#goldacre review

[mostlysignssomeportents]

Palantir’s NHS-stealing Big Lie

I'm on tour with my new, nationally bestselling novel The Bezzle! Catch me in TUCSON (Mar 9-10), then SAN FRANCISCO (Mar 13), Anaheim, and more!

Capitalism's Big Lie in four words: "There is no alternative." Looters use this lie for cover, insisting that they're hard-nosed grownups living in the reality of human nature, incentives, and facts (which don't care about your feelings).

The point of "there is no alternative" is to extinguish the innovative imagination. "There is no alternative" is really "stop trying to think of alternatives, dammit." But there are always alternatives, and the only reason to demand that they be excluded from consideration is that these alternatives are manifestly superior to the looter's supposed inevitability.

Right now, there's an attempt underway to loot the NHS, the UK's single most beloved institution. The NHS has been under sustained assault for decades – budget cuts, overt and stealth privatisation, etc. But one of its crown jewels has been stubbournly resistant to being auctioned off: patient data. Not that HMG hasn't repeatedly tried to flog patient data – it's just that the public won't stand for it:

https://www.theguardian.com/society/2023/nov/21/nhs-data-platform-may-be-undermined-by-lack-of-public-trust-warn-campaigners

Patients – quite reasonably – do not trust the private sector to handle their sensitive medical records.

Now, this presents a real conundrum, because NHS patient data, taken as a whole, holds untold medical insights. The UK is a large and diverse country and those records in aggregate can help researchers understand the efficacy of various medicines and other interventions. Leaving that data inert and unanalysed will cost lives: in the UK, and all over the world.

For years, the stock answer to "how do we do science on NHS records without violating patient privacy?" has been "just anonymise the data." The claim is that if you replace patient names with random numbers, you can release the data to research partners without compromising patient privacy, because no one will be able to turn those numbers back into names.

It would be great if this were true, but it isn't. In theory and in practice, it is surprisingly easy to "re-identify" individuals in anonymous data-sets. To take an obvious example: we know which two dates former PM Tony Blair was given a specific treatment for a cardiac emergency, because this happened while he was in office. We also know Blair's date of birth. Check any trove of NHS data that records a person who matches those three facts and you've found Tony Blair – and all the private data contained alongside those public facts is now in the public domain, forever.

Not everyone has Tony Blair's reidentification hooks, but everyone has data in some kind of database, and those databases are continually being breached, leaked or intentionally released. A breach from a taxi service like Addison-Lee or Uber, or from Transport for London, will reveal the journeys that immediately preceded each prescription at each clinic or hospital in an "anonymous" NHS dataset, which can then be cross-referenced to databases of home addresses and workplaces. In an eyeblink, millions of Britons' records of receiving treatment for STIs or cancer can be connected with named individuals – again, forever.

Re-identification attacks are now considered inevitable; security researchers have made a sport out of seeing how little additional information they need to re-identify individuals in anonymised data-sets. A surprising number of people in any large data-set can be re-identified based on a single characteristic in the data-set.

Given all this, anonymous NHS data releases should have been ruled out years ago. Instead, NHS records are to be handed over to the US military surveillance company Palantir, a notorious human-rights abuser and supplier to the world's most disgusting authoritarian regimes. Palantir – founded by the far-right Trump bagman Peter Thiel – takes its name from the evil wizard Sauron's all-seeing orb in Lord of the Rings ("Sauron, are we the baddies?"):

https://pluralistic.net/2022/10/01/the-palantir-will-see-you-now/#public-private-partnership

The argument for turning over Britons' most sensitive personal data to an offshore war-crimes company is "there is no alternative." The UK needs the medical insights in those NHS records, and this is the only way to get at them.

As with every instance of "there is no alternative," this turns out to be a lie. What's more, the alternative is vastly superior to this chumocratic sell-out, was Made in Britain, and is the envy of medical researchers the world 'round. That alternative is "trusted research environments." In a new article for the Good Law Project, I describe these nigh-miraculous tools for privacy-preserving, best-of-breed medical research:

https://goodlawproject.org/cory-doctorow-health-data-it-isnt-just-palantir-or-bust/

At the outset of the covid pandemic Oxford's Ben Goldacre and his colleagues set out to perform realtime analysis of the data flooding into NHS trusts up and down the country, in order to learn more about this new disease. To do so, they created Opensafely, an open-source database that was tied into each NHS trust's own patient record systems:

https://timharford.com/2022/07/how-to-save-more-lives-and-avoid-a-privacy-apocalypse/

Opensafely has its own database query language, built on SQL, but tailored to medical research. Researchers write programs in this language to extract aggregate data from each NHS trust's servers, posing medical questions of the data without ever directly touching it. These programs are published in advance on a git server, and are preflighted on synthetic NHS data on a test server. Once the program is approved, it is sent to the main Opensafely server, which then farms out parts of the query to each NHS trust, packages up the results, and publishes them to a public repository.

This is better than "the best of both worlds." This public scientific process, with peer review and disclosure built in, allows for frequent, complex analysis of NHS data without giving a single third party access to a a single patient record, ever. Opensafely was wildly successful: in just months, Opensafely collaborators published sixty blockbuster papers in Nature – science that shaped the world's response to the pandemic.

Opensafely was so successful that the Secretary of State for Health and Social Care commissioned a review of the programme with an eye to expanding it to serve as the nation's default way of conducting research on medical data:

https://www.gov.uk/government/publications/better-broader-safer-using-health-data-for-research-and-analysis/better-broader-safer-using-health-data-for-research-and-analysis

This approach is cheaper, safer, and more effective than handing hundreds of millions of pounds to Palantir and hoping they will manage the impossible: anonymising data well enough that it is never re-identified. Trusted Research Environments have been endorsed by national associations of doctors and researchers as the superior alternative to giving the NHS's data to Peter Thiel or any other sharp operator seeking a public contract.

As a lifelong privacy campaigner, I find this approach nothing short of inspiring. I would love for there to be a way for publishers and researchers to glean privacy-preserving insights from public library checkouts (such a system would prove an important counter to Amazon's proprietary god's-eye view of reading habits); or BBC podcasts or streaming video viewership.

You see, there is an alternative. We don't have to choose between science and privacy, or the public interest and private gain. There's always an alternative – if there wasn't, the other side wouldn't have to continuously repeat the lie that no alternative is possible.

Name your price for 18 of my DRM-free ebooks and support the Electronic Frontier Foundation with the Humble Cory Doctorow Bundle.

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/03/08/the-fire-of-orodruin/#are-we-the-baddies

Image: Gage Skidmore (modified) https://commons.m.wikimedia.org/wiki/File:Peter_Thiel_(51876933345).jpg

CC BY-SA 2.0 https://creativecommons.org/licenses/by-sa/2.0/deed.en

#pluralistic #peter thiel #trusted research environment #opensafely #medical data #floss #privacy #reidentification #anonymization #anonymisation #nhs #ukpoli #uk #ben goldacre #goldacre report #science #evidence-based medicine #goldacre review #interoperability #transparency

[aninsecurewriter]

100 must-read books!

This is a list of books considered "must-reads" from various lists and online posters. I'll be reviewing them as I go but mainly keeping track of what I have and haven't read here.

American Gods by Neil Gaiman

Lord of the Flies by William Golding

Fahrenheit 451 by Ray Bradbury

Sophie's World by Jostein Gaarder

Wide Sargasso Sea by Jean Rhys

The Great Gatsby by F. Scott Fitzgerald

To Kill a Mockingbird by Harper Lee

Matilda by Roald Dahl

The Secret History by Donna Tart

Do Androids Dream of Electric Sheep by Philip K. Dick

The Godfather by Mario Puzo

Murder on the Orient Express by Agatha Christie

The Man Who Mistook His Wife for a Hat by Oliver Sacks

Noughts and Crosses by Malorie Blackman

In Cold Blood by Truman Capote

Frankenstein by Mary Shelly

Alice's Adventures in Wonderland by Lewis Carroll

Heart of Darkness by Joseph Conrad

Wuthering Heights by Emily Bronte

Nineteen Eighty-Four by George Orwell

The Grapes of Wrath by John Steinbeck

Norwegian Wood bt Haruki Murakami

One Flew Over the Cuckoo's Nest by Ken Kesey

The Man in the Iron Mask by Alexandre Dumas

The Color Purple by Alice Walker

The Girl with the Dragon Tattoo by Stieg Larsson

Lolita Vladimir Nabokov

Great Expectations by Charles Dickens

The Harry Potter Series by J.K Rowling

His Dark Materials trilogy by Philip Pullman

The Old Man and the Sea by Ernest Hemingway

The Picture of Dorian Gray by Oscar Wilde

The Road by Cormac McCarthy

Ulysses by James Joyce

Bad Science by Ben Goldacre

I Capture the Castle by Dodie Smith

Fear and Loathing in Las Vegas by Hunter S. Thompson

Les Miserables by Victor Hugo

The Catcher in the Rye by J.D Salinger

The Wind in the Willows by Kenneth Grahame

Wild Swans by Jung Chang

The Hitchhikers Guide to the Galaxy by Douglas Adams

Tinker, Tailor, Soldier, Spy by John le Carre

Crime and Punishment by Fyodor Dostoevsky

The Poisonwood Bible by Barbara Kingsolver

Adventures of Huckleberry Finn by Mark Twain

Gulliver's Travels by Johnathan Swift

The War of the Worlds by H.G Wells

Anna Karenina by Leo Tolstoy

Freakonomics by Steven D. Levitt

Persuasion by Jane Austen

The Help by Kathryn Stockett

Beloved by Toni Morrison

A Clockwork Orange by Anthony Burgess

American Psycho by Bret Easton Ellis

Notes from a Small Island by Bill Bryson

Macbeth by Shakespeare

The Lord of the Rings (trilogy) by J.R.R Tolkien

The Outsiders by S.E Hinton

Mrs. Dalloway by Virginia Woolf

The Handmaid's Tale by Margaret Atwood

A Wild Sheep Chase by Haruki Murakami

Schindler's Ark by Thomas Keneally

London Fields by Martin Amis

Sherlock Holmes and the The Hound of the Baskerville's by Arthur Conan Doyle

My Man Jeeves by P.G Wodehouse

The English Patient by Michael Ondaatje

The Mill on the Floss by George Eliot

The Count of Monte Cristo by Alexander Dumas

Little Women by Louisa May Alcott

Gladys Aylward the Little Woman by Gladys Aylward

Mindnight's Children by Salman Rushdie

Tess of the D'Ubervilles by Thomas Hardy

The Boy in the Stripped Pajamas by John Boyne

Hamlet by William Shakespeare

Goodnight Mister Tom by Michelle Magorian

Dissolution by C.J Sansom

The Time Machine by H.G Wells

Winnie the Pooh (complete collection) by A.A Milne

Animal Farm by George Orwell

The Diary of a Young Girl by Anne Frank

The Castle by Franz Kafka

Dracula by Bram Stoker

All Quiet on the Western Front by Eric Maria Remarque

Bridget Jones's Diary by Helen Fielding

The Kite Runner by Khaled Hosseini

Pride and Prejudice by Jane Austen

To The Lighthouse by Virginia Woolf

Memoirs of a Geisha by Arthur Golden

Misery by Stephen King

The Chronicles of Narnia by C.S Lewis

The Shining by Stephen King

The Odyssey by Homer

War and Peace by Leo Tolstoy

The Secret Garden by Frances Hodgson

Tell No One by Harlan Coben

Moby Dick by Herman Melville

A Tale of Two Cities by Charles Dickens

Middlemarch by George Eliot

Jane Eyre by Charlotte Bronte

#books #reading #literature #100 -must reads #challenge

[luxe-pauvre]

Hey Holly, I'm starting my Master's thesis and was wondering how you go about your literature research and especially organizing sources/knowledge? Any special tips would be appreciated! :) All the best!

I don’t think I have any ‘special tips’ outside of what you’ve probably already read online/in library guides. Students and academics have been gathering and organising literature since time immemorial, so there’s no need to reinvent the wheel.

My literature research for my MSc and now for the first chapter of my PhD was/is a systematic review, so I follow/ed the process outlined in the Cochrane guidelines.

For general literature research for assignments and learning, I still use the databases I have access to through the university (mainly Ovid as it houses both Medline and Embase), and I would recommend mastering keyword searches, mapping to headings, MeSH terms, explode/focus functions, etc. early on. There are plenty of library guides for this online from various universities.

In terms of organising sources, I used Zotero during my BSc, EndNote during my MSc, and I’m using SciWheel during my PhD. I love SciWheel, especially as it finds papers that may be relevant to you based on papers you’ve added to your library without you having to do anything. EndNote and I have a complicated relationship, but when you have 5000 papers to screen for a systematic review, it remains the best option. Zotero is by far the best free option: Ben Goldacre wrote Bad Science and Bad Pharma using Zotero, and if it’s good enough for him, it’s good enough for me.

I would recommend picking a reference manager early on and sticking to it. Having to switch half way through because you hate the one you have is possible, but it’s laborious and time consuming.

In terms of organising paper notes, everyone is different. I would highly recommend reading How To Take Smart Notes by Sönke Ahrens if you plan on continuing in academia past your Master’s, though I wouldn’t worry about it now as you’ve already got started on your thesis.

#academia

[cakesandfail]

Got rejected straight away for the jobs I applied for the other day, because my transferrable skills of data analysis, literature review, and science communication are apparently not transferrable at all

except that they are actually, and there’s a job going in Ben Goldacre’s team to wrangle covid data and write papers on it, so I’m going to apply for that and see how I get on

that one also happens to be a much shorter commute, has the possibility of a part-time role and/or flexible hours, and they’re prioritising applicants who aren’t the usual ‘straight white men who think they’re hot shit’ candidates. I reckon I might have a chance at this one.

Admittedly I can’t code for shit, but tbf the job ad did say that a) that would be okay if you think you can learn it quickly and b) they might have some slightly lower-paid roles that don’t involve every single aspect of the main one- and those are still within an acceptable salary range for me so I’d be fine with one of those instead

PLEASE LET ME GET A NEW JOB OH MY GOD

#goth2boss: clinical edition #listen: if i can churn out a report for the govt on ventilator pressures in like 2 days #then i can definitely learn to code #i can do a n y t h i n g #(as long as it doesn't require me to go anywhere or make any physical effort) #(i have chronic pain i can't do that)

[my-name-is-dahlia]

Vocabulary (pt.dcclxxvii)

Words taken from Bad Science by Ben Goldacre:

nought (n.) British. the digit 0; a cipher.

preventative/preventive medicine (n.) medical practices that are designed to avert and avoid disease. For example, screening for hypertension and treating it before it causes disease is good preventive medicine. Preventive medicine takes a proactive approach to patient care. [x]

alternative therapy/medicine (n.) a medical treatment that is used instead of traditional (mainstream) therapies. Some people also refer to it as “integrative” or “complementary” medicine. Examples include acupuncture, chiropractic medicine, and energy therapies. [x]

social inequality (n.) relational processes in society that have the effect of limiting or harming a group's social status, social class, and social circle. [x]

oestrogenic/estrogenic (adj.) of, relating to, or caused by estrogen.

omega-3 fatty acid (n.) a long-chain polyunsaturated fatty acid found especially in fish oil, believed to help reduce blood cholesterol levels.

Broca’s area (n.) part of the premotor cortex in the inferior frontal convolution of the brain, concerned with the movements required for speech.

medicalization (n.) the process by which human conditions and problems come to be defined and treated as medical conditions, and thus become the subject of medical study, diagnosis, prevention, or treatment.

fraud (n.) the action or an instance of deceiving someone in order to make money or obtain an advantage illegally.

Cochrane a global independent network of researchers, professionals, patients, carers and people interested in health. Their mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence. [x]

#av #avdictionary #english vocabulary #bad science #ben goldacre

[birdkoskincare]

Hi :) are there any science books/textbooks or other resources you’d recommend for, say, a college student? One of my goals this year is that I wanna learn about science more deeply (biology, chemistry, physics etc) but I’m not sure where to start! Thank you in advance 💕

i wish i had a better answer but i only recently started getting into nonfiction myself, and since i’m a science student i tend to gravitate towards non-science books in my free time a lot more… the best i can do is share with you my to-read wishlist of stuff with good reviews that caught my eye! i included some psych books because i think a meta approach to science, its inner workings and how it can fail is absolutely essential.

the gene: an intimate history, siddhartha mukherjee (genetics, i have this book and it’s on my reading queue rn)

the emperor of all maladies, siddhartha mukherjee (cancer)

pandora’s lab: seven stories of science gone wrong, paul offit (ethics, scientific failure)

hit makers: the science of popularity in an age of distraction, derek thompson (psychology, statistics and sociology i think?)

behave: the biology of humans at our best and worst, robert sapolsky (neurobiology)

irrationality, stuart sutherland (psychology, sociology)

a brief history of time, stephen hawking (physics, astronomy)

the lucifer effect: understanding how good people turn to evil, philip zimbardo (psychology, sociology)

bad science, ben goldacre (scientific method and biases in science; ok i’ve actually read this one, he also wrote bad pharma)

the theory of everything, stephen hawking (physics, i read this one too)

astrophysics for people in a hurry, neil degrasse tyson (astrophysics)

(please note that unless stated i haven’t actually read any of those lol i’ve only heard enough good reviews to land them a spot on my wishlist)

#answered

[magicalrocketships]

It’s time for my 2017 Review of Books, huzzah. Actually, it’s more of a list with a few scant comments, but that’s how it is. 

First up, the list:

Human Croquet by Kate Atkinson

The Sense and Sensibility Screenplay and Diaries by Emma Thompson

Star Wars: Before the Awakening by Greg Rucka

The Summer Queen by Elizabeth Chadwick

Carol by Patricia Highsmith

Harry Potter and the Chamber of Secrets by J.K. Rowling, illustrated by Jim Kay

Monstrous Regiment by Terry Pratchett

Ethan of Athos by Lois McMaster Bujold

Labyrinth by Lois McMaster Bujold

Brothers in Arms by Lois McMaster Bujold

Mirror Dance by Lois McMaster Bujold

Because of Miss Bridgerton by Julia Quinn

Komarr by Lois McMaster Bujold

A Civil Campaign by Lois McMaster Bujold

Diplomatic Immunity by Lois McMaster Bujold

Captain Vorpatril’s Alliance by Lois McMaster Bujold

Cetaganda by Lois McMaster Bujold

The Soldier’s Scoundrel by Cat Sebastian

A Gentleman Never Tells by Eloisa James

The Love Song by Kay Simone

Murder on the Orient Express by Agatha Christie

A Family for Christmas by Jay Northcote

Falling by Sierra Riley

With This Kiss (Part One, Colin’s Story) by Eloisa James

Great Expectations by Charles Dickens

Green But For A Season: A Captive Prince Short Story by C.S. Pacat

Faith and Fidelity by Tere Michaels

The Enchanted Castle by Edith Nesbit

Jenna and Jonah’s Fauxmance by Emily Franklin and Brendon Halpin

Nor Iron Bars A Cage by Kaje Harper

The Lawrence Browne Affair by Cat Sebastian

A Fashionable Indulgence: A Society of Gentlemen Book 1 by K.J. Charles

A Seditious Affair: A Society of Gentlemen Book 2 by K.J. Charles

The CEO and the Cowboy by Starla Kay :(

Him by Sabrina Bowen and Elle Kennedy

Last Will and Testament by Dahlia Adler

Jackdaw by K.J. Charles

Truth and Consequences by Linda Winfree

The Warrior’s Apprentice by Lois McMaster Bujold

The Mountains of Mourning by Lois McMaster Bujold

The Convenient Marriage by Georgette Heyer

The Vor Game by Lois McMaster Bujold

Death on the Nile by Agatha Christie

Mending Him by Summer Devon and Bonnie Dee

Lady of Devices by Shelly Adina

My True Love Gave To Me by Ava March

Brook Street: Thief by Ava March

Brook Street: Rogues by Ava March

The Gravity Between Us by Kristen Zimmer :(

Pushing the Limits by Katie McGarry

Carry On by Rainbow Rowell

Where You Are by J.H. Trumble

When Tony Met Adam by Suzanne Brockmann

Imaginary Beings by Dorian Stray

Bombshell: Hollywood A List by C.D. Reiss

The Language of Hoof Beats by Catherine Ryan Hyde

Jeeves and the Yuletide Spirit by P.G. Wodehouse

The Humans by Matt Haig

Geek Girl: Head Over Heels by Holly Smale

Death Comes To Pemberley by P.D. James

Everlasting by Kathleen E. Woodiwiss :(

The Maid of Milan by Beverley Eikli

Treasure Island by Robert Louis Stevenson

How To Repair A Mechanical Heart by J.C. Lillis

Know Not Why by Hannah Johnson 

Save The Date by Annabeth Albert and Wendy Quails

Countless by Karen Gregory

Noah Can’t Even by Simon James Green

Toil and Trouble: A Know Not Why Halloween by Hannah Johnson

Captive Prince by C.S. Pacat

Prince’s Gambit by C.S. Pacat

Jingo by Terry Pratchett

Monstrous Regiment by Terry Pratchett

Wishful Drinking by Carrie Fisher

Longbourn by Jo Baker :(

Texts From Jane Eyre and Other Conversations With Your Favourite Literary Characters by Mallory Ortberg

Cryoburn by Lois McMaster Bujold

Bad Science by Ben Goldacre (NF)

The Duke in Denial by Alexandra Ainsworth

The Gentleman’s Guide to Vice and Virtue by Mackenzi lee

The Fifth Elephant by Terry Pratchett

Lord Lynster Discovers by Adella J. Harris

Lone Star by Josh Lanyon

Gentleman Jole and the Red Queen by Lois McMaster Bujold

Rivers of London by Ben Aaronovitch

The Charioteer by Mary Renault

Moon Over Soho by Ben Aaronovitch

Whispers Underground by Ben Aaronovitch

Broken Homes by Ben Aaronovitch

Foxglove Summer by Ben Aaronovitch

The Farseer Trilogy Book 1: The Assassin’s Apprentice by Robin Hobb

Someone To Love by Mary Balogh

Someone To Hold by Mary Balogh

The Mirror Crack’d From Side To Side by Agatha Christie

A Caribbean Mystery by Agatha Christie

A Boy Worth Knowing by Jennifer Cosgrove

Knit One Girl Two by Shira Glassman

Red at Night by Katie McGarry

Freefall: A Troubleshooters Short Story by Suzanne Brockmann

Here Comes Trouble by A.E. Via :(

Openly Straight by Bill Konigsberg

The Raven Boys by Maggie Stiefvater

Aria by Shira Anthony

Honestly Ben by Bill Konigsberg

Murder at the Vicarage by Agatha Christie

The ones with :( are definite anti-recs. Did not enjoy, would not read again. 

What I have learnt this year: I’m out of step with what a lot of people around me like and love, which is fine, but nevertheless remains true. There are a LOT of ridiculous romance novels on there, mostly because I’m still slowly moving through the books I’ve been stacking up on my kindle for years.  It turns out that a good percentage of them are pretty forgettable. There are a few titles on that list that I’m pretty sure I’ve never heard of, let alone read. There are also some really great reads - I’d recommend Katie McGarry and Hannah Johnson. There are also some good fake Christmas boyfriends in A Family for Christmas by Jay Northcote. After hating The Charioteer the first time I read it, I bloody loved it this time, and the same thing happened with Rivers of London, so it’s worth giving things a second go. As always, I want to roll around in Lois McMaster Bujold forever. Forever. 

Anyway, feel free to ask me book questions whenever. I read the majority of these books between Jan and August but can refresh my memory if required :)

#waffling on about books

[dxmedstudent]

Thank you for answering my question of distributive justice! It's an interesting topic; I have watched part of the documentary called 'Fire In The Blood', it's about the pharmaceutical industry not providing HIV medicines to people who live in the global south, however I am very sceptical of some American healthcare documentaries because they tend to spread misinformation. Do you have any tips about how to tell if a medical documentary provides false information?

You’re welome :)I quite liked that documentary, it certainly makes you think about global access to essential (i.e. lifesaving) medicines, and that’s a topic I think is not discussed nearly enough. I think documentaries like that are great for getting the ball rolling, even though they might not have all the facts. There’s no easy way to know if information is reliable, bt some tips might include:

do they source information? i.e. tell us where data came from?

is where their data came from reliable?

is it from large studies? Meta analyses? Cochrane reviews?

did the people doing the research they are citing have their own agendas, and is their data truly representative?

what might they gain from critiquing this particular topic?

do they gain by getting someone else in trouble?

do they benefit financially from this at all?

do they benefit politically? socially?

do they present enough information to get a detailed picture?

how do they treat information which might not support their conclusion?

are the people who are making this documentary, or cited in it, remotely credible in the field in question? If they can’t find anyone credible to go on record, it’s worth considering why that may be.

Where do their peers stand in relation to their beliefs? i.e. do their views go against all current orthodoxy in their field (in which case they need to prove how they’ve disproved what was currently believed). There’s alway that 1 scientist who goes against the other 1000. But what information do they have that suggests everything else everyone else believes is wrong?

is the documentary mostly reliant on facts, or does it mostly use emotion to get things across? Use of emotion isn’t necessarily bad (some topics are very emotive, after all, and it can help us see the difference between numbers and real people who are suffering), but is there enough data or are they relying on gut-wrenching alone?

The key is this: always consider the possible motivations of whoever is giving you information. What could their agenda be? This is not to imply everyone is sinister; we all have agendas. Even me; I’m sitting here writing advice suggesting that you should question people’s agendas. My agenda seems to be that I want you all to question whatever anyone is telling you, and the reasons why they are telling you it. I work in healthcare and don’t like people being misled by fake news. So when you’re watching a documentary, you can think about what their agenda may be. This is also the lens through which we need to view research, too; what motivations might companies have for misrepresenting (or at least, representing in a certain light) their data? What can we do to make sure they stay honest? It’s basically a bit of a rabbit hole; if you read stuff like Ben Goldacre, it soon becomes clear that who is publishing a study, and how they choose to interpret it can make a big difference. Like, a really big difference. The next best thing is to stick to relatively reliable sources. The WHO or someone like that might not be perfect, but at least I can believe that their agenda is in line with helping people, whereas a multinational corporation’s agenda is almost always to prioritise profit before most other things. Ultimately, the only real way of knowing if what a documentary is saying is true, is to do your own research. Which is a time consuming and frequently challenging thing to do. Don’t let this put you off, though. Even though it’s sometimes hard to navigate, the answer to not having enough knowledge is to keep on going, and learn more. Rather than trying to avoid learning lest we get it wrong. If you realise that something you thought/believed is now considered wrong, that’s OK. Hope this helps!

#ask dx #askdx #documentaries #evaluating sources #it's a tough job #fire in the blood

[joshuahorn]

Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients

author: Ben Goldacre name: Joshua average rating: 4.09 book published: 2012 rating: 3 read at: 2019/08/23 date added: 2019/08/23 shelves: review: I read about half of this book, but I never finished it. I thought he made a lot of good points, but it got a bit repetitious so I haven't picked it up again to finish it.

#IFTTT #Goodreads #book review

[mostlysignssomeportents]

AI has been stagnating for a decade

MIT CS PhD student Davis Blalock undertook a review of papers documenting progress in "pruning" for machine learning (a critical means of eking out performance improvements), and found little progress for a decade, despite the authors' claims.

https://proceedings.mlsys.org/book/296.pdf

Rather, the improvements could be chalked up to variations in measurement - the papers' authors were choosing to benchmark their systems using metrics that made them look good, but when these benchmarks were normalized, the improvements largely vanished.

His work confirms the 2019 ACM SIGIR meta-analysis that confirmed that the field's "high-water mark … was actually set in 2009."

https://dl.acm.org/doi/abs/10.1145/3331184.3331340

Writing in Science, Matthew Hutson documents a series of these analyses that find little support for AI hype. Rather, the progress in AI seems to be an artifact of publishing bias from scientific journals.

https://www.sciencemag.org/news/2020/05/eye-catching-advances-some-ai-fields-are-not-real

This is a well-understood problem: journals like to document dramatic improvements, not incremental ones. So researchers who create new ML systems that perform existing tasks more efficiently are published with fanfare.

Researchers who tweak existing systems to match those performance gains languish in obscurity. Academic career advancement is predicated on publication, so research agendas are distorted to match publication bias, producing the illusion of a run of spectacular breakthroughs.

To maintain the illusion, researchers shy from comparisons with existing systems, creating bespoke benchmarks that cast their work in a good light. And since the field is growing fast, there aren't enough skilled reviewers to flag this stats-juking prior to publication.

These methodological issues are not limited to AI journals. As Ben Goldacre's 2012 book "Bad Pharma" documents, the most widely prescribed class of drugs is statins, and statins are (were?) not tested head to head.

https://boingboing.net/2012/11/06/bad-pharma-account-o.html

Rather, each new statin was compared to placebos. That means that there were several statins on the market, and yet we didn't know which one performed best, and this is the most widely prescribed class of drugs!

To their credit, many scholarly and scientific publishers are taking steps to fight publication bias.

My favorite is "registered reports" where researchers approach journals BEFORE they experiment.

The journals pre-commit to publishing the outcomes based on the salience of the research agenda and the rigor of their methodology - rather than basing their publication on how spectacular the finding is.

https://www.cos.io/rr

Image: Cryteria (modified): https://commons.wikimedia.org/wiki/File:HAL9000.svg

CC BY: https://creativecommons.org/licenses/by/3.0/deed.en

Gartner (modified): https://www.gartner.com/en/research/methodologies/gartner-hype-cycle

#pluralistic

[pharmaphorumuk]

Does the big pharma monster need taming?

Paul Tunnah reviews Hedley Rees’ ‘Taming the Big Pharma Monster: by Speaking Truth to Power’, which takes pharma to task for losing its way with patients.

It’s perhaps unsurprising that it’s hard to find critics of pharma that work ‘in’ the industry.

Any such individual working directly for a pharmaceutical or biotech company would effectively be throwing mud at themselves and anyone working in the vast surrounding service sector would be biting the hand that feeds them.

As such, I can’t think of a ‘Ben Goldacre’ of pharma, but – and I mean this in the nicest possible way – Hedley Rees is about as close as you will get when it comes to challenging the status quo. A ‘veteran’ of the sector in the truest sense of the word, Rees has decades of experience working within and consulting to pharma, mainly focussed on the supply chain and manufacturing side, but with an expert perspective far broader.

“A key theme of the book is the over-obsession with business success (often short-term) at the expense of driving real disruption and improved outcomes for patients.”

Rees was kind enough to share with me his latest book, ‘Taming the Big Pharma Monster: by Speaking Truth to Power’, so that I could share my views on it.

There is certainly a fair degree of frustration in the narrative within, but his perspective is well-informed as one might expect from an industry insider and, if the title might itself seem a bit damning, the optimist should take solace that he clearly believes change can happen, and the beast tamed, rather than needing to be put down – or being forced into extinction by outside disruptive forces, as many others have postulated could happen.

Some of the areas covered in Rees’ latest book will be familiar to those who read his earlier work, ‘Find it, File it, Flog it’, in detailing an industry that has somewhat lost its way in meeting the real unmet needs for patients and instead become too obsessed with purely how much revenue its portfolio can deliver.

But the book also contains some eye-opening reminders of how the pharma industry started out and where it used to be – facts that would seem absurd to anyone new to it since the turn of the century. For example, pretty much all pharmaceutical companies started out in the B2C space, not B2B, and the sales rep used to be held in much higher respect than today, representing a principle source of medical information and guidance for physicians. These were simpler days.

Rees outlines a number of areas where he feels the industry has lost its way as it has grown in complexity. Primarily, this has been a gradually lessened focus on the Development part of Research and Development, with much of the clinical trials process being outsourced along with other key areas such as supply chain.

In doing so, he suggests the industry has weakened its ability to translate science from the laboratory to the patient, drawing an analogy with the gambler who feels if he lays enough bets (pumps enough molecules into trials) then at least one will turn out a winner.

Another point that resonated with me was the over-obsession with market research and data, which is often misused to justify bad decisions or avoid making the right ones. The words of Henry Ford would be well heeded by pharma companies focussed on me-too or small, incremental innovation that only delivers a ‘faster horse’.

Rees also challenges the industry to rectify its imbalanced relationship with the regulatory bodies, where he sees the FDA, EMA etc. very firmly being allowed to adopt the elder stance in a parent-child relationship. An entirely appropriate focus on safety should not be at the expense of keeping regulators happy over challenging regulatory systems and processes when change is also needed there.

A key theme of the book is the over-obsession with business success (often short-term) at the expense of driving real disruption and improved outcomes for patients.

All of which rather begs the question of what Rees believes to be the solution.

Well, if there was a disappointment with the book it would be that it doesn’t offer one. However, in fairness to the author if the solution to re-inventing pharma was so simple that it could be captured in the final chapter of a book then there wouldn’t be a problem in the first place.

Instead, Rees outlines how we need to dismiss the oft-quoted notion that pharma is too different to other industries to learn from them. He elaborates on the socio-technical systems at play in other successful organisations like Apple, Amazon and even the Welsh Rugby Union team. On the latter point he has an inherent national bias but given Wales’ performance in the Six Nations last year it’s hard to argue with him.

However, he also outlines how pharma needs to focus more on a people-purpose system, where the business efficiency and agility of socio-technical systems are amplified – and focussed in the right direction – by a clear purpose for achieving something more than just commercial success.

Indeed, the greatest companies are driven by visions, not brands, such as Tesla’s desire to eliminate our dependency on fossil fuels. These are things that bind workforces together and galvanize them in the right direction. For sure, every pharma company talks about ‘patient centricity’ but how far into any of their organisations does this really remain the key driver?

The greatest companies, with the greatest visions, are driven by the greatest leaders and, as the book’s title hints, it is those at the top that need to find the solutions and drive them forwards.

At its core, this book is a call-to-arms to bring the right experts together to find a new model for pharma and a way of ‘taming the monster’, but it also calls out to those at the helm of these vast, global companies to listen.

Is big pharma a monster that needs taming? Some would argue it’s doing perfectly fine, but that doesn’t mean it cannot do better and, at a time when change is the only constant, adaptation is a necessity to remain viable.

‘Taming the Big Pharma Monster’ certainly made me think and raised points that I have not considered before. Whatever your belief on how effective pharma is and the need, or lack of, for change, it’s well worth a read.

‘Taming the Big Pharma Monster: by Speaking Truth to Power’, by Hedley Rees, is available now from Amazon in Kindle and paperback format.

About the author

Dr Paul Tunnah founded pharmaphorum in 2009, which is a content and communications company offering industry leading publications (www.pharmaphorum.com) and a strategic consultancy (www.pharmaphorumconnect.com). He is a recognised author, speaker and industry advisor on content marketing, communications and digital innovation, having worked with many of the world’s leading pharmaceutical companies and the broader ecosystem of healthcare organisations.

Connect with Dr Tunnah at https://www.linkedin.com/in/paultunnah/ or email [email protected].

The post Does the big pharma monster need taming? appeared first on Pharmaphorum.

from Pharmaphorum https://pharmaphorum.com/views-analysis-sales-marketing/does-the-big-pharma-monster-need-taming/

[incessantlystudying]

Wider Reading ||

The following books are a mixture of texts focusing on science, psychology, and English. I am personally going to be reading some of the books from each of the sections for my own wider reading outside of the classroom. Once I have read any of the books I will do a detailed review of it and whether I recommend it or not. 

Science // focusing on Pharmacy and Medicine: 

• The Selfish Gene - Richard Dawkins || The reader will come away with a clear understanding of kin selection, evolutionary stable strategies, and evolutionary theories of animal behavior. https://www.amazon.co.uk/Selfish-Gene-Anniversary-Landmark-Science/dp/0198788606/ref=pd_lpo_sbs_14_img_0?_encoding=UTF8&psc=1&refRID=KQNSGNESYN68HTENJ8HX

• Bad Science - Ben Goldacre ||  In this eye-opening book he takes on the MMR hoax and misleading cosmetics ads, acupuncture and homeopathy, vitamins and mankind’s vexed relationship with all manner of ‘toxins’. https://www.amazon.co.uk/d/Books/Bad-Science-Ben-Goldacre/000728487X/ref=sr_1_1?s=books&ie=UTF8&qid=1497205432&sr=1-1&keywords=bad+science

• Advice to a Young Scientist - P.B. Medawar || To those interested in a life in science, Sir Peter Medawar, Nobel laureate, deflates the myths of invincibility, superiority, and genius instead, he demonstrates it is common sense and an inquiring mind that are essential to the scientist's calling. https://www.amazon.co.uk/Advice-Young-Scientist-Foundation-Science/dp/0465000924/ref=sr_1_1?s=books&ie=UTF8&qid=1497205613&sr=1-1&keywords=advice+to+a+young+scientist

• The Checklist Manifesto - Atul Gawande || In this book Gawande explains how checklists can improve care and save lives, as well as benefit many other areas of society, including investing and restaurants. It includes examples of how he’s seen it work and it’s also reader-friendly if you aren’t prepared for lots of medical jargon. https://www.amazon.co.uk/d/Books/Checklist-Manifesto-How-Things-Right-Atul-Gawande/1846683149/ref=sr_1_1?s=books&ie=UTF8&qid=1497205812&sr=1-1&keywords=the+checklist+manifesto

Psychology // do have some scientific background: 

• The Man who Mistook his Wife for a Hat - Oliver Sacks || Oliver Sacks recounts the stories of patients lost in the bizarre, apparently inescapable world of neurological disorders. These are case studies of people who have lost their memories and with them the greater part of their pasts; who are no longer able to recognize people or common objects; whose limbs have become alien; who are afflicted and yet are gifted with uncanny artistic or mathematical talents. https://www.amazon.co.uk/d/Books/Man-Who-Mistook-His-Wife/0330523627/ref=sr_1_1?s=books&ie=UTF8&qid=1497207099&sr=1-1&keywords=the+man+who+mistook+his+wife+for+a+hat 

• Nature via Nurture - Matt Ridley || Armed with the extraordinary new discoveries about our genes, Ridley turns his attention to the nature versus nurture debate to bring the first popular account of the roots of human behaviour. https://www.amazon.co.uk/d/Books/Nature-Nurture-Genes-experience-makes-Ridley-Paperback/B011T7GLQO/ref=sr_1_3?s=books&ie=UTF8&qid=1497207393&sr=1-3&keywords=nature+via+nurture

• The Language Instict - Steven Pinker || The world's expert on language and mind lucidly explains everything you always wanted to know about language: how it works, how children learn it, how it changes, how the brain computes it, and how it evolved. With deft use of examples of humor and wordplay. https://www.amazon.co.uk/Language-Instinct-How-Mind-Creates/dp/014198077X/ref=sr_1_1?s=books&ie=UTF8&qid=1497207494&sr=1-1&keywords=the+language+instinct

English // some of these books just seem interesting to me: 

• Jane Eyre - Charlotte Brontë || Jane's journey from a troubled childhood to independence - and her turbulent love affair with the enigmatic Mr Rochester - electrified Victorian readers with its narrative power. https://www.amazon.co.uk/gp/product/1847493734/ref=ox_sc_act_title_6?smid=A3P5ROKL5A1OLE&psc=1

• Pride and Prejudice - Jane Austen || The pride of high-ranking Mr Darcy and the prejudice of middle-class Elizabeth Bennet conduct an absorbing dance through the rigid social hierarchies of early-nineteenth-century England, with the passion of the two unlikely lovers growing as their union seems ever more improbable. https://www.amazon.co.uk/gp/product/1847493696/ref=ox_sc_act_title_5?smid=A3P5ROKL5A1OLE&psc=1

• Wuthering Heights - Emily Brontë || The tale of Heathcliff and Cathy's ungovernable love and suffering, and the havoc that their passion wreaks on the families of the Earnshaws and the Lintons. https://www.amazon.co.uk/gp/product/1847493211/ref=ox_sc_act_title_3?smid=A3P5ROKL5A1OLE&psc=1

• Sense and Sensibility - Jane Austen ||  The story of two Dashwood sisters who embody the conflict between the oppressive nature of 'civilised' society and the human desire for romantic passion. However, there is far more to this story of two daughters made homeless by the death of their father. https://www.amazon.co.uk/gp/product/1847494846/ref=ox_sc_act_title_2?smid=A3P5ROKL5A1OLE&psc=1 

(in class we are also reading The Lovely Bones, A Streetcar Named Desire and The Great Gatsby)

If you have bought any of these books and have posted about them on tumblr, please don’t hesitate to tag me in them, it would be highly appreciated. And if you have any more recommendations that I can add to this list, do leave them in the comments section. Like I have said before, if you do want reviews of the books that I will buy, do let me know!! 

- mariah x

#richard dawkins #the selfish gene #bad science #ben goldacre #biology #chemistry #wider reading #aslevel #alevel #english #studyblr #reading #books #the great gatsby #the lovely bones #a streetcar named desire #sense and sensibility #jane austen #emily bronte #charlotte bronte #wuthering heights #jane eyre #pride and prejudice #the man who mistook his wife for a hat #oliver sacks #psychology

[luxe-pauvre]

What did you learn about people? How might a person who is not studying develop their bullshit-ometer?

“What did you learn about people” is much too broad to answer given how much is covered in a three year bachelors degree. Everything from theories of the self, errors biases and heuristics, attitudes and emotions, theories behind behaviours, social influence, group affiliation, psychological development from childhood to adulthood and its effect, models of personality and individual differences, memory, how we learn, the psychology of choice and decisions, and the genetic/biological/social/environmental factors of all of the above and what happens when it goes wrong and becomes pathology.

In terms of developing a bullshit-ometer, or improving your judgement and understanding of evidence, the key is practice. For a module in my first year we were given a paper every week and a prompt sheet to fill in that effectively helped you tear the paper apart. Prompts included everything from the method and sample size, to the statistical tests used, whether they were used appropriately, and whether all of the assumptions of each test were met, etc. It would take me upwards of two hours to get through a ten page paper, and even then I’d miss things. Three years on, I can skim a paper or article or hear a person’s argument, spot any major red flags, and tear it apart under exam conditions in thirty minutes. It takes a lot of time and work to be able to do it quickly. Having it embedded as a philosophy into everything you’re learning helps as you start doing it unconsciously eventually.

Resources:

Bad Science by Ben Goldacre. To me, an absolutely essential read.

The Art of Statistics by David Spiegelhalter. Spiegelhalter is a statistical genius, and he’s now spending his time trying to change the way statistics is taught, moving it away from learning loads of formulas and then trying to figure out how they relate to evidence, towards the PPDAC (problem, plan, data, analysis, conclusion) model. To understand evidence and pick up the misuse of statistics (aka bullshit) you need at least a basic understand of stats. This book does it perfectly, in plain English, with interesting examples. I wish it had been published when I first started my degree.

I Think You’ll Find It’s A Bit More Complicated Than That by Ben Goldacre. This is a collection of most of Ben Goldacre’s columns which used to appear in The Guardian, in which he takes a claim in the media or a new study and tears it apart. It’s an interesting read, might change your perception on a few things, and is him tackling bullshit in practice.

Reckoning With Risk by Gerd Gigerenzer. There are lots of complex statistics in this (which he signposts and you can just pass over), but understanding how statistics of risk work, and what they mean, will completely change how you read and assess a lot of claims made in the news.

The Students 4 Best Evidence blog. It mainly covers evidence based medicine, but the key concepts transfer to all research and claims outside of medicine. Anything under the bias, critical thinking, intro to evidence-based practice, and statistics topics is relevant. Particularly anything tagged ‘tutorials and fundamentals’. Their Key Concepts Archive is a good place to start.

The Testing Treatments website. Again, covers medicine, but most of the points generalise out. Under each concept, say ‘association is not causation’, there is a ‘find learning resources’ link that will find papers, online courses/modules, and books about that concept.

Cochrane Training. Cochrane are the gods of the systematic review. All their online learning modules surrounding assessing evidence are here.

Think Again: How to Reason and Argue, either the book, or the online course. The perfect crash course in reasoning, arguing, avoiding fallacies, picking apart other people’s arguments, and finding bullshit.

The Clearer Thinking website has a range of tools/mini modules. Relevant ones here:

How well can you tell reality from B.S.?

Interpreting evidence

Belief challenger, making your views more accurate

Guess which experiments replicate

More books.

A Field Guide to Lies and Statistics: A Neuroscientist on How to Make Sense of a Complex World by Daniel Levitin

How To Lie With Statistics by Darrell Huff

#The Clearer Thinking mini modules are probably the best place to start. They're easy to follow and are free online.

[spanlish-blog]

A surprising amount of medical research isn’t made public. That's dangerous.

When the results of clinical trials aren’t made public, the consequences can be dangerous — and potentially deadly.

Consider the case of the anti-depressant Paxil, produced by the drug company SmithKline Beecham (now part of GlaxoSmithKline). GSK got approval from the FDA in 1999 for treatment of depression in adults, but not in teenagers. That meant that while doctors could prescribe the drug to adolescents — a so-called “off label” prescription — GSK could not promote the drug to doctors for that purpose.

But the company did just that, according to criminal and civil complaints filed by the Justice Department and a related suit by then-New York Attorney General Eliot Spitzer. What’s more, the Justice Department claimed, GSK selectively and misleadingly released information about three studies it had conducted of the drug: It hired a consulting company to write a journal article that played up evidence from one study that the drug worked better as a treatment for pediatric depression than a placebo, played down (better) evidence from the same study that it hadn’t, and soft-pedaled the side effects.

These side effects included suicidal thoughts and actions.

It buried two other studies, the Justice Department noted, in which Paxil had failed to show efficacy in treating depression.

In the end, GSK paid the US government $3 billion in fines for illegal and misleading promotion Paxil and other drugs, and, in 2004, the FDA required manufacturers to put a “black box” warning label on Paxil and other antidepressants about the potential risks of increased suicidal thoughts and actions when used in children and teenagers.

In 2015, researchers published a second look at the data and clinical study reports underlying the study GSK had relied on for promoting Paxil’s use in adolescents. They affirmed the drug “was ineffective and unsafe in this study.” This was part of a much bigger problem afflicting drug research, they said: “There is a lack of access to data from most clinical randomised controlled trials, making it difficult to detect biased reporting.”

You might think a crisis of that scope, involving teenage suicide and billions of dollars, would rouse the scientific establishment to make sure that the results of all clinical trials be made public. But it didn’t happen. Despite public campaigns, and even legal requirements, many clinical trials still report results publicly late or not at all. What, if anything, will prod researchers — and universities and drug companies — to act?

The issue at stake here isn’t the FDA’s approval process. The FDA makes drugmakers go through an intensive application process before it deems new drugs or medical devices safe and effective. When drug companies seek FDA approval for a drug or device, they aren’t allowed to cherry-pick which results they report. The agency requires that companies submit plans outlining all trials they’ll submit for approval, and scrutinizes the trial results (even conducting its own statistical review). But the FDA does not ensure that all of those trial results also enter the public view.

That means doctors and researchers trying to get a full picture of a drug’s effects are out of luck.

During the Paxil legal battles, there was not yet a law in the United States requiring that clinical trials publicly share their results. What is remarkable is that today there is such a law — yet researchers and companies often ignore it.

Some researchers do share their trial results through journal publications. However, one synthesis of studies on the topic found that from one quarter to one half of clinical trials are never published — or are published only years after trials end. In that same report, from 2012, new research found that roughly half of all trials funded by the National Institutes of Health remained unpublished 30 months after the end of a trial (though 68 percent were ultimately published at some point). The reasons for delays and non-publication vary, from researchers’ lack of interest in reporting negative results — the infamous “file drawer problem” — to constraints on the time of researchers.

Progress on transparency legislation

The research transparency movement has been gaining steam, but still can’t declare victory. A 1997 federal requirement mandated that researchers register some trials in a public database (those pertaining to serious or life-threatening diseases). Then in 2005, an association of medical journals started requiring that any study published in one of their publications be registered in an online database before the time of first patient enrollment. That didn’t guarantee results would be made public, but it at least provided an incentive to researchers to make some information about the trial available.

A few years later, an even bigger shift occurred. Congress passed the FDA Amendments Act of 2007, which required that “applicable clinical trials” register and publicly report results within one year of trial completion. (The requirement excluded some trials, such as Phase 1 trials of drug safety as opposed to efficacy.) The site ClinicalTrials.gov, run by the National Library of Medicine, had started posting general information about trials in 2000 — so sick people could sign up, for example — but now became the place where those results were posted. And the law included a penalty: Those who failed to report on time could face fines of up to $10,000 per day.

Yet nearly a decade later, it’s clear that many researchers and institutions basically ignore the law. They report trials late or not at all, but the FDA has yet to levy a fine. An investigation by the health journalism organization STAT, published in December 2015, looked at about 9,000 trials across 98 institutions, from 2008 to 2015. Of trials that were required by the FDA to report their results, 74 percent of industry trials were either not reported or reported late. The figure, maybe surprisingly, was even worse for academic institutions: 90 percent late or unreported.

By STAT’s calculation, if the FDA had enforced the law using the $10,000-per-day day fine, it could have collected over $25 billion since 2008, funding the agency several times over.

And the thrust of STAT’s conclusions has been echoed by other investigations. (After the Paxil episode, GSK, for its part, has been posting trial results to the company website; it also fares better than many other companies and institutions in several recent transparency scorecards.)

A medical culture too comfortable with non-publication and non-reporting

Why hasn’t the FDA enforced the 2007 law on publicizing results, and why hasn’t it levied financial penalties?

One reason, according to several of those that I spoke with, including Deborah Zarin, director of ClinicalTrials.gov, is that the 2007 law contained ambiguity about some of the requirements, including which trials were subject to the law.

Jennifer Miller, founder of Bioethics International, agrees that some researchers have been, at least till very recently, uncertain about whether the 2007 law applied to their trial. The language used in the law to describe applicable studies included the phrase “controlled clinical trials,” and there was some uncertainty about which trials would count as “controlled.” “How can you impose fines on an ambiguous law?” Miller said.

Researchers I spoke to emphasized, however, that clinical trial results are not just a legal issue: It’s an ethical matter, too. Regardless of the law, shouldn’t reporting results be part of the culture of doing clinical trials?

If so, there’s a problem with the current culture. Researchers are rewarded primarily for publishing as much as possible in the highest-ranked journals that they can, says Joseph Ross, an associate professor of medicine at Yale and an associate editor at JAMA Internal Medicine. “There’s no clear incentive for investigators to have a member of their staff do everything required by ClinicalTrials.gov. It gets deprioritized because it is a substantial amount of work, and investigators don’t put it at the top of their list.”

Competition may play a role. Someone who is running a trial might think: “My competitor has similar molecules in the pipeline, why should I tell them why it failed so that they don’t pump money into it?” says Tomasz Sablinski, co-founder of the drug development firm Transparency Life Sciences, who was previously with the pharmaceutical company Novartis.

How to change the norms, so that there’s an internal commitment to reporting results from researchers and institutions? Steven Goodman, an associate dean and professor of medicine at Stanford, notes that it will be important for institutions to provide education to researchers on how to report results, and pay for staff support.

AllTrials, a nonprofit organization founded by medical doctor and public intellectual Ben Goldacre, took on the mission of pushing for clinical trial transparency. AllTrials, which started in the UK and also has a campaign in the US, thinks the laws don’t go far enough: None of the regulations governing clinical trial reporting require sharing results retroactively (that is, before the laws are passed), which leaves many results for already-approved drugs unreported.

Goldacre also collaborated with a web developer and scientist, Anna Powell-Smith, to create the automatically updated Trials Tracker. The tracker scans ClinicalTrials.gov and PubMed to identify how many clinical trials have been reported by companies and institutions with 30 clinical trials or more. After working on transparency for many years, Goldacre believes “naming and shaming” is the main thing that will really grab the attention of those who haven’t reported their trials.

Momentum seems to be gathering, although the Trump administration’s commitment to the cause remains uncertain. In September 2016, Health and Human Services, which oversees the FDA, issued a "final rule" clarifying and expanding the requirements of the 2007 law: It specifies what was meant by “controlled clinical trials,” among other things. (“All interventional studies with prespecified outcome measures.”) The rule also expands the scope of the requirement to include results from certain trials of new drugs and devices which haven’t yet been approved by the FDA.

The National Institutes of Health (NIH) also announced a policy in September 2016 requiring that all its grant recipients publicly report their clinical trial results. The NIH policy and HHS final rule took effect on January 18. Will the organizations ramp up pressure to comply with the law, and will researchers take this obligation seriously? It’s too soon to say.

The obligation to research participants

One reason to care about whether clinical trial results are shared is that hundreds of thousands of patients have put themselves on the line as research subjects. We owe it to them not to let the information their participation enabled get stuck in a file drawer.

“If we made a pact with a person to enter into this experiment, then we have an ethical and scientific obligation to have the results out there, no matter what happened,” said Stanford’s Goodman.

Everyone who conducts a clinical trial should report their results, whatever the outcome. It’s the law, and it’s past time that it was followed. When researchers fail to do so, we should point that out early and often — for the sake of public health.

Stephanie Wykstra is a freelance writer and consultant with a focus on research transparency. She has recently worked with nonprofits including AllTrials USA and Robert Wood Johnson Foundation. Twitter: @Swykstr.

The Big Idea is Vox’s home for smart discussion of the most important issues and ideas in politics, science, and culture — typically by outside contributors. If you have an idea for a piece, pitch us at [email protected].

Source: A surprising amount of medical research isn’t made public. That's dangerous. Source: A surprising amount of medical research isn’t made public. That's dangerous.

#vox

[goldacreestates]

Villa for Sale in Corralejo, Fuerteventura

Price: €315,000

This is a lovely 3 bedroom, 3 bathroom villa with a private pool, a basement with a garage/utility room, a private roof terrace with amazing views, and great interior spaces.

It's location within Corralejo means you are quite central for getting to the great bars and restaurants and just a few minutes drive to the dunas.

You can read a full description and see a full set of pictures by following this link. Then contact us via email or phone. https://tinyurl.com/t3he7ny

Tel: [phone] E-mail: [email protected]

As you may be aware from all the news regarding COVID-19 the Spanish government has announced a decree which is affecting all businesses in terms of their opening hours.

Our office currently is only manned for a few hours a day with minimum necessary staff.

However GoldAcre Estates is still working to assist you with your enquiries, but some members of our team will be working on a Rota basis so if you could re-direct your enquiry to [email protected] we will ensure your enquiry is redirected and reviewed as well as being answered as quickly as possible by us.

#pooltime #sunshine #holidayhome #fuerteventura #canaryislands #movetothesun #aplaceinthesun

[warninggraphiccontent]

12 June 2020

Tangfastic

Audrey Tang, Taiwanese digital minister, was fizzing with energy and insight when I interviewed her for the IfG this week.

We covered how Taiwan has kept its coronavirus cases astonishingly low (partly through quarantine and 'digital fences'), how it has fought misinformation, its innovative work on digital government and public engagement in general, and the most poetic job description you'll ever encounter.

Watch the whole thing here, and read/watch much more here.

In other news:

On the subject of job descriptions, a good selection of jobs this week. MoJ's Sam Tazzyman - you may remember him from an excellent Data Bites presentation - and the ESRC asked me to highlight theirs, while Full Fact also have an excellent opportunity - you'll find them all at the end of the Meta data section below. And an irregular reminder that if you're looking for data/digital jobs, Jukesie's newsletter is still the best place to look.

On the subject of Data Bites (any excuse), the next one will be at 6pm on Wednesday 1 July, supported by ADR UK. It's a great line up - full details shortly. Catch up on previous ones in the meantime.

Honestly, what is it with the completely unnecessary secrecy? The government is storing up serious problems for itself when it comes to earning trust in how it's using our data.

It was a bright cool day in June, and Nineteen Eighty-Four was celebrating 71 years since it was first published.

There are some good #BlackLivesMatter-related links from FiveThirtyEight below. But you should read this first.

See you next week

Gavin

Today's links:

Tips, tech, etc

Employees must be consulted on technologies monitoring the return to work (Computer Weekly)

MPs and their offices during lockdown - how we've helped (Parliamentary Digital Service)

Ten tips for facilitating online workshops (NPC)

Elephant safaris: organising meetings that help us grasp complexity (Geoff Mulgan)

Graphic content

Viral content: cases

How the Coronavirus Compares With 100 Years of Deadly Events* (New York Times, via Marcus)

Coronavirus Map: Tracking the Global Outbreak (New York Times)

Coronavirus cases are surging in Latin America* (The Economist)

Is the world making progress against the pandemic? We built the chart to answer this question (Our World in Data)

This chart compares the outbreaks of coronavirus in four parts of Wales (David James)

Coronavirus: Looking for R is about the geography as well as the maths* (The Times)

Brazil stops releasing Covid-19 death toll and wipes data from official site (The Guardian)

As coronavirus cases rise nationwide, public health experts urge caution* (Washington Post)

Viral content: consequences

Business impact of coronavirus, analysis over time, UK (ONS)

How to avoid the virus as the world reopens (FT)

What to Make of the Rebound in the U.S. Jobs Report* (New York Times)

The Economic Pain That the Unemployment Rate Leaves Out* (New York Times)

EUROPEAN SOLIDARITY TRACKER (ECFR)

That CNBC chart (CNBC, via everyone)

Psychopathic charts, lines that should be bars, and picking cherries (Alberto Cairo)

GDP monthly estimate, UK: April 2020 (ONS)

UK’s virus recovery lags behind European peers* (FT)

#BlackLivesMatter

#StolenSeriesbyAB (Adrian Brandon)

How Public Opinion Has Moved on Black Lives Matter* (The Upshot)

US boardrooms fail to reflect country’s demographics* (FT)

Protests spread over police shootings. Police promised reforms. Every year, they still shoot and kill nearly 1,000 people.* (Washington Post)

Charts that Count: how badly are African Americans affected by police brutality?* (FT)

Do You Know How Divided White And Black Americans Are On Racism? (FiveThirtyEight - but also, read this)

Why would you want to honour this? (Mona Chalabi)

BME deaths in custody, 1991-2014 (Institute of Race Relations)

Coronavirus fuels black America’s sense of injustice (FT)

George Floyd is remembered around the world* (The Economist)

Experience the sights and sounds of a historic protest in the nation’s capital* (Washington Post)

Patterns Of Death In The South Still Show The Outlines Of Slavery (FiveThirtyEight, April 2017)

Extensive Data Shows Punishing Reach of Racism for Black Boys* (New York Times, March 2018)

US politics

What to remember about polls as Trump continues to disparage — and invent — them* (Washington Post, via Marcus)

Forecasting the US elections* (The Economist)

Will protests help Donald Trump as they did Richard Nixon in 1968?* (The Economist)

Everything else

Services and Brexit (UK in a Changing Europe)

Ministerial directions (Oliver for IfG - being updated today)

A virtual parliament was well equipped to make progress on the government’s legislative agenda (Alice/Hannah for IfG)

A U.S. Secret Weapon in A.I.: Chinese Talent* (New York Times)

A study names firms who buy products from areas with deforestation* (The Economist)

Explore connected papers in a visual graph (Connected Papers)

A national aggregator for current and historical planning information (UK PlanIt)

#dataviz

A journalist’s introduction to network analysis (Paul Bradshaw)

How We Accidentally Wrote Our Most Popular Story Yet and What We Learnt in the Process (NZZ)

Meta data

Viral content: trace-y island

Boris Johnson’s patience wears thin over tracing app* (FT)

Coronavirus: Ministers consider NHS contact-tracing app rethink (BBC News)

NHS Covid-19 data store doc raises questions about link to contact tracing app (NS Tech)

Under pressure, UK government releases NHS COVID data deals with big tech (openDemocracy)

Revealed: Trump backer’s spy firm lobbied Gove, Hancock before winning key NHS contract (openDemocracy)

No, coronavirus apps don’t need 60% adoption to be effective* (MIT Technology Review)

Matt Hancock says the Test and Trace system is on its way to being “world class” Is that justified? I've spent the day trying to find out (Rowland Manthorpe)

Babylon Health admits GP app suffered a data breach (BBC News)

DHSC 'satisfied' after investigating Serco contract tracers data breach (Civil Service World)

Most data sent to Greater Manchester by national test and trace system 'was so rubbish it had to be returned' (Manchester Evening News)

Coronavirus: Police planning their own contact tracing system over concerns about government's version (Sky News)

Viral content: everything else

How Taiwan became a coronavirus success story: in conversation with Audrey Tang (IfG)

Struck (again) by how much lack of data on social care made this crisis hard to respond to (NAO via Graham)

Brazil reports 679 new coronavirus deaths amid controversy over data (Reuters)

How geospatial data is supporting the UK’s response to the coronavirus pandemic (Geospatial Commission)

DVLA and HMRC – working together during the coronavirus pandemic (DVLA)

Using detailed, frequently updated health data in a secure database, providing up to date information about patient care during the COVID-19 pandemic (DECOVID)

What data and digital stuff have you seen working really WELL during Covid? (Ben Goldacre)

Overload in the time of Covid (The Occasional Informationist)

Volte face?

IBM will no longer offer, develop, or research facial recognition technology (The Verge)

Although... (Olivia Solon)

We are implementing a one-year moratorium on police use of Rekognition (Amazon)

Microsoft won't sell police its facial recognition technology, following similar moves by Amazon and IBM* (Washington Post)

Identity parade

Meet the Identity and Attributes Exchange – GDS’s future for digital identity after Verify (Computer Weekly)

Digital Identity: The Missing Piece of the Government’s Exit Strategy (Institute for Global Change)

AI

Academics call on nations to work together on A.I. and ensure it benefits all of humanity (CNBC)

Microsoft's robot editor confuses mixed-race Little Mix singers (The Guardian, via Alice and Tim)

The ‘dark matter’ of visual data can help AI understand images like humans (The Next Web)

Big tech

Oral evidence: Online Harms and Disinformation - YouTube, Google, Facebook, Twitter (Digital, Culture, Media and Sport Sub-Committee on Online Harms and Disinformation)

Google got rich from your data. DuckDuckGo is fighting back* (Wired)

Wendy Liu: “Silicon Valley didn’t create the pandemic, but they’re profiting from it”* (New Statesman)

Everything else

New advice to help councils fight procurement fraud (MHCLG)

Liz Truss launches future trade strategy for UK tech industry (DIT/DCMS)

How data-driven democracy both helps and hinders politics (LSE British Politics and Policy)

Data firms pitch profiling tools at UK councils* (FT)

A Moment of Change: Challenges and Opportunities When Covering Hate Speech and Mis/Disinformation (MIT Media Lab)

Rendering Knowledge (Dave Snowden - old, but resurfaced via Glyn)

Selected Readings on Open Data Legislation and Policy (Open Data Policy Lab)

Storytelling with data podcast

Introducing the GOV.UK Data Labs (GDS - see also relevant Data Bites)

Best practice guidance and tools for geospatial data managers (Geospatial Commission - Owen's take)

Opportunities

EVENT: Launch of the UK's Geospatial Strategy (Geospatial Commission)

EVENT: Data, the Global South and the NHS: risks from new digital trade rules (Trade Justice Movement)

EVENT: Data, power, and the pandemic (Benchmark Initiative)

JOB: Head of Policy and Advocacy (Full Fact)

JOBS: Senior Data Engineer in the Data & Analytical Services Directorate and Lead Data Engineer in the Data & Analytical Services Directorate (MoJ)

JOB: Head of Data and Search (UK Parliament Digital Service)

JOBS: Citizens Advice is hiring into our technology team (James Plunkett)

JOB: Director, DDaT Function Strategy (GDS)

JOB: Deputy Director for Public Policy (ESRC)

And finally...

A behind-the-scenes glimpse into the making of our @instituteforgov charts (Cath/Alice)

Animal Crossing’s massive popularity has made it less like paradise and more like Wall Street* (Washington Post)

The #opendata on every vineyard in France and which AOC wine grows in it (Tom Forth)