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The University of Washington Institute for Health Metrics and Evaluation (Dr. Christopher Murray, Director) has developed perhaps the most useful model for predicting the impact of the COVID-19 pandemic on the 50 US State, the District of Columbia, and US territories. I consider the IMHE model as the most useful (and valid) model available. I was both trained in such models of healthcare needs and outcomes and used them for 35 years until my retirement. I applaud their work and am very grateful they have made this significant scientific contribution. There is no doubt in my mind that IMHE’s work has saved thousands of lives.

In the past week (last week of April 2020) IMHE has made estimates of when each state can gradually start to reduce social distancing restrictions SLOWLY AND GRADUALLY. Their predictions assume that all states maintain severe social distancing restrictions until the stated start dates. And critically their predictions assume that there are adequate COVID-19 testing and tracking materials and human resources available.

Unfortunately, to this date, while the President and Vice President have asserted that such resources for testing and tracking exit now and in the past few months have existed, their assertions are unfortunately lies and there have not been enough testing materials and trackers at any time during the COVID-19 pandemic.

The IMHE estimates are superior, but their presentations on their server are definitely very difficult for those other than scientists to understand as they require manipulations of a large database.

Since I know what they are talking about but am confused and surprised by their data presentations, I made a chart from their own data and analyses to simplify and present their results a less technical way.

The big questions to US citizens in when they can start safely (for themselves and fellow citizens) gradually. Below is a mind map that is a cumulative set of estimates of when the US states can BEGIN to taper social distancing regulations GRADUALLY.

The IMHE Director has appeared on television in the last two days and said that they hope to have revised estimates by the weekend.  I will revise the graphic when they release updated data.

Here is the overall calendar of when each state may start lifting social distancing restrictions and then monitoring results and determining whether restrictions must be restored.

The master calendar derived from the IMHE analyses, data, and conclusions. If states open before the suggested dates, the estimates will need to be moved later.

Click on the image to expand it.

George J. Huba, PhD
4/29/20

Want to get the attention of Big Pharma and patients who do not try to prevent common diseases? Require this statement or something equivalent on every bottle of medications (prescription and not prescription) sold. [Of course, filling in the blanks with numbers derived from clinical trials, longitudinal studies and other credible scientific information collected by independent qualified professionals.]

This drug works ___% of the time for ___% of the patients who use it, producing a ___% percent improvement for ___ months at a list price of $___ per month. Insurance typically pays for ___% of the cost. ___% of patients experience severe side effects.

This data — or some variation of it — is currently or should be collected by the FDA and confirmed by consultants independent of both the FDA and the pharmaceutical company.

Big Pharma will not like this proposal. Elected officials who have been “bought” by Big Pharma contributions to their election funds will not like this proposal. We should listen to neither group.

Consumers of medicines and treatments should know the approximate cost of their treatment and its efficacy when collaborating with their healthcare providers on a treatment plan.

Everyone should consider the relative costs of preventing diseases rather than treating them. The information provided by these labels could help individuals decide whether a healthy lifestyle provides financial benefits to them.

screen_0089 screen_0088 screen_0087 screen_0086I consider John W. Tukey to be the King of Little Data. Give him a couple of colored pencils, the back of a used envelope, and some data and he could bring insight to what you were looking at by using graphic displays, eliminating “bad” data, weighting the findings, and providing charts that would allow you to explain what you were seeing to those who had never been trained in technical fields.

Tukey’s approach to “bad data” (outliers, miscodings, logical inconsistency) and downweighting data points which probably make little sense is what will save the Big Data Scientists from themselves by eliminating the likelihood that a few stupid datapoints (like those I enter into online survey databases when I want to screw them up to protect privacy) will strongly bias group findings. Medians are preferable to means most of the time; unit weighting is often to be preferred over seeing too much in the data and then using optimal (maximum likelihood, generalized least squares) data-fit weighting to further distort it.

Few remember that Tukey was also the King of Big Data. At the beginning of his career, Tukey developed a technique called the Fast Fourier Transform or FFT that permitted fairly slow computing equipment to extract key information from very complex analog data and then compress the information into a smaller digital form that would retain much of the information but not unnecessary detail. The ability to compress the data and then move it over a fairly primitive data transmission system (copper wires) made long distance telephone communications feasible. And later, the same method made cellular communications possible.

Hhmm. More than 50 years ago, Tukey pioneered the view that the way to use “sloppy” big data was to distill the necessary information from it in an imprecise but robust way rather than pretending the data were better because they were bigger and erroneously supported over-fitting statistical models.

Hopefully it will not take another 50 years for the Big Data folks to recognize that trillions of data points may hide the truth and that the solution is to pass out some red and blue pencils and used envelopes. Tukey knew that 50 years ago.

All it “costs” to adopt Tukey’s methods is a little commonsense.

Hhmm, maybe the Tukey approach is not so feasible. Big Data proponents at the current time seem to lack in aggregate the amount of commonsense necessary to implement Tukey’s methods.

Turn off the computers in third grade, pass out the pencils, and let’s teach the next generation not to worship Big Data and developing statistical models seemingly far more precise than the data.

John W Tukey

Most people carry around a lot of assumptions about what other people should be able to do.

We typically assume that if you can write a blog post you can tie your shoes or feed yourself ice cream.

Or that if you cannot remember names or understand a simple conversation you cannot mind map. Or that if you can mind map you must obviously be able to make a decision about what clothes to pack for a two night trip.

Well … I can do a pretty complicated — and I think fairly creative — mind map in an hour or two that illustrates a pretty good conceptual understanding of scientific, psychological, or emotional material. I takes me two FULL days of high anxiety to pack a suitcase for a short trip and I often arrive with clothing unsuited for the intent of the trip or the weather. I remember a lot of multivariate statistics and probably could still analyze a complicated BIG DATA set, but have had times when I had to do Google searches to spell arithmetic correctly.

Doesn’t make any sense except to a skilled neurologist. And every person with dementia is different and every disease that results in dementia is different. And sometimes you can do things in the mornings that you cannot do later in the day.

Don’t let your perceptions and assumptions stereotype people with dementia. We can — depending upon the specific person — do a lot of things you believe we cannot do because we leave a shirt buttoned and pull it on over the head since buttons are too frustrating. And just because I can make a mind map does not mean I can button my shirt or make it clear to a server what I want for lunch.

Go figure.

I can however remember how to eat ice cream with a spoon. And I am pretty sure I will never lose that knowledge. But I am writing complete instructions for myself just in case I cannot figure it out in the future. Some things are too important to leave to chance.

Click on the image to expand it.

DO NOT ASSUME

Teach them lots of math and data processing expertise without teaching them anything about the data issues in their applications.

Just like now.

No wonder data and data scientists have had little impact of importance in any area except selling books, audio tracks, videos, underwear, pens, pencils, Alexa, Siri, and groceries.

When we train data scientists properly, we might learn something of value in the big datasets of healthcare, wealth distribution, economics, political trends, and ice cream preferences.

Click the image to expand it.

 

A few thoughts about the importance of knowing the theories and prior studies in the content area of the modeling and data collection and data analysis and generation of conclusions.

You can’t model data without knowing what the data mean.

Click on mind map to expand.

Data Scientist

We have had many data science fields in the past 50 years. Among others, the fields include applied statistics, biostatistics, psychometrics, quantitative psychology, econometrics, sociometrics, epidemiology, and many others. The new emphasis on data science ignores content knowledge about the data and their limitations and the permissible conclusions.

We do not need to replace a round wheel with a square one.

See also previous post on Big Data/Data Science adopting the mistakes of Big Pharma.

a HubaMap™ by g j huba phd

Dec 13 2013: I have been experimenting with some formatting. This is the same map content as above, but using iMindMap 7 which was recently released.

Data Scientist sketch

If you have not read the Introduction to this series of posts, it is important that you read it before this post. Click here for the Part 00 Introduction. This post is part of a series of more than a dozen posts.

I worked on understanding health and social service programs, especially for the disabled, poor, disenfranchised, and traditionally underserved as a program evaluator for about 25 years. I was very good at it and worked with hundreds of programs spread over most US states.

In writing about my activities to achieve stability in my dementia and maximize my quality of life, I am going to employ the tools of program evaluation to describe what I was trying to achieve, what I did to achieve my goals, why I did various activities, and which parts of my interventions seemed to help me the most. No, not in this post but in a series of more than a dozen posts.

In this post I will start by describing the activities I designed for myself and did throughout my period of diagnosed dementia over six years of living with the disease. In subsequent posts, especially Posts 02 and 03, I will discuss the outcomes of my activities. After that, I will address some of my activities — and especially those that “worked” extremely well for me — and describe them in depth, show how other individuals might use these methods, and how dementia caregiver and healthcare systems might be built around them.


The image below is a mind map. Should you not be familiar with how a mind map is drawn and read, please search this website for posts on mind mapping using the search box. Or, go to the home page by clicking here and look at the list of pre-defined searches.

A very simple set of rules for reading a mind map is as follows.

  1. Start at the center of the diagram. Each of the topics (ideas or major branches) that come out of the center represents an issue. Important information about the main issues is given as a series of branches. The organization is in an outline or tree where large branches divide into smaller branches and smaller branches divide into even smaller branches.
  2. Think of the map as a clock face and start at the 1 o’clock position (upper right corner). Read outward from the center along the branches and sub-branches to see how ideas and information about the topics can be arranged in a hierarchical or tree structure. [If you could go up a huge fire truck ladder and look straight down, you would see a structure of tree branches that looks like a mind map. When we study or read a mind map, we are looking at a whole tree — set of information — and then seeing how small and more specific information spreads from the trunk.]
  3. Go around the map in a counter-clockwise manner (to 2 o’clock, 3 o’clock, etc.), following the branches down to their branches and their branches and finally to twigs. Remember that we are looking down at a whole idea [or tree] and its branches and their branches in order to understand how the information represented on these branches goes together and what the most important information is.
  4. The mind map is thus a picture of major ideas followed by its major subdivisions or branches and sub-branches. The “big ideas” are attached directly to the central issue.
  5. A mind map is a way of showing in an image how a set of data pieces or ideas go together.
  6. The pictures, color coding, and fonts are used to designate what is the most important information in the mind map. When you are trying to remember or organize or determine priorities, the pictures, color coding, and size of the fonts can help you store information in “visual” parts of the brain and then retrieve it by thinking about pictures, the color coding, or size-importance of the information.

Click on the mind map to expand its size and zoom to various portions of the map.

 

As you can see, I tested app after app after app on my Mac and iPhone to see which could help me. I read all about how to mindmap and draw sketchnotes and I practiced and practiced. I learned to read “dog” and taught my Newfie to understand “people.” I doodled, watched the news, built a highly-rated social media following of more than 140,000 individuals interested in healthcare, dementia, visual thinking, and 100s of other topics from around the world. I went to concerts, watched movies, and cheered for the two local universities with huge sports programs. I engaged some new parts of my brain. I thought in pictures.

  • I HAD FUN.
  • I LEARNED MANY NEW THINGS THAT STRETCHED MY BRAIN INTO NEW CHANNELS.
  • I BUILT COGNITIVE RESERVE.
  • I THINK I PROVIDED NEW INFORMATION TO PERSONS WITH DEMENTIA AND COGNITIVE DECLINE, CAREGIVERS, HEALTHCARE PROFESSIONALS, AND THE GENERAL PUBLIC. I FEEL GOOD ABOUT THIS.
  • I HAD FUN.

Stay tuned, the interesting stuff starts next.

Big Data/Data Science 1

Big Data/Data Science 2

Big Data/Data Science 3

Big Data/Data Science 4

Big Data/Data Science 5

Big Data/Data Science 6

Big Data/Data Science 7

Big Data/Data Science 8

Big Data/Data Science 9

Big Data/Data Science 10

Big Data/Data Science 11

Big Data/Data Science 12

Big Data/Data Science 13

Big Data/Data Science 14

Can Big Data/Data Science avoid the train wreck of Big Pharma? I believe that the Big Data disaster will make the Big Pharma issues seem small in comparison.

But the issues will be about the same. A lot of the Big Pharma execs have become quite skilled at “beating the system” using “undocumented science” and many will move to Big Data and employ all of their very “best” moves and tricks. Big Data/Data Science has the potential to hurt the average individual even more than the greediness of Big Pharma.

Big Pharma

Big Pharma Train Wreck

Big DataBig Data Train Wreck

Help!!!!!

HubaMap™ by g j huba phd

This afternoon I went to the local Panera and paid by credit card. My bank declined my charge of $4.82. I figured it was the magnetic strip on the card which had failed or that the new trainee using the cash register may have made a mistake. She ran the card three more times and it was rejected. Then I got four text messages from the bank saying that they are rejected my charges. To text me, they used my phone number.

I called. They had put a hold on my card because they had some questions about my charges from the prior few days. The red flag event was that I had made an earlier charge of $9.65 at Panera about eight hours before. Their computer program was not smart enough to figure out that it was not unreasonable for someone to have breakfast at 6:30am at a Panera in Durham and then walk into a Panera in Chapel Hill later in the day with 30 minutes to kill and had a coffee (and a Danish I probably should not have had) while I played with my iPad on their free wireless connection. The computer also questioned the $1 charge at a gas station this afternoon (which the human representative immediately recognized as the established practice of gas stations opening charge lines with their automated payment systems of $1 when you swipe your card and then next day putting a $92 charge on the card for filling the tank). I was also asked if the payment made on the account was one I had made (I asked the customer service rep if she thought that if someone had paid a bill for me that I would tell her it was an erroneous transaction and she laughed for a long time) as well as a $71 charge to a software company outside the US.

They had freaked out because they could not reach me by phone at three numbers that were old ones not active (I know they have my current number because they sent me texts at it and same bank sometimes calls about my other accounts at the cell phone I never turn off and which has a voice mailbox). Of course, if they did not have a no reply text address, I could have responded to the four texts they sent.

Predictive models have been around for a decade or more in banks as they attempt to identify fraud and protect themselves. The episodes I have with my bank about every 2-3 months illustrate what happens when somebody blindly runs predictive analytic programs through big datasets without using some commonsense to guide the modeling process. Just because anyone can buy a $100,000 program from IBM or others for developing predictive analytics does not mean that the model that comes out of the Big Data and expensive program makes any sense at all.

Or that the NSA or FBI or CIA or Google or Amazon models make much sense as they probe your private information.

If a computer predictive system is going to think that somebody is committing credit card fraud because they purchase two cups of coffee at the same national restaurant chain in a day, we are in big trouble.

The bottom line is that Big Data models are going to have to be regulated before some idiot accidentally turns on Sky Net.

Or maybe the problem is that the NSA or FBI or CIA or Google has done it already.

 

In 2010 I was diagnosed with neurodegenerative brain disease with the initial diagnosis being supranuclear palsy which was later amended to the highly related frontotemporal dementia, behavioral type. Some believe that PSP and FTD are variants of the same disease.

I started to examine Mac and iPhone/iPad apps that might be useful early in 2010. After I retired in 2011 I started to use a number of the apps for such things as calendars, task lists, alarms, reminders, and other business-like functions. The business-like apps failed to motivate me to use them continuously nor could they address executive functioning problems that were at the core of my disease. As early as late 2011 I had concluded that mind maps and other visual thinking methods could be very helpful.

As I read about every mind map book around by dozens of authors and bloggers, including the majority of those written by Tony Buzan who makes the claim he is the “inventor” of mind mapping (it is a silly claim no matter who makes it), I rapidly discovered that virtually all visual thinking work focuses on lucrative management consulting that few who use it have strong background in substantive areas like medicine, healthcare, psychology, and related disciplines. What little work exists in mind mapping and other visual techniques within the health and medicine areas indicates a total lack of understanding of visual thinking and is generally painful to read.

I wasn’t scared off by the fact that there was no clear guide to what a person with cognitive impairment and later dementia could do with visual thinking procedures and computer apps to try to improve the ability to cope with dementia. I had, after all, spent 35 years of a successful career as a (nonclinical) psychologist and much of my career had focused on developing new applications of psychological knowledge to addressing medical, psychological and social disorders. And much of the 35 years were spent studying the service care system for those who were least connected with society and traditional healthcare.

I am writing a series of posts (currently more than a dozen) evaluating my experiences during the last six years with a progressive brain disease. Each will focus on a specific test of methods and outcomes I think were achieved.

My studies are one-subject research (often called N=1). I will present results that I believe can be inferred from specific indicators. However, what I discuss is DERIVED FROM MY EXPERIENCE AND MY INTERPRETATIONS OF THE OUTCOMES OF WHAT I DID. I do not claim that any of what I write about is applicable to all people or that what I did should be considered to prove anything as opposed to simply observing it in myself validly or not. And, I see no evidence that the outcomes from what I did have done suggest I found anything to treat or cure or slow the progression of dementia: I never expected them to do so. What I do believe that I have demonstrated for myself is that these methods have helped me maintain a much higher quality of life. Not more days in my life, but many more good days while having dementia. I feel blessed to have received those extra good days.

Most of my “writing” is in pictures. That’s the point of visual thinking.

The following mind map is a general introduction to my work over the past six years. I call it Part 00. Starting with Part 01, I am going to start to present both observations and objective indicators of what happened for me.


Should you not be familiar with how a mind map is drawn and read, please search this website for posts on mind mapping using the search box. Or, go to the home page by clicking here and look at the list of pre-defined searches.

A very simple set of rules for reading a mind map is as follows.

  1. Start at the center of the diagram. Each of the topics (ideas or major branches) that come out of the center represents an issue. Important information about the main issues is given as a series of branches. The organization is in an outline or tree where large branches divide into smaller branches and smaller branches divide into even smaller branches.
  2. Think of the map as a clock face and start at the 1 o’clock position (upper right corner). Read outward from the center along the branches and sub-branches to see how ideas and information about the topics can be arranged in a hierarchical or tree structure. [If you could go up a huge fire truck ladder and look straight down, you would see a structure of tree branches that looks like a mind map. When we study or read a mind map, we are looking at a whole tree — set of information — and then seeing how small and more specific information spreads from the trunk.]
  3. Go around the map in a counter-clockwise manner (to 2 o’clock, 3 o’clock, etc.), following the branches down to their branches and their branches and finally to twigs. Remember that we are looking down at a whole idea [or tree] and its branches and their branches in order to understand how the information represented on these branches goes together and what the most important information is.
  4. The mind map is thus a picture of major ideas followed by its major subdivisions or branches and sub-branches. The “big ideas” are attached directly to the central issue.
  5. A mind map is a way of showing in an image how a set of data pieces or ideas go together.
  6. The pictures, color coding, and fonts are used to designate what is the most important information in the mind map. When you are trying to remember or organize or determine priorities, the pictures, color coding, and size of the fonts can help you store information in “visual” parts of the brain and then retrieve it by thinking about pictures, the color coding, or size-importance of the information.

Click on the mind map below to expand it and let’s start the process of understanding of what visual thinking methods help me to do.

Big Data (in service to the NSA) wants to be able to document what you do and when and where and with whom. All of the current databases that companies and public agencies maintain can now be tightly linked to get a pretty good profile of any individual.

But, these models of what people will do when you ask them to buy a DVD of Thor 2 or a suit from Brooks Brothers, are actually fairly dumb brute force computer algorithms that break down when certain types of problematic data are fed into them.

Hhhhmmm. Some thoughts below in the mind map. Click the image twice for a full expansion.

SCREW UP BIG DATA BROTHER

NOTE: Version 11 OF iMindMap was released the first week of May 2018. At this time (7-1-18) I have been using the program for about two months. I will have a full review posted within a week or two. As a brief note, Version 11 includes a number of enhancements. The program remains the best one for mind mapping and the updates made from Version 10 to 11 are significant and worth the upgrade price.

I doubt that there are many people expert in mind mapping who would disagree with me that iMindMap is the most feature-laden of the more than 100 programs for mind mapping to be found all over the Internet.

Once a year — as promised when the program was first introduced — iMindMap has a new release that provides many new features and usability enhancements. And unlike others, they produce a great upgrade every year on time. And free from most bugs that live in Cupertino and Redmond.

How good is iMindMap 10?

Click on the mind map (actually mind model in my terminology) below to expand its size. For those of you with no patience or dramatic sense of the big build-up, you can skip directly to the “9” branch. iMindMap is the 8,000-pound gorilla.

As a note, my review was conducted about six weeks after receiving the program and using it exclusively rather than earlier editions. I use a Mac only, and my review was conducted on a 2013 MacBook Pro. I have worked with the program both on an internal 15″ retina MacBook screen and a 27″ external monitor. [I actually like using the MacBook screen rather than the larger desktop monitor.]

imindmap-10-review

Chris Griffiths and his team at OpenGenius have taken the work of Tony Buzan and in the process of developing a program expanded and formalized that conception in a creative way that is brilliant in its overall utility and ease of use. iMindMap 10 is my favorite mind mapping program, but most importantly my favorite and most useful thinking tool. For those of you who do not follow my blog in general, I live with Frontotemporal Dementia and iMindMap has served as a “brain assistance tool” for me since 2010 in daily living and in continuing my professional interests in a creative way. I can accurately say that the various versions of this program “changed my life.”

This is a tool formulated by expensive consultants who want to help corporations make more money while at the same profiting from that help. But the tool has come to greatly exceed the original vision and is intuitive to use and most adults and all children can learn to use the program for free using Internet trainings. Don’t be scared off by all of the publicity about a $3500 training and a certificate signed by a consulting firm (not an accredited educational institution). You do not need a course to learn this program and it is not clear to me that expensive courses help you learn to apply this program in the real world. If you are willing to invest a few hours you can be doing adequate mind maps; if you invest 10-20 hours you can be doing accomplished mind maps.

Get over the hype and realize that you CAN learn this program quickly on your own and even more rapidly if you study examples available without cost at many blogs including this one (Hubaisms.com), a depository of many thousands of mind maps at Biggerplate.com, and many other sites including youtube.com where many training sessions are presented.

While there are four “views” in this program, the primary mind mapping module is the reason for using this program. The other three views are largely alternate ways of looking at the same information and data. While they may be “quicker” ways to collect information together from a lecture or library research, at the end they feed their data into the mind mapping module where the actual thinking work, theory building, model development, and communication is done.

I have a few criticisms of the program, but these criticisms do NOT change my overall rating of the program as A+.

  1. The time map module is really just a Gantt chart of interest to but a few mid-level corporate managers and high level executives who have not yet adopted better ways of team management. As a Gantt chart the module is fine, albeit about the same as most existing software in that area. Unless you are like a friend of mine who manages 10-year projects to send landers to Mars with 10,00 team members, I cannot imagine why you would want to use a Gantt chart.
  2. In my view and that of many other potential users, a “time map” is actually a timeline that incorporates mind map features. While others have tackled this issue (most notably Philippe Packu and Hans Buskes), my formulation was the original. The resulting blog post (click here for a new window) has been the most read one about mind mapping methods on my blog site for FOUR years. I’d urge the iMindMap developers to look at my model of time maps which requires a lot of custom work that I am sure they could easily automate.
  3. For almost all mind map users, the future is using pre-made templates designed by content experts. Purchase a template package and then you can then create your own mind maps by adding your information to the pre-designed expert map for your area whether it be healthcare or project management or writing a term paper or designing a research project or selecting the right clothes for a 5 day business trip. At this time iMindMap does not yet have a way of protecting the intellectual property of template developers which provides little incentive for developing templates as a business and therefore stunts the growth of the mind mapping community.
  4. For this program and all of its competitors, the icon and image libraries are never big enough. On the other hand, you can purchase separate icon and image sets from third-party packagers on the Internet if you have special image needs. iMindMap allows you to use such external pictorial elements extremely easily. My favorite new feature is that you can add icons to their library and size the icons in a custom way. iMindMap’s included images should more fully capture the fact that users of mind maps and their audiences are much more diverse in terms of ethnicity, race, gender, gender-orientation, education, and age than the included image libraries. And hey OpenGenius folks, how about some icons for numbers in colors besides orange and lime so that the color schemes of my mind maps are not destroyed if I number ideas.
  5. More free online trainings would be desirable, and most importantly trainings that do not run at the speed of a bullet train. Two minute presentations that cover 20 minutes of material are somewhat counter-productive. The current videos run too fast for new users and at time for even the most experienced users.
  6. My experience — admittedly infrequent — is that Technical Support is fairly “rigid” in that there are lots of forms to fill out before you get a real chat session going and too many requests to send them esoteric files on your computer. All in all, as technical support goes, while everybody is trying quite hard to be helpful, they ask you to conform more to what is convenient for them than what a confused user can deal with. When I want help or to make a suggestion or make a request for a new feature or default, I want to just compose a short email so OpenGenius can get the right person there in contact with me. I most definitely do not want to complete an overly complicated form. Too much technocracy in that process.
  7. Besides the books of Buzan which are not all that useful for learning the program or how to do real visual thinking in real world applications other than rudimentary management, OpenGenius needs to develop some easier access, very practical books that act as “manuals” and present information in more comprehensive ways than is done now. Old fashioned manuals that are (or can be) printed have a lot of appeal to many.

In summary, this is an amazing program that is much more than a program for mind mapping. It is unsurpassed among mind mapping programs. Additionally it is what I call a “visual thinking environment” or VITHEN. My “criticisms” are minor and do not in anyway diminish my overall evaluation of the quality of the program.

My blog at Hubaisms.com on which you are reading this review was designed and “written” largely in “iMindMap.” Most of the mind maps I use to guide my own “complicated” life were developed in iMindMap.

Exemplary job folks at OpenGenius. Version 10 is an additional large step in the evolution of the program and mind modeling.

Banks and online merchants use fairly sophisticated algorithms to identify probable cases of financial fraud and then protect themselves from the consequences of lost or stolen credit cards, etc. One of the most prevalent forms of elder abuse is financial. Aging adults are attacked by predators trying to get them to refinance their homes with reverse mortgages at exorbitant rates; make huge gifts for “kindness” from strangers; and one scheme after another. Sadly, much of the financial abuse is perpetrated by family members. And predatory financial scams are often targeted at aging immigrants to the US. Instead of just checking credit card records for fraud so as to protect themselves from liability, banks could use the same types of algorithms to scan withdrawals from savings and brokerage accounts as well as charges to credit cards to determine if they are atypically large for someone in their 80s.  (At least in California) Banks are mandated reporters (to law enforcement) of suspected financial abuse of elders. Wouldn’t it be nice if banks used the algorithms they already use to protect themselves (at the expense of your privacy) to at least protect older individuals (at a loss of the privacy they already gave up when they opened accounts) from the scum who try to separate cognitively impaired or depressed seniors from their lifetime savings? Wouldn’t that be nice …..

image

smiley10

If you are a dementia caregiver for a family member  or a professional caregiver, I bet I just got your attention. Yes, I really do want you to think about the process of providing care as a scientist would. Observe. Make up some hypotheses. Collect data over some period of time. Analyze your data by looking at your observations and seeing if they confirm your hypotheses.

When you go the doctor with your person living with dementia (PWD), show the doctor some of your “data” and present what you have concluded. See if doctor agrees with you. And in case you wonder, I believe most neurologists and psychiatrists and primary care providers would be delighted to have verbal reports every 3-6 months at follow ups.

Don’t let the words science, data, experiment, analyze, hypotheses, and confirmation scare you.

In practice this is actually pretty simple. Carry one of the ubiquitous little 3×5.5 inch notebooks around with you (Field Notes or Moleskine or Office Depot) as well as a pen or pencil. Every once in awhile, make a short sentence note of what the PWD has been doing as well emotional reactions, interest level, agitation, annoyance, laughing, and other outcomes. Note if the activity was one in which you had to participate and use a lot of energy or if it was an activity that was done semi-autonomously.

You should write down anywhere from a dozen to 50 of these notes in a day. SHORT notes. Write them down when you are not with the person under care, don’t make a big thing out of it, but you keep the small notebook in a pocket. This is not your diary or a diary of the PWD. Rather it is a simple set of observations about what was done when, how everyone involved reacted, how the PWD felt during and after it and how the caregiver felt. Which, if any, of the participants (PWD, caregiver, others) felt great distress/agitation and great interest and happiness.

Every day you should jump ahead a few blank pages in your notebook so you cannot see what you have written already. Don’t look back the first time until at least two weeks have passed

Every week or two (but more often) you should read the notes back a few days or weeks and see if there are some predictable things that happen if you leave your Mom or Dad alone to watch TV or if they are also in the room with others or they did not have breakfast at the usual time or any combinations of the factors. Do you see patterns of people and activities that almost always make the PWD calm and focused and other ones that almost always result in agitation and anger?

As you get into the swing of the research project, every time you go back and review your SHORT notes, you will get a better feel of what does or does not make the situation optimal for the person with dementia as well as for family members and the primary caregiver.

Do you have to take notes? Probably. If you write something short down, you will more accurately remember it and dozens of events that happen throughout the day or week will not get all “mushed together” in your memory.

Oh and by the way, these notes should really be fairly private. You can go back after you observe that your Dad seems to be very happy when a baseball game is on and very agitated when others interrupt the peaceful time and ask him if this is so. But you cannot pull out your notes and say that 72% of the time ….. And you can not use the notes in a punitive way. This latter point is CRITICAL and if you are going to use the data punitively against the PWD or another family member, burn all of your books and stop collecting data. And apologize and be VERY VERY contrite.

To run a great experiment of maximum usefulness to the person with dementia and the caregiver, you need to look at your notes and be objective. Your goal is to find even small things in your notes that can make life better for everyone at least some of the time. And to realize that other things just seem to happen randomly so you should not beat yourself up if your carefully planned outings to the cinema just don’t work because your Mom gets very agitated from the noise level, number of people, and high stimulation from the big screen.

Oh one last thing. If you are a PWD reading this, there is no reason you cannot keep your own research notes and try to find patterns of activities that can help your caregiver live her or his own life better by causing minimal stress to them at the same time you make your own life more meaningful. One of your huge jobs is to support your caregiver, make her or his life less difficult, and express your appreciation.

Let me be very clear. The suggestions in this post are NOT suggestions for treatment nor will the note taking and research process make your any disease process better — notes do not substitute for medical treatment or professional counseling and the level of notes you taking are not part of any type of therapy — but the process of writing down important things and going back and seeing if there are common causes of your moods and social interactions may be very useful.

Here is a mind map with some suggestions for your research project. I hope it works as well for you as it has for me, but there is absolutely no guarantee of that all. And if the process of the “research project” causes any anxiety or other negative feelings among PWDs or caregivers, it should be stopped immediately.

Click the image to expand it.

The Great Dementia Research Study

 

02

[Ok, for all of you researcher types who want to nit-pick, yes I am fully aware that this is technically not an experiment or research study but rather an exploratory program evaluation of an emergent model of excellence. But they don’t teach that in 10th grade so I took a few liberties since everyone remembers their high school labs with hypotheses, theory, observations, analysis, and conclusions.]

 

 

 

 

Click on mind map to expand.

academia and  healthcare  big data

Splatter10

9

Aaahhh… GiGo (garbage in/garbage out). The GiGo phenomenon haunts data analysts, statisticians, researchers, theorists, and someone who loses their identity.

So these huge [health] datasets we keep hearing about … who controls them? what is their validity? reliability? utility? who else gets to see them?

And the data mining algorithms… proprietary or public? based on which tests and algorithms? who developed? who validated? are the methods valid? reliable? have utility?

And the results coming out of big data and proprietary data mining algorithms… reliable? valid? useful? clearly interpreted? limitations stated? misinterpreted?

Is big data and data mining about using world-wide data to find solutions to some of the world’s problems or to sell more books, videos, and cola?

I don’t think anyone really understands the big data sets and their limitations. I doubt that more than a small percentage of the data mining algorithms are valid. I sure as hell do not want somebody blindly using these algorithms on data they do not understand and then helping the government limit healthcare visits for high need, low resource individuals (sound familiar to anyone?).

An experienced statistician-data analyst-methodologist knows that when analyzing a large data set you must spend 98% of your time looking at (and fixing if possible) bad data points. The final 2% of your work is then much more likely to show something that is reliable, valid, and useful.

Big Data may save us, or it might kill us first. Or it might make us Borg or batteries.

Right now the analysts are reticulating splines.

No mo …. GiGo. [Is Nicki Minaj available to record this mantra?]

splines

BIG Data is coming (or has already come) to healthcare. [It is supposed to usher in new eras of research, economic responsibility, quality and access to healthcare, and better patient outcomes, but that is a subject for another post because it is putting the carriage before the horse to discuss it here.]

What is a data scientist? A new form of bug, a content expert who also knows data issues, an active researcher, someone trained in data analysis and statistics, someone who is acutely aware of relevant laws and ethical concerns in mining health data, a blind empiricist?

This is a tough one because it also touches on how many $$$$$ (€€€€€. ¥¥¥¥¥ , £££££, ﷼﷼﷼﷼﷼, ₩₩₩₩₩, ₱₱₱₱₱) individuals and corporations can make off the carcass of a dying healthcare system.

Never one to back away from a big issue and in search of those who value good healthcare for all over the almighty $ € ¥ £ ₨ ﷼ ₩ ₱, here are some of my thoughts on this issue.

Click image to zoom.

who is a health data scientist

Content knowledge by a well-trained, ethical individual who respects privacy concerns is Queen. Now and forever.

Keyword Board

topics and subtopics: who is a “health” data scientist? trained in healthcare? methodology research databases management information systems psychology? psychometrics other public health? epidemiology other medicine? nursing? social work? education? biostatistics? medical informatics? applied mathematics? engineering? theoretical mathematics? theoretical-academic statistics? information technology? computer science? other? conclusions must know content 70% methods 30% must honor ethics 100% laws practice privacy criminal civil federal state other greatest concerns correctness of results conclusions ethical standards meaningfulness validity reliability privacy utility expert in content field data analysis data systems ethics and privacy other member? association with ethics standards licensed? physician nurse psychologist social worker other regulated? federal hipaa state other insured? professional liability errors and omissions continuing education requirements? ethics renewal of licensure regulatory standards insurer commonsense laws go away if not well trained content field data analysis not statistics committed clean data meaningfulness subject privacy peer review openness ethics ethics ethics are arrogant narrow-minded purely commercial primarily motivated $$$$$ blind number cruncher atheoretical © 2013 g j huba

Big data this, big data that. Wow. At the end we will have better ways to sell underwear, automobiles, and “next day” pills (although in the latter case politics and religion might actually trump Amazon and Google). Blind empiricism. Every time you click a key on the Internet it goes into some big database.

“Little data” — lovingly crafted to test theories and collected and analyzed with great care by highly trained professionals — has built our theories of personality, social interactions, the cosmos, and the behavioral economics of  buying or saving.

Big data drives marketing. Little data drives the future through generalizable theory.

Click on the figure below to zoom.

in praise of little data

No, I haven’t lost “it” and this is not a science fiction story.

With the unleashing of big data, big computing, big temptations, and big greed, it is going to be real tempting to develop a George Huba (and also perhaps a Bill Smith or Mary Doe or heaven forbid, a Donald Trump) computer model that can fairly accurately predict from my lifetime experiences whether one will buy a new car next year (and what type and in which cost range and maybe from which car dealer), purchase or sell a home, shift from converse to adidas sneakers, become emotionally distressed if no chocolate is available, and purchase Apple stock to invest or trade. Or run a simulation of one as the CEO of a particular company to determine who gets the job. Or look at one’s medical history and determine whether it is likely thatgrandchildren will have each of 20 expensive diseases that no insurer wants to touch.

Already the IRS runs programs to estimate the likelihood I cheated on my income taxes, Amazon runs programs to estimate the likelihood I will purchase certain books and socks before or after the December holidays, and my credit card company runs models to determine whether it is likely or not that I purchased shoes while on a business trip (yup, they once froze my credit card while I was in DC on business because their computer model says I only buy sneakers).

OK, so the accuracy of the big data scientists is only something like 20-50% now. What do you think it will be when your book purchasing history is fully integrated with your job history, income, ice cream purchases, pharmaceutical purchases, video watching history, total hamburger purchases, and BMI? And then fine tuned with the grade you got in college English, chemistry, or psychology; whether you had a hiking or a beach vacation and if you purchased (used) sunscreen and had a history of purchasing sun hats; the diseases that all four of your grandparents and parents had at different times in their lifetimes. And whether your car is more than 3 years old. And what do you think it will be when we create a generation of data scientists willing to capitalize on huge data to build such models for salaries that will approach those of professional athletes and rock stars? Most of the world’s richest people are already individuals who are promoting and benefitting from big data to predict what you will do.

Ten years from now, the computer models produced of selected individuals will make Mark Zuckerberg, the Google guys, Apple, and Jeff Bezos look like rank amateurs in profiling. The Russians and Chinese, of course, are already well advanced and a threat every time we vote.

[Oh, and by the way while writing this post Google knows that I looked up Mark Zuckerberg’s name and the spelling of adidas.]

I want to tell anyone that wants to develop a mathematical, computer model of me (or my behavior, beliefs, attitudes, skills, history, and future intentions) to cease and desist. Or [more indelicately] fuck off.

Which raises the questions … Do I own the copyright (patent, trademark) to my own life? [And if I do, what are the limits and will violations of those laws by a number of countries and companies be ignored?]

This is not so far-fetched. I spent my whole life becoming the person I am. Does anybody have the right to take all of the big data about me and distill my life down to formulae and algorithms that will explain my past and current behavior and predict what I will do in the future? Should people be allowed to model individuals, I fear that the suicide rate will go up dramatically as people find out how much these models can be used to control them and when they are predicting you will die.

As a psychologist, I spent my career studying people so that we might better understand their fears and concerns, help them better use their full potential, become happier, control their own aggressive or violent tendencies, and generally become the people THEY WANTED to be. And I, nor other ethical psychologist, struck out with the intent to model the behaviors of others so well that the resulting models could be sold to governments and corporations.

Big and huge data, data scientists, companies, and governments need to be prohibited from violating the rights of individuals to “own” their individual lives. If we ever let others “own” our individual identities, we will have crossed into new territory from which there is no return. The technology is almost there to create such individual mathematical models. Russia, for instance, seems to have a pretty good Trump model they are licensing to the Saudis and others.

I was endowed by my creator to own the copyright, patents, and trademarks of my own life… and to answer for what I chose to do with that intellectual property (free will). I choose not to sell my soul to the devil, it’s data scientists, psychologists, and hackers.

A few more thoughts are in the mind map below.

Click on the diagram to zoom.

copyright patent my life

I wouldn’t go on a bus trip with a driver who is unlicensed. Would you?

Who is driving the Big Data bus? Data scientists? Mindless algorithms? Content experts and their teams of data scientist support staff? Marketing? Security firms (including those run by governments)? Terrorists?

I say this once, I will say this a million times … Content is Queen.

Algorithms that are primarily empirical without an understanding of the validity of the data being analyzed and the theoretical issues are dangerous.

An algorithm can predict — and I have no doubt several are doing so at this minute — how happy I will be on a global question (how happy are you?) or a behavioral index (at a sporting event, at the bank cashing a check, four days after the death of a parent) or the perceptions of others (just got tagged in somebody’s photo, got mentioned in a tweet, had a happy blog entry, had  birthday, just had a child born, got back a favorable medical test result, used a smiley face).

I have observed and analyzed and proposed new ways of measuring “happiness” and “anxiety” and “grieving” and “intelligence” for 40 years. I don’t really know what “happiness” or “anxiety” or “grieving” or “intelligence” is although I do know a lot about how experts have tried to define these constructs. I do know that a blind algorithm is not going to answer the question of what “happiness” is.

Do you want an algorithm driving the bus or someone who knows the limits of current data? I don’t want a blind algorithm predicting whether I am “happy” (and happy enough to buy something). I don’t want a blind algorithm predicting the economy. I don’t want a blind algorithm predicting how many healthcare visits I should receive under health insurance.

Content is Queen. The algorithms that drive the organization of Big Data need to be guided by content specialists (psychologists, sociologists, physicians, nurses, economists, physicists, chemists, bioelectrical engineers, etc.) not data scientists without expertise in one or more of the relevant content fields.

If the Queen rules, all will probably be well in the kingdom. If blind algorithms rule we probably will end up as batteries in The Matrix.

I vote (before it is too late) for the monarchy of content. I am not a battery.

candy 5codeHubaisms

Evaluation 4

Click here for an index of all blog posts on Huba’s Integrated Theory of Mind Mapping.

 

HITMM 2016

Tony Buzan’s most controversial rule for mind mapping is to use one word per branch. People ignore it, hate it, complain about it, call such maps words I do not care to repeat here, love it, create with it, blame it, and look at other alternatives.

I find Buzan’s branches with short labels of one word to work pretty well to generate pretty pictures, and to work extremely well in mind maps being used to facilitate brainstorming. You can use this rather blind rule and obtain mind maps that work fairly well. But not as well as they could especially if you factor in the observations of many that most people find it far more confusing to read branches labelled with Buzan’s rigid format.

In the beginning of my theoretical work a couple of years ago, I thought that Buzan’s rule was the best one for labelling branches and channeling the thought process. Over the ensuing years I have come to realize that Buzan’s rule and its resultant maps are too restrictive, promote verbal rather than visual thinking, and become “stringy” especially with curved branches that most people will not understand as well as a mind map labelled with concepts (constructs, summary ideas), many of which require several words to disambiguate.

In the general case, the rule of one word per branch (OWPB) does not work very well in most applied knowledge applications. Medical diagnoses are named with more than one word explaining how they categorized or caused, Oscar-nominated films are named with labels indicating their content and setting and historical period, and complex naming rules apply to great baseball shortstops, serial killers, books, stressors, rewards, people on the street, and great vacation resorts.

If you use the Buzan rules, you are basically focusing on words as you try to find places to put single words to collectively describe some complicated idea. Buzan’s rule reinforces the idea of word dominance rather than picture-visual dominance! If you put one concept on each branch (with several words needed to describe many concepts), you are focusing more on the underlying concept (a visual datum) and not a specific word.

Huba’s rule of one concept per branch supports true visual thinking about concepts that can be pictured. It promotes integration and understanding and theory. Diagrams are better labelled with a full concept than labelled with several successive branches of individual words as Buzan would have us do.

Huba’s OCPB rule promotes full visual thinking; Buzan’s OWPB rule promotes an encyclopedic knowledge of individual words at the loss of the visually complex object. Huba’s OCPB rule promotes full visual thinking. Buzan’s OWPB rule promotes a fracturing of basic concepts into a form that does not portray the full richness of ideas and their visual nature.

Here are some more thoughts in the form of a mind map. Click on the image to expand it.

1concept

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Why does Buzan’s theory fall apart at the idea of one word per branch rather the more correct and useful representation of one concept per branch. I believe it is because Buzan’s original rules of mind mapping from the 1970s and 1980s are based upon a digital model of the brain’s data processing functions (a set of “on/off” switches or those little pixels in your computer monitor that turn off and on to represent a picture in full color) that was commonly misused from the 1950s through the 1980s, and still is even today. The brain and its workings are analog. Lots of information “clumps” together rather than being a bunch of on/off switches in various locations. Analog devices use “degrees of on” to convey information as contrasted to a discrete one/off, yes/no digital device. Also, information is blended from many different sources and brain locations to construct the information as a concept or idea or map within the brain. More precisely, the brain is a stochastic device that mixes multiple neurons firings (primarily digital inputs or sources of information into a more analog continuous form) in part by accounting for a random component of erroneous information added due to a number of conditions (including brain disease effects). Or you can call it an analog device that makes probabilistic predictions. Or you can just say that it is much more complicated than the assumptions underlying Buzan’s one word per branch rule.

In order to maximize the usefulness of mind mapping and to promote greater use for such important issues as dealing with dementia and other medical conditions, personal and professional planning, decision making, communication of visual ideas big and small, learning, theorizing, remembering, and many more, we need to maximize the usefulness of the visual thinking model underlying mind mapping and move to the concept (construct, image based) system of constructing mind maps.

The decision about how to label the ideas in a mind map (whether by labelling them with single words as Buzan requires as opposed to single ideas I call constructs or concepts) is the most important one that is made in mind mapping.

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

I hate clutter. I’ve always had far too much stuff around, usually shoved in an unused closet, the garage, storage. Old questionnaires, old clothes, old pens most run dry by now, old external data drives (in case I need an email from 1990), old office supplies, old books from grad school in the 1970s that no current grad student wants for free (no grad students buy boring professional journals in paper formats anymore), boxes of new file folders (which no one uses in the computer ages), old jeans (as sizes went up and sometimes down over the years), t-shirts from the 1980s, and who knows what else. I also inherited a bunch of family heirlooms (mostly junk but including my treasured Eagle Scout badge and transcript from grad school) in boxes from my mother. The organization systems I have tried to implement since the early 1970s have never really worked that well.

And the reason “disorganized and cluttered” could be dealt with easily was that I had a very organized mind and my memory was like a steel trap; if I had observed or read or heard it, the information was there. And, damn it, I never learned to clean up after myself because there were always more exciting and new things to do. And if I needed something the odds were extremely high I could find it the random box where it had been placed.

And this was before the Internet, before the Internet with Google, before the Internet with voice-controlled Google. Information organization needs have exploded.

And this was before I had a neurodegenerative disease with memory loss, significantly lowered ability to multi-task and make decisions, a big temper when frustrated, lowered ability to separate perceptual field from ground (or the object I wanted in the clutter), and many other dementia symptoms.

Now clutter just destroys me. I waste time every day trying to find things, organize things, decide what to throw out and what to keep, and putting things where I can find them. I get extremely anxious and agitated in clutter but cannot figure what to discard without then facing a world-shattering event without the one paper or piece of clothing or knife or key or medical records that would save the world.

2016_02_09_21_54_58

(more…)

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

:)