Finding the truth through medical Journalism
17:30 Tuesday June 19th
Shelley Jofre is Editor of BBC Scotland’s investigations unit. She previously worked for 15 years as a Correspondent on Panorama, and developed a particular focus on evaluating the risks versus benefits of SSRI antidepressants.
Shelley’s award-winning films about Seroxat resulted in the antidepressant being contraindicated in under-18s and prompted an overhaul of the Yellow Card Reporting System, allowing patients for the first time to report adverse effects directly to the regulator.
Without a medical background, Shelley unravelled the truth about the now-notorious Study 329. That clinical trial – which had been peer-reviewed and published in a respected US medical journal – stated Seroxat was “safe and effective” in the paediatric population. Shelley’s investigation revealed the opposite to be the case; the trial showed no benefit in depressed children but significant harms.
Her investigative work exposed the prevalence of ghost-writing in medical journals and the payments made by drug companies to Key Opinion Leaders (KOLs) to try to influence clinicians to prescribe medicines where there evidence base is at best uncertain, at worst negative.
Jet Schouten (AVROTROS)
Sling The Mesh – how I stumbled into the biggest women’s health scandal of our generation
I’ve been a regional newspaper journalist since 1990, with a passion for human interest stories and a mission to take jargon-heavy documents and turn them into plain English.
For 28 years this has involved planning agendas at local councils, court reporting, fund raising stories, inquests, animal rescues. Disgruntled local resident associations, the bread and butter of any regional newspaper across the country. I love being part of a local community and being their voice for the good, the bad and the ugly -the lows and the highs of every day life.
So it is with this background that I was unwittingly thrown into the murky world of medical corruption and digging out the problem with pelvic mesh implants – then writing about it.
I didn’t mean to get involved, I certainly didn’t set out to found Sling The Mesh, and had no idea it would become the biggest global support network for mesh injured women, and some men who have hernia mesh, at a staggering 6,000 members.
I just happened to make the fatal mistake of trusting my surgeon and signing up for what I was told was a simple, 20 minute, gold standard fix for stress incontinence – suffered thanks to two babies and a passion for high impact exercise.
From superfit mum to compromised by daily pain and a surgeon who belittled my suffering, I was shocked to say the least. Three years later I am still shocked as I learn more about the shambolic medical device regulation system that means Ikea flat pack furniture gets more safety checks than a permanently implanted device. Compare that to drugs that take an average of 10 years to get to market yet permanent devices can be passed with a cursory nod of equivalence
Shocked that the science journals are full of all sorts of mischief. Who knew? I certainly didn’t until this. With trials that are short term, some p-hacked, research that uses quality of life surveys deliberately designed to not capture suffering, surgeons who only look at efficacy and not risks to life quality. Add in research leaders who have conflicts with industry, trial cohorts of as low as 58 to “prove” devices are safe. Abstracts that don’t reflect the truth contained within the paper but to a busy medic would show a positive spin. It came as a real shock.
Next came the jargon. All sorts of terms, references and every day science lingo to turn into plain English to make stories palatable to readers.
My aim continues to be to help empower women in the campaign with knowledge so they are confident to stand up and fight. Because with knowledge comes much power.
Many things have upset me about the mesh implant disaster but one that really stands out is that women had been fighting for a good 8 years until I came on the scene. They had all the information the research, the statistics, but nobody with the power to effect change listened. It took a journalist to be mesh injured to get this out in the media. The knock-on effect has been that the politicians became interested, Government realised they needed to step in. To effect real change. Sadly it often takes journalists shining a spotlight on corruption for anything to happen
For the mesh implant disaster, that journalist just happened to be me.
Deborah Cohen is an award-winning freelance medically qualified journalist. During her medical training in Manchester and Rennes, she soon realized that she had a tendency to question what she was told – which doesn’t always go down well in medical training – so intercalated in journalism. This was a liberating experience that encouraged questioning of authority, freedom of thought and creativity – all of which may be lacking in medical training.
After qualifying, Deborah edited various sections of The BMJ before becoming the first investigations editor of a medical journal. She has written about many medical, research and scientific issues including drug and medical device regulation, access to preclinical and clinical data, cost of medicines, research integrity and conflicts of interest.
Deborah has conducted data driven stories collaboratively with international media and the Centre of Evidence Based Medicine, which they’ve dubbed ‘investigative epidemiology’. This combines journalism with epidemiology using prespecified protocols and systematic review for robustness. The journalism provides a social and political context to explain the research data. The output has been published in medical journals and underpinned programmes on BBC’s Newsnight, Panorama, File on 4, and also Channel 4 News and Dispatches.