Too many (pay) walls--not enough bridges

I thought it was just me. I bristle at all of the pay walls, sponsored content, and monetization of conversations that matter. Or should matter. How can we have meaningful dialogue if access to the conversation is stratified by who is willing or able to pay to listen?

When I was a newbie medical writer my contract contained a requirement that I be provided with all requested references. A few earlier projects had been completed with me footing the bill or having to travel to a nearby medical library. For the first go-around, they would send the freely available articles but try and substitute the pay wall articles with just the abstracts. Nope. Not good enough.

​I teach writers that the devil is in the details. And by details I mean methodology and results sections. What do you think the clinical landscape would look like if we only wrote about articles we could freely read allowing paywalls to retain part (arguably, the majority) of research papers? I tell you this story simply to own up to a source of the triggering solicited when being poked to pay up or look the other way.

Don't get me wrong, I have access to many journals through my press credentials, access to a fine local academic library, and even the National Press Club library. I also pay a few Patreon accounts, news subscriptions (NY Times), and a few others like Paris Review and Harper's Weekly.

What I don't have is a bottomless wallet to pay for vanity podcast subscriptions (I don't mind listening to your ad roll for free access), digital news aggregators, and for profit content morphing into sponsored content. I remember bumping into a sparkly new journalist at one of the big online news sites. We had gathered for a medical research discussion and he said he was so excited to have been hired. Admitting he knew nothing about medicine or healthcare he shared that the hiring team had told him--"that's okay, we can teach you what you need to know."--gasp.

We build too many walls and not enough bridges--Isaac Newton

A recent podcast by Manoush Zomorodi and Jen Poyant shared the not so common plight of a creative voluntarily shutting down her business. Spoiler alert--she refused to lower quality, commoditize her contributions, or become another monetized blog selling out for profit. Amen. They close up shop in August but go take a look at what our new "money, money, money" mentality is costing us.

Her website is Design*Sponge and it will be missed. Here is an article that integrates nicely with where the article is headed, The Cost of Being Disabled written by Imani Barbarin a contribution from blogger  Crutches & Spice--discussions from the intersection of liability, race, gender, and media..

We all know why the temptation exists. The money can be eye popping. I was able to avoid turning to stone by leaving pharma and starting my own data and writing consultancy. I do okay financially but not the same depth of okay as when I wrote what I was asked. period. 

I couldn't return to an era where I didn't know the harms being perpetuated in lock-step with the good. The data large and small companies did not want to include. The cursory distortion of data insights toward marketing and away from actual science or unbiased discovery was hard to miss.

I read the article by Christopher Booth, MD, a medical oncologist and recognized the duplicity. You might be sacrificing your reputation at the moment you decide to change your industry ties from "none" to "some".

...Since that time he has had no relationships with industry. Moreover, he now “sees” industry influence in almost all facets of patient care, medical education, clinical research, and even certification exams (in which the correct answers are based on pharmaceutical funded guidelines).--From the $80 hamburger to managing conflicts of interest with the pharmaceutical industry

Not sure why there are few teeth in the discussion of clinical trial data and how to teach all of us scalable literacy to inform or observe what should or shouldn't be happening at the point of care. What are some of the distortions we find when we become aware of industry influence in clinical trials?

In summary, we have found that modern RCTs in breast cancer, NSCLC, and CRC are substantially larger and more international in scope than those of earlier decades. Although methodology and quality of reporting seems to be improving over time, serious deficiencies persist, particularly in the identification of the primary end point and by not including all randomly assigned patients in ITT analyses. There has been a substantial shift toward industry sponsorship of oncology RCTs. Over the past 30 years, authors’ endorsement of novel therapies has increased while relative effect size has remained stable.

​A significant P value for the primary end point and industry sponsorship are independently associated with strong endorsement of the experimental therapy. Investigators and medical journals should continue to strive toward publication of high-quality studies and recognize the importance of adequate and unbiased reporting of study methodology and results. Finally, clinicians, investigators, and policy makers should maintain and refine perspective on what constitutes a meaningful benefit to patients beyond the P value associated with the result. Further research is needed to determine whether newly adopted therapies are truly worthwhile to patients.-- Evolution of the Randomized Controlled Trial in Oncology Over Three Decades

Before I teach data literacy workshops on how to read clinical literature--I begin with the history. You need to understand how effect sizes and p-values can be influenced by the sheer increase in sample sizes, over powered studies can make spurious associations seem larger, and the rise of the surrogate endpoint. Dig a little deeper and you can appreciate the evolution from little or no industry sponsorship of clinical trials (1990s) to upwards of 90% now funded by industry.

I haven't been able to see exactly what is being taught by panel discussions on writing about clinical trials or societies asking members for money to access articles--but what I have been able to see is not worth your time or effort.

​Have questions? Reach out over on twitter @datamongerbonny. The blog will always be free. Thank you to those of you that have supported this work for so long.