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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
June 2016

lab mouse small

The most cost-effective improvement that can be made to the global dementia healthcare system is to improve free online education modules for dementia caregivers.

Online caregiver and patient education is effectively free. Educational modules developed in countries leading the world in dementia care such as the UK, may be placed online and available to the rest of the English-speaking world within a day and available in translations and culturally-appropriate versions shortly after. No printing costs, no freight bills, and instant updates regularly.

Virtually all dementia caregiving is done without compensation by highly motivated family members who themselves have jobs, families, and other issues to attend to. Better caregiver education can hopefully make family caregiving more efficient and effective at least partially easing some of the huge burden of being a caretaker. Many people with dementia can, at least in the early stages of the disease, also be more independent with the support of appropriate training. Care can improve by supporting family caregivers and persons with dementia expanding their own self-care.

Unfortunately, existing materials on the Internet @#$%. These need to be overhauled now and updated frequently. Training dementia caregivers in basic principles and skills must be made more problem-solution based with caregivers trained to recognize specific problems and provide appropriate and effective interventions (including immediately moving the person with dementia into emergency medical care when needed). I find it interesting that there are thousands of books and websites on how to recognize and intervene in thousands of specific conditions with infants and young children but virtually no usable information online on to intervene when specific problems occur in people with dementia. A small amount of money (in the tens of millions of dollars or euros, not billions) could immediately upgrade the skills of literally millions of caregivers.

A word of caution. If a funding agency wants to get useful very specific and concrete educational materials for caregivers developed, do not make grants to a bunch of academic medical centers and academic research faculty. One reason the online educational models for dementia caregiving are so poor is that they are developed by academic medical faculty and the materials are usually not concretely clinical enough. Either get the materials developed in community medical and social care clinics, or make the grants to Schools of Nursing and Social Work where practical clinical tools for the community are valued and developed.

Click on the Mind Model to expand it.

Online Education for Caregivers of Persons with Dementia (PWDs) Needs to Be Revised

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