as dangerous and prone to error as surgery“. He gave several examples of these such as the evaluation of headache, chest pain, lung nodules and breast lumps. He also pointed to the treatment of heart attacks, strokes, drug overdoses, pneumonias, kidney failures, seizures, and headache.

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Addressing Gawande’s challenge

Gawande appreciates that all medical activities involve risk, uncertainty, and complexity. His simple recommendation is to commit them all to checklists. He urges the medical fraternity to seize the opportunity and do this. Apart from Anaesthesia which is probably ahead of the curve, there are only few medical checklists such as:

By http://wellcomeimages.org/indexplus/obf_images/7e/71/50f93b8f2f172d5b4544ddbe42b6.jpgGallery: http://wellcomeimages.org/indexplus/image/L0040163.html, CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=36095194
By http://wellcomeimages.org/indexplus/obf_images/7e/71/50f93b8f2f172d5b4544ddbe42b6.jpgGallery: http://wellcomeimages.org/indexplus/image/L0040163.html, CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=36095194

 

Neurology checklists

Gawande’s vision of a checklist-led approach to medicine, encompassing the spectrum of clinical practice, is indeed challenging. As a neurologist who is keen on patient safety, I was intrigued by this perspective, and I wondered if it was possible to commit the whole of neurology to checklists. In taking up the challenge, I imagined a neurology checklist application that is practical, comprehensive, easy to search, evidence-based, and up-to-date. After five years of collecting and distilling articles, reviews and guidelines, and after months of engagement with software developers, the dream is becoming reality. In my next blog post I will describe the outcome of the journey and discuss how simple checklists may unlock excellent neurological practice.

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