Not all conditions or situations have evidence based recommendations available or may not have research from double blind human clinical trials available. Rare disease may have so few patients with the condition that some types of research studies couldn't be performed. Rare diseases may not have enough funding or profit motive to support the expense of research trials. Research about similar conditions or from case studies with the few known patients with the rare disease can sometimes help guide a research scientist towards a possible treatment to try in an experiment or clinical trial.
An educated guess is speculation about what might help or harm that is based on experience or the research that is known about a condition. When it is formalized into a research article it may be called a medical hypothesis or theory. Ideally a hypothesis is able to be tested for accuracy in an experimental setting. (5.1, 5.2)
Some research ideas are developed by scientists who experienced a disease or condition by living with it on a daily basis in themselves or in a family member. Not everyone has common diseases with evidence-based recommendations available but everyone needs to eat or be fed regular meals anyway.
As a dietitian, I was trained to look for any research I could find regarding a rare disease or condition and see if it included any recommendations or clinical findings regarding diet or which nutrients might be helpful or harmful. Interviewing the patient regarding their usual habits also was helpful for identifying any lifestyle or dietary factors that might be known to be more harmful or helpful of health in general or for the rare condition.
Not necessarily. It would depend on (A) who is guessing; (B) about what topic; and (C) whether they had adequate high quality research available on the topic, and (D) adequate time to review the research articles -- and (E) ideally, also the data and statistical analysis on which the research articles were based.
As a Registered Dietitian my professional work experience was in the area of administration and individual counseling primarily for the prenatal and early childhood stages of life. Use of medical research helped me better serve special need clients whose health conditions were rare enough that standardized recommendations were not available for them - but they still had to eat or be fed by their caregiver. Reviewing any research or case studies that did exist could frequently provide some better guidance then "we don't know much about that disease, sorry, good luck."
Since resigning for health reasons several years ago, I've been reading more on the medical topics that I had helped patients with or which affect my health. My interest in medical research is still at the beginner level of reading other's work but I do have an ORCID number and hope to publish peer reviewed papers eventually.
The information collected on this page are links for readers new to medical research who might not be aware of the search terms and websites, rather than links for the academic who is already published.
News spreads as fast as news sources provide it and word of mouth between individuals can spread news and ideas even farther - and possibly even faster in our modern era of social media. The concept of "The Hundredth Monkey" is based on animal behavior research that included a few isolated islands each with groups of monkeys. It was observed that a particular style of food handling was introduced on one island and slowly spread between a few monkeys until fairly rapidly all of the monkeys on that island were preparing their food the same way - and then inexplicably by modern science, shortly later all the monkeys on the other island were also preparing their food in the same way - did the monkeys have a social media account too? I don't think so. The oddity remains unexplained.
Before the internet existed searching for information took much longer than entering terms in the PubMed.com search engine, click to see an image of a card catalog used to look for book titles:
#BeforeTheInternetExisted My students don't believe me when I talk about a card catalogue. pic.twitter.com/tuaaDaBXBW— Adriana (@adriana700777) March 16, 2017
Research articles took even longer to look up then book titles. The 30,000 Journals listed in PubMed.com would submit titles, authors and keywords to a cataloging system that published sets of books, a series of many, many books, with many tiny titles arranged by the keywords. Once you found a title of interest you then had to walk around the library to find the physical copy of the magazine like set of Journals arranged by date. The exact set of Journals would need to be found and then the right date and then you would need to flip through the magazine like issue to find the page for the article you were somewhat interested in from the tiny print listing in the book you looked at a long time ago, far , far away in another part of the library. Finally, you find the article and if you are lucky it will turn out to be helpful instead of a complete waste of your time - and that was for just one article, you set off for the next article on your list that you found among the tiny titles in the set of books far, far away in another part of the library.
#BeforeTheInternetExisted research articles had to be found by looking through books of topics and then you had to go find the Journal— Jennifer Depew (@deNutrients) March 16, 2017
Sharing ideas is like running a relay race, writing things down turns them into a baton that you can pass to the net runner/reader in the race of expanding human understanding of ourselves and our surroundings. You never know when the Hundredth Monkey will be the next reader to click the search engine link, whether a researcher or an individual with health concerns.
The Digital Information Age doesn't need telepathy in order to share information quickly. PubMed is not the only free or reliable database of scientific journals. Google Scholar is also available for free and the ability to search the text of books themselves is an amazing gift compared to the system involving sets of books with keywords and titles in very tiny print. Scopus by the publishing company Elsevier and World of Science are two fee services with databases of scientific journals.
I really love the Digital Information Age. It's like a typewriter and a card catalog and a library, right at my fingertips instead of far, far away. There is a dark side, to mix my science fiction metaphors. (5.29) The speed of virtual sharing can allow hurtful jokes or negative comments to spread quickly and in academic circles has led to lost jobs or harmed reputations. In pop culture circles jokes can be based on random images which may lead to the real world person’s life becoming linked to false impressions that affect their real job or even their safety. (5.30) I still like the internet. It is in a wild west phase of a new frontier. We are learning new ways to get along with each other as we also learning that older instinctual ways of coping exist within groups and can be powerful forces that can do good but also can cause harm.
In the computer industry shareware and cooperative development of software has been a part of many advances. Best practices from one industry can serve as helpful role models when considering the need for change in another industry, and to help decide what changes to make and how.
There are also best practices in research and in the use of statistical analysis of results. Math can be used to increase apparent significance of results and the results may not be able to be repeated by future studies or when the experimental procedure or treatment is attempted to be used in real world applications either in the business world or in medical practice with the treatment of patients.
*A shorter version of this section is also on the page: About Effective Care.
There are a lot of answers available in the research articles that already exist, but making the time to read them all, interpret and collate them, and test them in real world situations is daunting, - or it's an exciting challenge we all can look forward to accomplishing together, - in an open science system.
A platform for supporting open science is being developed: Enabling Open Science for Health Research: Collaborative Informatics Environment for Learning on Health Outcomes (CIELO): (5.21)