Health, Health policy, Role of information

Why are medical care guidelines kept behind journal paywalls?

Think you and your doctor can access the latest expert knowledge about your medical condition?  Think again.

Imagine you have cancer and receive chemotherapy. You develop a complication–a life-threatening blood clot, the second leading cause of death in cancer patients after the cancer itself. You’re frightened. What should your doctor do to save your life? Are there drugs available? If so, which one is best? At what dose? For how long? Will it interfere with your chemotherapy? How will you prevent a future clot? Where will you and your doctor look to find the answers to guide your treatment decisions?

You are in luck. You and your doctor don’t have to begin from scratch. In fact, an international team of experts in your very condition have reviewed all the research literature. Research which was likely tax-payer funded. Research which recruited patients like you to be volunteers in the clinical trials. At great time, effort and expense, this expert group met and debated about what is best to do in your very situation.

And extra lucky for you, this expert group after they reached a consensus wrote up their recommendations in a concise document and published it online in a major medical journal just so patients like you could one day benefit from their work—exactly what you and your doctor need to inform the next steps of your treatment

Sadly, this is where your luck runs out. Despite this wonderful life-saving document being published by a major, reputable medical journal, neither you nor your doctor has permission to read it. It is behind a website paywall and you lack access.

Welcome to the world of medical journal publishing, where a handful of corporations control public access to scientific research and evidence-based health care protocols.

Limited physician access

Institutional subscriptions are the most common way medical journals disseminate information and costs vary by customer. As example, the Annals of Internal Medicine quotes an annual access rate for a community library of $1,273 while the fee for a large hospital network is $6,207. This is merely for one journal subscription; there are hundreds of medical journals one must subscribe to for a comprehensive collection.  As journal subscriptions rise, libraries and individuals have been forced to cut back on the depth and breadth of journals purchased.

To download individual articles, fees ranging from $30–$50 for a single article are commonly charged.

It may come as a shock to those behind ivy walls, but there are still physicians in America who own their own practice, hire their own staff, pay their own bills, and must tap their own resources to keep up with the latest medical research. Nearly half of all US physicians are self-employed.

While some physicians enjoy subscriptions provided by their academic institutions many more do not. It may come as a shock to those behind ivy walls, but there are still physicians in America who own their own practice, hire their own staff, pay their own bills, and must tap their own resources to keep up with the latest medical research. Nearly half of all physicians are self-employed and not part of a hospital or academic teaching institution, according to the American Medical Association.

These physicians do not have the benefit of enjoying the deeper pockets of a large academic institution where journals are a comparatively smaller budget line-item.

No patient access

Price for 24 hours of online access

Patients engagement is the current buzz word in health care. We patients like to be informed and proactive in our care. We call upon Dr. Google without hesitation. Medical journals are the most reliable, scientifically-sound, evidence-based source of medical information available on the internet. Yet patients cannot access them.

Publishers say they support patient access, but fail to provide a clear pathway for it.

When queried, editors of major medical journals indicated to me they will send any article to a patient upon request. Yet, they fail to mention this at all on their website nor provide instruction as to whom or how a patient can request an article. The only option offered to patients is the ‘Pay-per-view’ option, which allows only 24 hours of access to view 1 article. See the fee chart above for a sampling of fees requested of patients.

For optimal health outcomes, it takes and informed patient partnering with an informed health care provider.  yet, patients are unable to access evidence-based medical information and scientific research results online.  Without access to quality publications, patients cannot contribute to informed decision making.

Record publisher profits

Medical journals are a for-profit publishing business. Yet, the product they provide often falls within the realm of public good. Can they afford to give more of their product away? Let’s go back to my initial example of the cancer patient and physician needing information about treating a blood clot complication. Where would one go to learn the answer?  And, could the publisher of that answer afford to provide free access to the information?

Lancet Oncology, published by Elsevier, recently published online a guideline titled 2019 international clinical practice guidelines for the treatment and prophylaxis of venous thromboembolism in patients with cancer.  This guideline was written by an independent academic working group aimed at establishing a global consensus for the treatment and prevention of blood clots in patients with cancer. These blood clots, known as venous thromboembolism (VTE) are the second leading cause of death in patients with cancer, after the cancer itself. Ninety-nine clinicians are named among this guideline’s authors and it 16-pages cover every imaginable cancer and clotting situation; so it’s a comprehensive and highly reputable—a gold standard guideline.  This guideline will answer our example patient and physician questions.

Yet, this guideline sits behind a paywall. A patient or physician trying to read the guideline will be prompted to either subscribe to the journal–at $195.00 for online-only–or pay $31.50 for 24 hours of online access of this one article.

Why? It clearly is not because the publisher Elsevier needs the additional cash flow. Last year, Elsevier charged its customers enough to yield a 37.1% profit–a margin higher than that of Apple, Google or Amazon. (Apple= 21.5%, Google= 21%, Amazon= 4.8%)

Medical journal publisher’s profit margin = higher than that of Apple, Google or Amazon

What does the journal say about access?

Since I could not read the guideline and knowing that fifty-five percent of cancer patients receive their care from a community oncology practice not affiliated with an academic institution which would provide journal access, I was compelled to ask the journal to make this and other guidelines publicly available. I emailed the Editor-in-chief and Publishing-Director of The Lancet Oncology, Dr. David Collingridge, asking him to drop the paywall for the above referenced guideline, as well as all guidelines. He declined to do so.

Elsevier is not alone with its profitable business model.  All five of the largest medical journal publishers have posted continued growth with high profit margins–Elsevier, Springer Nature, SAGE, Taylor & Francis and Wiley-Blackwell.

Further troubling is that many medical journals–such as Circulation and JAMA–are affiliated with nonprofit organizations whose very missions are to improve health care.  Yet, if a patient or physician wants to read an article, a pops up box appears requesting payment. 

Informed decision making…it’s a good thing.

Clinical care guidelines offer concise instructions on various clinical situations with a goal of improving the quality of care and improving patient outcomes. Why on earth would anyone not want all physicians and patients to have equal access to that? Yet that is exactly what is happening and for no discernible reason other than profit-motive.

It calls into question larger issues of: Who owns the results of medical research? What are the rights of patients and physicians to access the results of medical research? Is there an obligation to make public medical research which is funded by public taxpayers? These are the issues our society has yet to full address.

Expert knowledge should not be kept hidden but widely disseminated–to both clinicians and patients. Clinical care guidelines are but one type of journal content and unique enough in nature that they should be considered a public good. Given the high profit margins of parent companies, it would seem medical journals could quite easily choose to place clinical care guidelines outside their paywalls as a public service. Publishers have a window of opportunity to do the right thing on their own before public pressure will invite government intervention.

I call upon each of the major medical journals–Elsevier, Springer Nature, SAGE, Taylor & Francis and Wiley-Blackwell–to make clinical care guidelines open access in their medical journals.  It’s a small step which can have great impact. The public deserves easy access to life-saving clinical care guidance.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s