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social, health, political imagery through the lens of G J Huba PhD © 2012-2021

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Hadn’t seen one of those old pull a ticket, get a number, in a while somebody yells out your number after you watch them being on the phone on an obviously personal call for 5 minutes, and then you have 15 seconds to run to the front or the next number is called and you can either argue at high volume or start all over again machines.

ticketmachine

That’s how you get to check in for your appointments, and then wait in line to pay you co-pay on the way out at an outpatient specialty clinic at a prominent medical school (I will not name it but its initials are UNC).

Maybe I should hold onto my stock in companies that produce antiquated, dehumanizing, irritating equipment. There still seems to be a market for such stuff outside of the deli counters (meat markets).

Maybe we need to stop of thinking of patients as meat. And stop administrative staff from acting like pickles.

It’s difficult enough to get patient cooperation in an urology clinic without introducing all of the Freudian and Gothic overlays.

The links page on websites is dead. Why have boring links that nobody understands on a links page when you can provide links with pictures and context (comments) that are automatically integrated with great formatting and pictures?

These external sites work well and contain my curation work. Both have free versions that probably are within your scope of individual information. All you need to do to integrate these with your blog/website is create the custom graphic for your page and set up a link.

Of the two currently predominant web sites for content curation, I prefer Scoop.it (at least this week) although Pinterest does permit more categorization and also has a great working tools.

Click on the images below to open a new window for each of the external sites.

scoopit

pinerest

Remember the “gold standard” research paradigm for determining if a medical treatment works: the DOUBLE BLIND, RANDOM ASSIGNMENT EXPERIMENT?

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.

2013

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.

Click on the image to expand.

Clinical Trial Double-Blind Treatment Evaluation in the Era of the Internet

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.

Click on the images to expand.

How YouTube Can Be Even More Helpful to Those Impacted by Rare and Orphan Diseases

psp_youtube cbd_youtube ftd_youtube

Very useful for forms, templates, novelty, and kidz. Example done with #imindmap on an iPad. Click on image to enlarge.

Computer Assisted Mind Mapping with Handwritten Labels

Steps to hand label the parts of the mind map (in iMindMap)

  1. make a branch without a label
  2. click on the branch to open the drawing app
  3. write/print the word and click done
  4. when back to main mind map window, click drawing, make bigger, rotate as required
  5. tweak the branch by curling it around the handwritten label

Sept 9 2013: Since this was posted, Hans Buskes has also demonstrated the technique of using handwriting in his incomparable way. And he graciously dedicated the map about iOS 7 to me! [Now if only Dr Buskes’ endorsement would let me get on the Apple web site to download iOS 7!]

I have been advocating for visual thinking, visual communication, and visual collaboration through mind mapping on this blog for several years.

I would summarize my experience using mind mapping to move to a more visual and nonlinear and successive approximation thinking style as the #CODER Model.

Here it is. Click on the image to expand it.

CODER Algorithm for Mind Mapping

This mind map was originally prepared in MindManager in the late 2001 for an evaluation of an initiative to increase the capacity of US Nursing Schools to meet the need for graduate-trained gerontological/geriatric nurses. I spent 10 minutes running the original file through iThoughtsX to add some color hues.

This was an evaluation of an important initiative funded by the John A Hartford Foundation (Building Academic Geriatric Nursing Capacity).

Click on the image to expand.

BAGNC

This is a #MindMap (or more properly an #OutlineMap) of a year 2020 Vision Statement/Plan for one of the largest Los Angeles County comprehensive socialcare agencies for women and their children. The Vision Statement/Plan was developed with management over a six-month period.

Click on the map to enlarge it.

Vision for 2020

2006 versions of mind maps from an evaluation of 21 projects funded to demonstrate various models of elder abuse services by the Archstone Foundation.

The program evaluation was managed and explained using a large mind map created in the version of Mind Manager current at that time. We also had many detailed mind maps, used internally, of the hundreds of indicator variables collected and coded.

Consistent with my current thinking, I would now categorize these maps as outline maps, not mind maps. These are really outlines that have undergone cosmetic surgery, not true actively-developed mind maps.

Click on images to expand.

A MM9

A MM8

A MM7

A MM6

A MM5

A MM4

A MM3

A MM2

A MM 1

Coding for Archstone Elder Abuse & Neglect Initiative

As a simple exercise, the set up for the mind map above was imported to the iThoughtsX computer program released in mid September 2013.  Simple color coding in iThoughtsX makes the map above much more useful.

Coding System for Archstone Foundation Progress Reports. Elder Abuse & Neglect Initiative (2)

Kidspiration Maps for iPad came out about a  month ago. This is an adaptation of the Kidspiration and Inspiration 9 software available on PC/Mac and the iPad Inspiration app (for tweens to adults). Inspiration is a (concept but also mind) mapping program widely used in schools, and as my friend Hans Buskes (@hansbusked) has demonstrated, management consulting. So for the K-3 set and $350,000+ set, a new tool is available to combat Powerpoint and crayon fatigue.

I am not sure how I feel about using concept mapping at such a young age. I am inclined to want to see the huge research studies of efficacy school systems and educational psychologists are likely to prepare first. On the other hand, I would rather have my own children using this app than most of the so-called “educational” apps or just zapping Zombies.

I think I can say without reservation that the first time an audience sees a Kidspiration concept map presented with high level scientific results at a professional association convention, everybody will wake up laughing in the middle of their Powerpoint fueled naps.

The developers of Kidspiration Maps believe this is a Pre-K to Grade 5 product. I think it is probably best used in Grades K-3.

Some snaps from Kidspiration mapping from when I was playing around. All mapping was done by a retired 62 year old on an iPad 4. A 6 year old is more artistic and accomplished at using an iPad and probably would get better results.

Click on images to zoom.

kids2

kids7

kids6

kids5

Kids with iPads

Groceries

kids4

kids6

kids1

kids7

There are roughly 1,000,000 fairly inexpensive or free apps on the iPhone/iPad/Mac online stores.

Ever try to find the best task manager or calendar enhancer or text editor or mind mapping or … app?

It’s great to have choice. It’s not so great to get buried in it.

IMHO, most of the “10 best” guides are not all that helpful. And, since all of those 1,000,000+ apps are being updated all of the time to emulate (“steal”) each other’s best points, a relative ranking within app category is fairly meaningless if the review is more than 6 weeks (days/hours/seconds) old.

apple

When I was in grad school, the choices were about the same as those currently in PenUltimate (size of paper, paper color, pen or pencil or marker, color coding, erasable or not).

Ugh. This is much worse than going into a Big Box office supplies store and trying to pick the perfect writing implement that makes it easy to write, makes you learn more and appear smarter, and does not smudge all over your hands and onto your clothing. (It also helps to find a writing implement that does not “bleed” when you leave it your pocket and then wash your clothes!).

Does anyone know which text processor, task manager, calendar enhancer, etc., app survives best when it goes through the washing machine?

Many different types of neurological disease cause somewhat varying forms of dementia. Dementia is not exclusive to Alzheimer’s disease. The constellations of symptoms and their severity in the dementias associated with different conditions are not identical.

Types of Dementia

Click the figure twice to expand fully. This figure is a slight reformatting (adding color coding and brain images) of one appearing in earlier posts.

Here are two more variations of the same map. [Content identical. Formatting slightly changed.]

Types of Dementia 9 29 14 types of dementia

R

Or,

  • I sometimes use the words your kids hear hourly (partially, but only partially, concealed under the scratch sounds) on your local Pop/HipHop radio stations.
  • I sometimes discuss topics often portrayed but not named on Prime Time broadcast television.
  • I sometimes use the slang words for fornication and excrement (as applied to government, especially in the USA) that your children probably learned at home or in first grade. They probably learned to use these words to describe government from you.
  • I often use rare words and phrases like LEARN, TAKE RESPONSIBILITY, READ, and NEWSPAPER. Your child might ask you what these words mean.
  • I make it clear that even if you don’t like it, you need to EAT VEGETABLES, GO TO COLLEGE AND GRAD SCHOOL, VOTE, RESPECT DIVERSITY, EXERCISE, and stop worrying about Kardashians, Bieber, and Miley. I frequently endorse Lady GaGa, Miles Davis, John Lennon, and the Swedish Millenium (Dragon Tatoo) Film series as well as Yo-Yo Ma and Chris Thile. And although I think Obamacare is flawed (in that it does not go far enough), I continue to strongly endorse it.
  • There may be discussion and pictures of the human breast, vagina, and penis was well as brain scans, tooth decay, politicians, the effects of smoking, the destruction of the environment, and income disparities and poverty. I avoid the use of words like boob (for politicians and the breast), prick (for politicians and the penis), and asshole (for politicians and the anus), although your children may be more familiar with the slang than the proper anatomical terms or politicians’ names and responsibilities.
  • I support all religions that respect diversity and humanity and do no try to harm or forcibly convert those who practice other faiths.
  • Research has “proven” that gender, sexual orientation, race-ethnicity, skin color, place of origin, and organized religious group are NOT correlated with human kindness, human intelligence, human ethics, human fairness, human acceptance of other viewpoints, the search for peace, and the willingness to experience new cultures, knowledge, and friendships. The only people I rant about are those in the US government because observation make it clear that many (but I hasten to add not all) US politicians do not aspire to the ideals of kindness, intelligence, ethics, fairness, diversity, and peace. I also scream about lack of healthcare, mental health services, food, safety, peace, education, and respect for all groups in all countries. And I believe that all abusers of children, elders, minorities, and women should be housed in a special corner of Hell next to those who build or use weapons of mass destruction against anyone and those leaders who have attempted “ethnic cleansing.”

Please plan accordingly.

I like to tell random stories under the assumption that at the end the lessons can all be tied together (after all I am telling all of the stories).

Here is a summary in visual form which is mainly how I think these days ..

Thoughts A Few Watts at a Time

reformatted June 2014 in iMindMap 7.1

THOUGHTS A FEW WATTS AT A TIME

Annually I used to give a presentation to graduate students in clinical psychology (the “I hate data, I hate statistics” crowd) at a famous psychology professional school about how to research and write a doctoral dissertation. The number one question everyone had was (nnoooo, not how to do good research or how to pick an important topic) how long it takes to write a doctoral dissertation. All of the dissertation advisors in the room with their students would wince and make rude sounds. I would respond “I know the exact answer and it is 1200 hours (30 hours a week for 40 weeks).” And the students would all have relieved smiles. Then I would say, “but you cannot count the hours you spend kvetching, bitching, whining, going out for coffee with your friends, or on the phone talking about your dissertation blues.” (This was in the days before Twitter and Facebook or I would have included those too.) I think this applies to all writing and other creative work; the “kvetch factor” determines how successful you are. Control kvetching and it is pretty easy.

People in most work situations often waste a lot of time going out for coffee and kvetching. In the company I owned, I purchased an $1800 “grind and freshly brew every cup of coffee machine,” unlimited bags of gourmet coffee, expensive tea bags, a small refrigerator stocked with every kind of soda available, a designer water cooler,  a microwave oven, unlimited popcorn to nuke, and fresh fruit on occasion when somebody complained that all theew was to eat was popcorn. All were available at no cost to the employees. The designer coffee machine paid for itself in a few weeks. Happier folks, more conversations among employees (good, they eventually lead to collaboration and creativity), more team building, more cross-fertilization of ideas and skills. Of course, you could still go out to Starbucks if you wanted to. Almost nobody did since we had all the Starbuck’s coffee you could drink in the office for free (the machine also made expresso, lattes, and all of the other trendy coffee drinks). Visiting clients liked the break room a lot too.

When employees, collaborators, clients, and others would call, email, or show up unannounced at my office door in a state of high agitation, anxiety, or general “lost in spaceness,” I found that reminding them that we were just social scientists and were not “building a nuclear weapon” almost immediately relieved tension and worry. Sadly, some folks are building and using weapons of mass destruction this week.

In the past 30 years, folks have always talked about innovation and creativity as coming from software and hardware. I always found that real advances  come from people-ware (which initially surprised a hi-tech guy like me). Social media is good, telephone calls are better, face-to-face meetings of stakeholders are best. And lots of time needs to be provided for a nonlinear process to occur, re-occur, and grow. Instead of teaching students and new employees how to better avoid people with technology reducing interactions and directives by email never checked to make sure it WAS actually received, we should be teaching them how to work effectively with other creative people by actually sitting down together and hammering out differences and developing new strategies for cooperation. It’s so retro 1960s that it could be the next trend.

Most people work hard to develop products that are so new and fancy that they are “bleeding edge” or so advanced they scary ordinary people. In our company, I never sought to be at the bleeding edge. Rather, any time new bleeding edge methods were developed, I would immediately try to develop the “12 months after the bleeding edge” products that people could use now and understand because of my explicit assumption that there is not an awful lot of use for methods that nobody can use! There is a lot of use for methods that somebody with a reputable track record had simplified (but NOT dumbed-down) and explained. Being at the bleeding edge often means your fingers get cut; simplification and training make the use of the tool a way to discover and communicate.

Office toys are a great thing. Over the years in my company we had a huge blow up clown you could kick when everything was not going perfectly (expressing verbally what had gone wrong and encouraging those within ear shot to suggest solutions). Games (the weekly contest on how many blue m&ms were in the packages being taken from the company chocolate stash; yes we had free chocolate some days, too) helped build communication. There was a talking and rockin’ parrot toy in my office often turned on during meetings.

We weren’t developing thermonuclear devices by email; we were counting and enjoying blue m&ms.

Trout is a program I tried to “get” for two years. Billed sometimes as a mind mapping program, its own developer says it is not really a mind mapping program. Produces odd diagrams that look like spider maps (at best).

The most recent revision for iPad and Mac just came out with greatly improved usability. I finally “got” it (or have deluded myself into believing I have finally understood the intent and uses of the program).

Trout is a brilliant tool for building maps of content links between a number of snippets of information. Get it, spend an hour with it, and you will know how to manually or AUTOMATICALLY sort a large number of text snippets into a very usable visual form.

HIGHLY RECOMMENDED.

Each of the map links in this example came from automated link building using simple default rules. Colors and shapes are arbitrary in this example. Click on images to expand.

trout1

This second version shows all possible automatic links using the default definition. Not especially useful in this form.

trout2

The third version shows all of the links involving the large central (title) circle.

trout3

The fourth version shows all of the links associated with the top yellow square.

trout4

Fast data summary if you import text snippets from a CSV file and use the automatic link building method (which can also differentiate between types of content and color and shape code automatically using your rules). I find it very useful. But you will have to spend an hour experimenting with this program to “understand” it and see how useful it is.

Unrelated except for my play on the title …

screenshot7

 

Trout Fishing in America

Scapple on the Mac (and recently also the PC) is one of my favorite programs. Unfortunately, Scapple is not available on the iPad. There are several good alternatives, and MagicalPad uses the special features of the iPad to make enhanced diagrams for visual learning and project organization.

3 iPad Alternatives to Scapple (MacPC)

6

March 5 2014: A fourth good alternative to Scapple on the iPad is Trout. Trout is not only a Scapple work-alike, but it also has versions that run on the Mac, iPhone, and iPad. See this post for a demonstration and review of Trout. Trout is probably the best of the four methods but it has a relatively steep learning curve.