I am an American taxpayer which means that I help support a very large percentage of all funded medical research in the world as well as important global healthcare agencies like WHO. I see such research as a global priority and gladly see the US stop building weapons and acting like the police force for the world and redirect our defense budget to even more research and human services.
I have a neurodegenerative disease. I am a trained scientist. I am 100% disabled and do not work. I participate in the global healthcare research and healthcare training network through this blog and Twitter. I am not compensated for my work on the blog and in other forms of social media. My work is influential.
I often consult, retweet, summarize, and evaluate published peer-reviewed articles on topics with relevance to neurodegenerative disease. After finding what appear to be very important articles and reading the free abstracts, if I want to then go on and read the full 10-20 pages about how the study was really conducted and which research it builds upon, I often (>50% of the time) get a message stating that I will have to pay between $10 and $100 to read a copy of that paper.
Note the following. I have neurodegenerative disease. I have 35 years of professional experience and some of the finest training available in psychology and healthcare. Until retirement I held a license in psychology where I specialized in healthcare for more than two decades. I can still read highly technical articles and translate them into language and observations someone without professional training can understand. More than 1000 mind maps and other diagrams in my blog posts demonstrate my ability to do so.
But I cannot afford to pay between $10 and $100 to look at a published paper. Can you? In most cases, my tax dollars and yours paid for the research being described but I am denied access to examine the product created using my tax dollars and yours.
You ask, how can academics afford to pay for reading published articles? The simple answer is that they don’t pay for their access, taxpayers do, either through taxes supporting research grants and university libraries that can be accessed free by academic researchers or by donations to nonprofit agencies that support medical research and libraries.
You have the disease. You want to read the research being done on your disease to find out if there are things being discovered that can help you now.
Dementia patients should have access to dementia research articles without cost. After all, they are the individuals who are studied.
Cancer patients should have access to cancer research articles without cost. After all, they are the individuals who are studied.
I could go on all day, but you get it.
As an American citizen, I own my medical records for services provided in the United States. Why don’t I own the right to read reports that are published from my medical records or my participation in research without being charged a fee?
There are many research journals that use a new model called open access meaning that their articles can be read by anyone for free and that the authors (more accurately their research grants or institutional funds) pay for the cost of independent peer review and posting the article on the Internet. But, the oldest and most prestigious medical and healthcare journals are for-profit operations whether owned by a private publisher or by a professional association such as the American Medical Association, the American Psychiatric Association, and the American Psychological Association. So in most cases, I cannot access the highest quality research on my medical conditions for free. Authors (and peer reviewers) receive no royalties for publishing journal articles.
If patients refused to participate in 10 research studies or even just delayed them for a few months, it is pretty clear that public opinion and elected officials would quickly demand that articles written from the data collected from individuals with a disease be made available to everyone without cost.
Patient-centered participatory care requires that patients have full access to all of the information available about their conditions if they wish to consult it. Charging between $10 and $100 for a single research article prevents most patients from being able to access those very articles that could not have been written with the participation of patient with their conditions in studies that boost professional academic careers and provide profits for publishers.
The situation would abruptly change if patients needed for research studies were to say, “no free access to public research about my medical condition; no participation in further studies of my condition.”
“free access to medical information for all
over medical publisher profits”
Every condition, every publication, 24/7.
George J Huba, PhD
Retired Psychologist and Active Healthcare/Dementia Blogger
Chapel Hill, NC