5.Effective Research Resources

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) 

• Wiktionary: "Educated guess: A well-informed guess or estimate based on experience or theoretical knowledge." (5.3) 

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. 

• (A) Does the person have some sort of special knowledge of the condition or professional experience and credentials relevant to the condition? 
• (B) Is the educated guess/hypothesis within an area they specialize in and/or do they have some financial incentive that are motivating their work and possibly biasing their recommendations? or personal reasons or political motives? 
• (C, D, E) The amount of research that is funded and the quality of the research may be affected by corporate or political reasons and funding may also be affected by what type of population is most at risk from the condition. The open availability of data may be affected by corporate privacy concerns.

• An ORCID research ID, orcid.org, can help identify an author and their work across a number of publishing formats, and provides an easy way to look up the biography of the authors of a published article or book. Read more: What is ORCID? (5.5)
• Publishers can play a role in making the ORCID identification system more effective for readers and scientists by asking for and publishing the ID numbers along with articles. Read more: ORCID and Publishing. (5.6)  

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. 

• PubMed.com (ncbi.nlm.nih.gov/pubmed/) is an open access service for looking up science articles, many of which provide the Abstract summary for free and links to the full text article which may be behind a paywall or be available open source.  
• A reader can look up research by key words or phrases or by research article title or by scientist. The complete history of peer reviewed research published by the scientist may be available on the site as PubMed.com includes over 30,000 science journals. (5.9)

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.

• Hundredth Monkey Theory: Animal research suggested that ideas within a group could slowly spread until a large enough number knew and then suddenly the information seemed to spread throughout the whole group very quickly and even to cross between islands -?- which sounds like telepathy or something so the idea isn't 100% accepted/set in stone, but is more of a possibility to consider. (5.26)

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. 

• Read more: Comparison of PubMed, Scopus, Web of Science, and Google Scholar: strengths and weaknesses. (5.27)
• Statistics showing the increase in information that is being stored virtually as we moved from the Information Age to the Digital Age or Digital Information Age between 1986 and 2007 are available in a graph: (5.28)

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.   

• The website Opensource.com provides a description of open science and how the history of scientific peer review in scientific journals was part of the inspiration for the cooperative world of shareware and open software development. (5.10)
• Opensource.com provides an overview of some advantages of developing software as an opensource project: (5.11)
• Opensource principles are described in a brief How-to-get-started guide for software developers: (5.12)

• A description of how open science research publishing might work and a discussion of the current scientific research system and what is available for authors interested in open science is available at openscholar.org.uk. Read More: Academic self-publishing: A not-so-distant-future. (5.13)
• A more in depth discussion of how the accuracy and truthfulness of medical research could be improved is available in the article: How to Make More Published Research True. (5.14) 
• A discussion of the new approach to designing safer chemicals called Green Chemistry is described in the article: Green Chemistry and the Future of Sustainability, (5.32). 

For a brief description of the following online education sites see "10 MOOC WebSites to Start Your Free Online Education," studentcompetitions.com (9 are listed here, one didn't have a current link, and FutureLearn is an addition, description follows). 

• EdX.org -         EdX.org 
• Saylor.org -      Saylor.org 
• Coursera.org - Coursera.org 
• FutureLearn.com - FutureLearn.com 
• KhanAcademy.org -  KhanAcademy.org 
• AcademicEarth.org - AcademicEarth.org 
• Open Yale Courses - oyc.yale.edu 
• Open Enrollment Harvard courses - extension.harvard.edu, fee may be required.
• UoPeople.edu - UoPeople.edu - University of the People, has a tuition free model, with undergraduate and graduate degree programs. Scholarships may be available to help cover the minimal costs that are required.
• Udemy.com -    Udemy.com  

FutureLearn is an online accredited university training site similar to Coursera and EdX, however they also provide customized courses for businesses for employee training and have a B2B focus in addition to reaching students individually.  (FutureLearn.com) 

• Free courses or an annual service can access a wide range of fields and certificates are available with the fee service and a few of the free courses.  
• Micro-certification and degree programs are also available for a fee for improving business skills or advanced professional certification. Marketing, management and leadership courses can help upper management with their own business directing needs. 

The FutureLearn MOOC platform is streamlined and easy to use. The courses all have a similar format to the videos, text, and quizzes, making it easy to know what to expect when signing up for another course. Other MOOC platforms have a wider variance in course style and difficulty, varying with the individual professors' or universities' style. FutureLearn gets high ratings on review sites and has a refund policy within a defined time limit. An Android and iOS app is in their future goals! (WhatToBecome.com/reviews/FutureLearn)  

Lesson plans can be created on a site by the TEDTalk video group, ed.ted.com - ed.ted.com, a lesson plan building site for students or educators. the site includes examples based on TedTalks and incorporate animated graphic videos. 

Tools are included for creating your own lessons and quizzes, using videos that are already available. The guidance and shared material makes it easy for beginners or students to create a lesson that they can share with classmates too!

Civil Rights and government in the US is the focus of icivics.org - icivics.org.  The site has lesson plans and free resources about government, civic activities and developing a civic attitude. Resources for educators to support classroom and online learning activities, and online activities.

Founded by Former Supreme Court Justice Sandra Day O'Connor; donations accepted to help support free quality civics education being available for all students.

SurveyMonkey.com - SurveyMonkey.com - is a site that makes it easy to produce surveys and analyze the results. Reduced services are available for free. Surveys with more questions, or more complex types of question format may require the subscription service. Survey results are averaged and anonymous making it helpful for customer or student follow-up for an overview, but not for individual tracking.