Have dementia? So do I. You and I and others can use Twitter responsibly to provide information and observations and comments to millions of others, any one of whom might use that information to make a difference in treatment systems, the development of pharmaceuticals, priorities for the use of tax dollars, or the care of a family member.
Pssstttt… these techniques are for anyone advocating for just about any social issue. Pick a good topic you know something about and become a One Person Advocacy Organization.
I would not write about this topic were I not convinced that a number of government agencies, hackers, and 12 year olds have already thought of this.
Today I was looking at the Mac App Store and saw a new featured program that automatically translates from one language to another. The program reportedly translates 80 languages into 80 languages. Since I do not know 80 (or even 2) languages I have no way of verifying this claim. Nor do I think that there is any problem with this app or others of the type. But the App Store stimulated me to think about something.
What if …
What if I an American security agency (NSA, CIA) wanted to slant American public opinion against the Arab World. It could (probably and extremely rapidly) change the translation dictionaries in a computer program to translate Arabic to English in a tone that subtly makes Arabic statements in public social media seem more aggressive and uncooperative than intended. Or conversely if I were an extremist organization that wished to slant opinion against the United States I might alter a translation dictionary to make English statements sound more negative or aggressive or dictatorial in Arabic. This can be done in any pair of languages in either direction.
I have looked for effective computerized translations to English (or more properly Americanish) for decades, primarily because I have no language skills (or abilities) but want to know what the writers in Arabic, Russian, Spanish, Hebrew, French, Italian, Chinese, Japanese, Korean, and other languages are saying on social media. I try to follow many tweeters in the Arab World because I think that Americans are fairly oblivious to the intellectual and medical advances made there as they also are to the peaceful political and religious views of virtually every practitioner of Islam or resident of an Arab country.
In the era of Twitter and numerous other social media services which are starting to provide automatic translations between languages, who tests to make sure that the auto translations do not intentionally or unintentionally slant public or scientific opinion. Obviously, those most dependent upon those translations are least able to judge this!
Anytime I read something that seems odd from a speaker of another language, I wonder if this is the result of an auto translation program unintentionally or intentionally trying to sway my opinion.
This is perhaps a compelling argument for visual thinking using minimal words.
[On the other hand, there is this Photoshop thing …]
Governments and other public entities are increasing their use of web sites as the primary publication outlet for medical, human services, and research information.
The transition to electronic publication saves money as well as other resources and at the same time is much more environmentally-friendly. At least a few forests in the world owe their lives to the decision of some of the largest paper users in the world to move to electronic publishing.
Electronic publishing offers a special advantage not generally available in traditional publishing on paper. On the Internet it costs no more to include colors, simple and complex images, and images that expand to show greater detail. And it is much less expensive for publications to present, in addition to their traditional text, graphics maximized facilitate creative thinking, memory retention, “big picture thinking,” and explanations that may be easier for individuals using other languages and from other cultures to understand.
Not everyone in the world does their primary thinking using words. Many — including me — find visual information more valuable, easier to assimilate, and more supportive of creative insights.
How often do you see a #MindMap, #ConceptMap, #FlowDiagram, or other visual representation on a government web site? While there are plenty of pie diagrams and line charts, such representations of data are quite limited and do NOT incorporate informed interpretation of information. Also, while there are plenty of pictures on government web sites, these images do NOT incorporate informed interpretation of information and they may give a quite biased view of data.
I do not recall ever seeing a #MindMap, #ConceptMap, or #FlowDiagram on the (otherwise extremely useful and high quality) web sites of the US Social Security Agency, the abstracts in the PubMed medical and scientific information databases, and the US government’s explanations of research and social programs, diseases and social conditions, and social service eligibility forms.
World-wide thinking is increasingly visual. Official information should be presented using both the traditional text-based methods currently employed AND newer, very effective methods of visual thinking. The brain is not limited to a single form of thinking and in fact research shows clearly that some of us (including me) handle visual data far more effectively and perform some of our best work using visual thinking techniques. Research also suggests that as the brain changes through disease processes such as Alzheimer’s disease and other more rare neurodegenerative conditions, as verbal centers suffer damage, visual centers may assume increasing importance.
While I strongly prefer #MindMaps as the method of presenting visual information, I could accept #ConceptMaps, #FlowDiagrams, and other visual thinking representations as at least a first start.
Of the mind mapping methods, I strongly believe that the Buzan-style organic mind maps including color-coding, size-coding, radiant information structures, and methods designed to optimize memory retention, memory retrieval, creativity, and cross-cultural communication are the most effective. A recent addition to mind mapping has been Huba’s method of mind modeling that adds all of the components shown in the figure below.
I use my Mac, and its software, primarily as an aid to thinking about everything from what to buy at the grocery store to how to develop large healthcare systems (after all, nobody working for Secretary Sebelius is doing any thinking so …).
I do not need a word processor or a spreadsheet or a statistical program. Rather I need a thinking environment, a writing environment, and a visualization environment. And a bunch of utilities to enhance the “big programs” that never come with all of the bells and whistles I need.
This is what I like for the computing needs I have. Remember … the computing needs I have.
If I only could choose four of these programs, in order these would be …
The information in this post derives from very credible web sites. [As a note, much of the information about Alzheimer’s disease and “normal” or typical aging appears to be accurately derived from the public domain information put online by various departments of the US government.]
I believe that the following mind map is better for explaining the information.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
The Alzheimer’s Association has posted this professionally valid information on its web site designed in a way as to be compelling through its high density of high quality warnings.
The “problem” with this brochure is that it is “too dense” for me (and probably anyone else without a professional background in medicine) to be able to understand and remember the information. How about including this graphic as a third page (ideally as the ENTIRE page 2) in the brochure. I would bet that the outcomes from the extra understandability and memory retention for this critical information would prove to far offset any additional printing costs.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
The design has historically been considered the best way to “prove” that new medical interventions work, especially if the experiment is replicated a number of times by different research teams. By the double blind (neither the treating medical team nor the patient know whether the patient is taking a placebo or active medication) design, investigators expect to negate the placebo effects caused by patient or medical staff beliefs that the “blue pill” is working.
A key part of virtually all double-blind research designs is the assumption that all patient expectations and reports are independent. This assumption is made because of the statistical requirements necessary to determine whether a drug has had a “significantly larger effect” as compared to a placebo. Making this assumption has been a “standard research design” feature since long before I was born more than 60 years ago.
Google the name of a new drug in clinical trials. You will find many (hundreds, thousands) of posts on blogs, bulletin boards for people with the conditions being treated with the experimental drug, and social media, especially Twitter and Facebook. Early in most clinical trials participants start to post and question one another about their presumed active treatment or placebo status and whether those who guess they are in the experimental condition think the drug is working or not. Since the treatments are of interest to many people world-wide who are not being treated with effective pharmaceuticals, the interest is much greater than just among those in the study.
Google the name of a new drug being suggested for the treatment of a rare or orphan disease that has had no effective treatments to date and you will find this phenomenon particularly prevalent for both patients and caregivers. Hope springs eternal (which it SHOULD) but it also can effect the research design. Obviously data that are “self reported” from patient or caregiver questionnaires can be affected by Internet “the guy in Wyoming says” or the caregiver of “the woman in Florida.”
OK you say, but medical laboratory tests and clinical observations will not be affected because these indices cannot be changed by patient belief they are in the experimental or placebo conditions. Hhmmm, Sam in Seattle just posted that he thinks that he in the experimental condition and that his “saved my life” treatment works especially well if you walk 90 minutes a day or take a specific diet supplement or have a berry-and-cream diet. Mary in Maine blogs the observation that her treatment is not working so she must be in the placebo condition and becomes very depressed and subsequently makes a lot of changes in her lifestyle, often forgetting to take the other medications she reported using daily before the placebo or experimental assignment was made.
Do we have research designs for the amount of research participant visible (blogs, tweets, bulletin boards) and invisible (email, phone) communication going on during a clinical trial? No. Does this communication make a difference in what the statistical tests of efficacy will report? Probably. And can we ever track the invisible communications going on by email? Note that patients who do not wish to disclose their medical status will be more likely to use “private” email than the public blog and bulletin board methods.
Want an example. Google davunetide. This was supposed to be a miracle drug for the very rare neurodegenerative condition PSP. The company (Allon) that developed the drug received huge tax incentives in the USA to potentially market an effective drug for a neglected condition. The company, of course, was well aware that after getting huge tax incentives to develop the pharmaceutical, if the drug were to prove effective in reducing cognitive problems (as was thought), it would then be used with the much more common (and lucrative from the standpoint of Big Pharma) neurodegenerative disorders (Alzheimer’s, Parkinson’s) and schizophrenia.
Patients scrambled to get into the trial because an experimental medication was better than no medication (as was assumed, although not necessarily true) and the odds were 50/50 of getting the active pills.
Patients and caregivers communicated for more than a year, with the conversations involving patients from around the world. In my opinion, the communications probably increased the placebo effect, although I have no data nor statistical tests of “prove” this and it is pure conjecture on my part.
The trial failed miserably. Interestingly, within a few weeks after announcing the results, the senior investigators who developed and tested the treatment had left the employ of Allon. Immediately after the release of the results, clinical trial participants (the caregivers more than the patients) started trading stories on the Internet.
Time for getting our thinking hats on. I worked on methodological problems like this for 30+ years, and I have no solution, nor do I think this problem is going to be solved by any individual. Teams of #medical, #behavioral, #communication, and #statistical professionals need to be formed if we want to be able to accurately assess the effects of a new medication.
I’ve been writing a lot recently about rare and orphan diseases, especially those that are associated with dementia (which is NOT synonymous with Alzheimer’s disease). Dementia is (obviously) a huge untreatable condition with a huge impact on the healthcare system, both for those with dementia and their caregivers, and those who provide and fund care.
I looked at YouTube today to see how much video information was on the Internet about conditions — Corticobasal Dementia CBD; Frontotemporal Dementia/Degeneration FTD; Progressive Supranuclear Palsy PSP. These are very rare diseases both in the USA and world wide. There are no treatments for any of these conditions although pharmaceuticals are sometimes used off-label to attempt to control symptoms and various behavioral assistance (physical therapy, occupational therapy, speech therapy, case management, support groups, caregiver education and supports) is often offered to improve the quality of life of patients and caregivers.
Most physicians in non-neurological specialties have not studied these conditions nor know much about them.
For the three conditions I examined there were dozens if not hundreds of videos of clinical symposia, caregiver observations, patient interviews and observations, and timelines of the disease progression of individuals and especially a few celebrities.
Especially with rare diseases, where there is not a lot of information in the media for the public to consult, videos on YouTube can make a great contribution to patient-caregiver-professional education and an improvement through education of the quality of life for patients and their caregivers.
What is NOT on YouTube?
I see no assessments of the quality (validity, reliability, applicability) of the videos.
Why not have some professionals look at the videos, and rate them for accuracy. Really. And then create a video.
There is some awesome information currently on YouTube about rare and orphan diseases. There are also huge holes in the aggregate collection of videos in that many important topics are not discussed. And some of the videos are just plain not reflective of current medical standards or state-of-the-art knowledge.
I’d urge professional groups and #YouTube to look at getting a rating system for these videos of all diseases-conditions, and especially the rare and orphan diseases. There are huge benefits of this information but also some errors that need to be fixed so that patients and caregivers in search of a cure where there is none available at this time are not misled.
#YouTube is a huge resource to individuals and their caregivers who must deal with rare and orphan diseases without effective treatments. Hopefully, the videos will be used to educate and support, but incorrect information may unrealistically raise the hopes of patients and caregivers that these diseases can be treated with unapproved medical treatment or ineffective alternative approaches. Or, videos of late stage sufferers from a disease can be extremely scary to patients and caregivers and not permit them to focus on maximizing the quality of the left before the late stages of a disease.
Let’s get some professional video comments from established experts who CAN talk to REAL folks in a way they can understand up on YouTube. Great information should be widely disseminated; incorrect or damaging information should not be allowed to be presented under “freedom of speech” laws without professional comment about probable inaccuracies.
Correct and supportive and understandable videos would go a long way to help patients for whom there are not established and efficacious treatments have the best possible quality of life.
Now that would be a huge contribution. Heck, I’d even give Google a tax deduction (and you will never hear me mention such a suggestion in any other context) for getting accurate and REVIEWED video content on rare and orphan diseases available to all in a number of different languages.
There have been several new “blank canvas” Mac apps released recently. The main three are Scapple (A+), Delineato Pro (A-) and Mindix (still in early development). These programs are not mind mapping ones. They are very simple ways of cutting and pasting snippets, links, pictures, paragraphs and other information onto a large canvas or sheet of paper like those we used to decorate the walls during meetings.
The mind map below shows features of the various blank canvas apps.
Scapple and Delineato are both highly recommended.
ADDITION March 2, 2014: Big Hairy Goal has recently been released for the Mac and is comparable to Mindix but much more highly developed. I consider Big Hairy Goal worth rating A.
Biggerplate.com (@Biggerplate) has started to post video recordings of the presentations at their recent mind mapping conference in London on their web site.
The first four presentations are now available online at this link.
All four presentations are excellent and are by experts willing to talk to their peers frankly and clearly thus resulting in a very large exchange of bottom-line information.
The 20 minute presentation by Chris Griffiths (@GriffithsThinks) is probably the best talk on modern mind mapping I have ever seen; watch this if you want a jump start into modern mind mapping. I agree with about 90% of what Mr Griffiths says, and he is extremely articulate about the big issues.
This appears to have been a great conference. Four more similar conferences are being scheduled around the world, with two coming up in the USA (San Francisco, Chicago).
Liam Hughes and his staff at Biggerplate facilitated an excellent conference and more importantly, started a valuable ongoing communication process.
Highly recommended. If you believe that visual thinking (and mind mapping) can be useful in your field, try to watch some of these short videos. Like them, I do.
I confess. In 1979 Pete Bentler and I published an article entitled “Simple Minitheories of Love” in the highest prestige journal on personality and social psychology.
Blame it on the exploits of the greatest psychometrician of his generation and a 28 year-old wanna-be psychometrician, both active personality researchers, trying to convince the field that the new statistical modeling methods (Structural Equation Models; LISREL) they were testing would revolutionize the field (I was wrong on that one, too).
Now ask yourself why neither of these guys — nor any of the other main figures in the fields of psychometrics, sociometrics, personality, social psychology, attraction research — ever went on to start a web site to match individuals on the basis of personality and life style questionnaires (I won’t dignify them by calling them tests); such sites became quite lucrative. This was in spite of the fact that at least one (Huba) had the opportunity to do so during the years when he was the Vice President of R&D for a major psychological testing company and later when most of the other competing testing companies hired him as consultant. Or why did the major personality test developer of his generation and the owner of a psychological testing company (the late Doug Jackson) never consider developing such a product?
See a pattern here? Even the folks who made the most $$$ from psychological instruments and had the most influence in the psychological assessment journals and industry did not develop a Love Site.
I concede that a Love Site may be a good place to find people you might not never meet otherwise through your social and work friends and these might be good mates or sex partners. Or they might be psychopaths, perpetuators of sexual or domestic violence, dependent individuals, or alcoholics.
So far as I can tell from the undisclosed algorithms of the dating sites and their unpublished outcomes, I have no way of knowing for sure if the sites have a good chance of producing a good outcome and avoiding a terrible (and life-threatening) one. I suspect that if there were strong scientific evidence that the sites “work” in both cases, there would be a lot of scientific research published that supports this notion. Where is the incontrovertible evidence? Can I can read it or hear it at professional conventions? Claims on TV that a lot of people got married mean little or nothing without information about comparison groups or negative outcomes.
I would have no problem concluding that the Love Sites are effective if there were psychometric and other scientific evidence that the algorithms used are valid. Without such evidence, I worry that they are more voodoo and “smoke and mirrors” than places where you can find a mate and your date will not result in a rape. Of course I cannot prove my position is right, but neither can the Love Sites. My stance is safer for individuals.
There is that old fashioned system of “meet and greet and respect the people you meet” that did produce so many humans that we now have a problem with world-wide population growth. Sometimes older methods work better if you are patient.
There are lots of different applications of mind mapping methods to such areas as brainstorming, task management, scheduling, journaling, and sharing basic information (great day to play basketball!). Other mind maps may tell us about scientific experiments and theories, political arguments, historical events, anatomical features of the human body, the quality of hotels in Barcelona, or expert rankings of world football (soccer) teams projected to finish near the top in the World Cup tournament. How do you know a real expert has ranked your favorite football teams correctly? How do you know that the student who created the cute mind map of the human body as a subway map actually put in the correct names parts and names? What are the professional qualifications of the “expert” who says the world is flat? Do experts believe the purported expert who drew the mind map? Is the information in the mind map you found and downloaded from the Internet really going to tell you what you need to know for your organic chemistry test in two hours?
I sure hope my doctors studied from factually correct mind maps, not just pretty ones given away by a pharmaceutical company. And (since I have a doctorate in psychology), I am really sick of seeing mind maps that say they contain psychological principles that will make you happier, thinner, less anxious, more sexy, and help you self-diagnose whether you have bipolar disorder and which drug would be best to help you and should be ordered from an Asian or Mexican pharmacy over the Internet (URL at the bottom of the map).
Mission critical information in mind maps should be carefully reviewed by experts in the content of the maps to minimize the number of cases where misinformation hurta people . If such a review has not been done, or if the author of the mind map does not provide adequate credentials to assess professional competence, I recommend you do not use such information for making personal or business decisions. While I love artistic maps that are well-designed and “clean” in their appearance and spend a lot of time trying to emulate the best, adherence (or not) to the mind mapping rules of Tony Buzan and the use of a wonderfully artistic program, in no way does or does not make the information in the maps correct. Think about that carefully the next time you download a mind map from the Internet and try to study or make a business decision; that’s a fact, Jack.
It’s also a fact that these comments also apply to infographics, concept maps, and other information visualizations.
My next post is going to have a lot to say about the importance of content and how to assess whether that pretty map you just found contains valid, reliable, and important information.
For many years, I was a heavy consumer of cable network news. I had (and still have) a TV in my home office that used to run all day on one or more cable news networks. As I started to participate in social networks and blogs and following the links for news suggested by others, I found social networks a much better delivery system for high quality news, comment, discussion than cable news. “Twitter killed the Cable Network News Star.” My observations about social media and cable network news are shown in the mind map below.
topics and subtopics: Cable News Versus Social Media My Conclusions Social Media (Twitter) consensus better less acrimony more cooperative participatory more interesting Traditional Cable News not participatory not multidisciplinary contentious more dogmatic boring talking points Discussed Here cable news Fox NBC CNN CNBC others content knowledge current facts debates learning process issues debates learning acrimony vs harmony consensus cooperation vs competition social media Twitter Google+ LinkedIn Facebook Social Media multiple views citizens professionals politicians students stakeholders repeats short time amplification repetition greater audience greater involvement emotionality controversy no $s most participants no fame illusory illusory in social media factual preferred fosters democratization stakeholder consensus process minimal polarization learning 360 degree knowledge views emotional reactions biases desired outcomes functional reasonably polite positions stated 140 characters news link blog link see many views short time disciplinary stakeholders potential further process steps resolutions solutions in selected networks Cable News divisive competing politicians talking heads financial incentive abrasiveness disagreement politicians attorneys repeats same video clip arguments arguments new video clip interview controversy = profits ratings business plan future fosters competition acrimony polarization selfishness silo thinking dysfunctional group consensus information source not balanced fair valid