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

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Let me start by saying that we are not in the stage of AFTER the recent pandemic COVID pandemic. Rather, much of the world still needs help to address COVID vaccines and other issues like the poverty that lets a pandemic spread. But some countries — and the US is one — are now at the stage where we can start to evaluate and understand our shortcomings to prepare for the future. At the very least, a careful analysis of the problems in the COVID pandemic needs to be done so that rich and poor nations can benefit in the future. And the richer nations need to stockpile medicines and medical supplies and needs for permanent and temporary hospitals and clinics and the poorer nations. And we also need to analyse how and why UNICEF failed the poorer countries.

Bill Gates — the noted fanboy of getting publicity through plagues and pandemics — always runs to the news outlets and says that his approach of giving some of the money he stole from the world through exploitative business practices to medical experts (of which he is not one in spite of the fact he plays one in the media),

The approach of having medical experts lead the fight on a pandemic has been found to be lacking since a pandemic is much more than a medical event. Medical experts provided excellent services and produced the research that led to successful vaccines are a key part. But much more is needed in order to address a fast-moving pandemic. People need to be informed in ways they understand. Medical and social service workers need to quickly retrained in the special skills needed to identify and treat infections. Resources — money, medical providers, medical supplies, training, the poverty of many that limits access to healthcare, how the medical and social systems efficiently perform in a coordinated way, education to children when they cannot go to school because of the risk to themselves and others of exposure to a virus, and many other forms of service and help — need to be shared between the rich nations and the poor nations. And the sharing of resources cannot always start in the rich nations with services provided in the poorer nations last.

Effective prevention and treatment services needs to be provided in fairer and more useful forms in the next pandemic.

The following mind map lists some of the issues that must be identified and fixed for a proactive fight against infectious diseases. People will need to be far more cooperative than during COVID, the rich who pay for most of the fight on emerging pandemics must not always get in line to be first, drug companies and many other businesses must not be allowed to make exploitive profits, and religion and gender and poverty and race must not affect whether a needed service is provided.

Please expand the mind map by clicking on it.

For the last 15 years of my professional career, I coordinated consensus processes to build new local health and social services policies.

It was the best work and most fun I experienced during my career.

I was lucky to work with more than two thousand participants (in aggregate) helping to develop services for drug abuse, mental illness, social isolation, education, child care, medical services, domestic violence, HIV/AIDS, and more.

Here is a diagram of what I believe to be key parts of developing consensus public policy.

Click on the mind map to expand it.


Had various government agencies used a model like mine, they would have been able to get a higher percentage of the population agree to be vaccinated.

From 1990 through 2010 I was the lead evaluator of HIV/AIDS Special Projects of National Significance for the US Department of Health and Human Services as well local projects funded through states, counties, and foundations. In total, I got to visit and know more than 400 health care and social services agencies in 35 states. The HIV/AIDS experience strongly informs a much better approach to the COVID-19 pandemic response and re-opening the economy than is currently being offered by the White House.

The plan briefly outlined here should work well. It answers a number of needs including training more than 100,000 unemployed and underemployed workers and will improve the outcomes of the COVID-19 services. It is also relatively resource-neutral because salaries will be offset by future income tax revenues and decreased unemployment insurance benefits while providing career advancement and job opportunities to a large number of individuals selected to represent the communities from which they originate. It should help cut health disparities.

After hiring, it is my belief that the labor force can be trained to test for COVID-19 and track cases. The testing may require individuals trained and possibly licensed in a relevant healthcare discipline but those requirements could be waived on an interim (or permanent) basis. Training should not take much time as initially a small set of skills need to be developed. See this source for information on the licensure-training waiver for emergencies on a state-by-state basis: waiver rules.

Click on the image below to expand it.

In March 2018, @USNews and @AetnaNews published key results from their study of approximately 3,000 US counties. Each of these counties received a total score as an index of how healthy the community is as well as scores on 10 component parts of being a healthy community. Eighty indicators of community health were developed from standard, well-constructed, and valid datasets.

The Healthiest Communities rankings are based on well-collected longitudinal survey data from US government databases and those of well-established, not-for-profit organizations.

Click here to see the full report in a new window.

My professional conclusion is that the study is valid, reliable, and relevant. The index scores are based on a combination of expert judgment from independent professionals and data sources that are among the best available. Statistical analyses appear to be appropriate and expertly applied. Of course, as with all such studies, over time additional analyses can be made, interpretations can be added by experts of many disciplines not limited to health, and supplemental quantitative (numerical) and qualitative (judgment) data can be collected.

The report on America’s Healthiest Communities provides a summary of the top 500 communities. The remaining rankings are not revealed as the intent is to identify excellence and study it to establish models for other counties that are also working to improve the quality of life for their residents.

Data available on each community includes well-constructed indices of the following characteristics listed in the mind map below. Click on the map to increase its size.

3D What is a Healthy Community ##### U.S. News & Aetna Foundation

I spent more than 25 years in my post-doctorate career studying the health of communities throughout the USA, including  a) small “frontier counties” too small to be considered rural where there were 5 times as many cows as people and the trip to a doctor was more than an hour for more than 50 percent of the population; b) the fourth largest U.S. county in a location on the Mexican border; c) large-city neighboring “bedroom” counties; and d) healthcare systems in more than 100 other U.S counties. My work (in collaboration with my business partner Dr. Lisa Melchior and our staff at The Measurement Group) was primarily focused on developing high quality, effective, and accessible care and treatment for people with mental health problems, drug and alcohol abuse and addiction, HIV/AIDS, extreme poverty, unstable families, inadequate or housing, poor education, immigration status, criminal justice system involvement, dependence on public-supported health- and social-care systems, and legal unemployment with a subsequent dependence upon “illegal employment” such as selling drugs and sex work in order to support themselves and their minor children.

Dr. Melchior continues our work.

As we worked with health systems and clinics, what I concluded was that a very comprehensive service system with widespread support among residents, service providers, and elected officials was necessary to make a community healthy. It was clear that all of the major stakeholders in the system need to communicate clearly to the other stakeholders about what they could and could not do with available resources. Stakeholders needed to learn to how to leverage their resources with those of other stakeholders to provide better services for a lower cost. A permanent system of making decisions and sharing resources and improving services needed to be formed and nourished.

The basic components of our work included assembling data from sources such as surveys, focus groups, interviews, and public databases. We presented these data to groups of stakeholders and facilitated discussions on how various systems such as healthcare, public housing, law enforcement, and education-training could work together and share resources. Progress was monitored and evaluated and new cycles of data gathering, communicating, discussions, and program alterations were conducted.

The following diagram shows the steps our process went through in order to build a self-sustaining system of interdependent services and joint decision-making in order to make a community more healthy. Click on the mind map to increase its size.

It is often said that “it takes a village” to plan and implement long-lasting improvements in a community. It does, but it takes a few other things also as well. Click on the diagram to increase its size.

It Takes a Village

 

 

6

The focus of the blog is on the issues shown below. If you click on the image, it will expand.

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WHAT ARE THE  OUTCOMES OF HIVAIDS

World AIDS Day is December 1, 2015.

We are closer but still very far away from solving HIV/AIDS. The UN Goal of 2030 for the effective stop of HIV will not happen with the current international politics of HIV/AIDS and the huge global disparities in income, infrastructure, and other resources.

2030 is possible, but to meet that goal, we are going to need a lot more compassionate and adult behavior in the world than we have ever had during the 64 years of my lifetime.

Doable? Yes. But you better start doing your part to do it.

To fix HIV/AIDS, we have to fix income disparities.To fix income disparities the rich of every country in the world need to be taxed at 100% on any individual net worth greater than $X. It may be more difficult to define an $X that the world will accept than it was to develop the theory of relativity.

Doable? Yes. But not without some new definitions of the rights and responsibilities of rich brats like Donald Trump.

I first published a version of this mind map on World AIDS Day in 2011.

Since then, I have updated the map every year since.

This is the mind map for 2015. May the power of visual thinking help convince all that some new directions at a larger cost need to be implemented to meet the United Nations goal of eliminating HIV/AIDS by 2030.

Please click the map to expand.

2015 ELIMINATING HIVAIDS  FROM THE PLANET  G J HUBA PHD  DEC 1 2015

I have personally worked in or designed and led several large service initiatives including those on HIV/AIDS, drug and alcohol abuse, PTSD, domestic violence, minority services, and preventing transmission of HIV from a mother to her infant at the time of birth.

The first thing you do in public efforts to provide accessible, sensitive, appropriate, valid, needed, and culturally competent research and services is to add consumers of those services to your Advisory Board. Yes they might be quarrelsome at times and not understand all of the (usually trivial and inane) fine points of research and government regulations, but most professionals agree that adding consumers of the potential services and research is quite important in developing excellent services. Many also believe that the time of individuals who are consumers of the services studied should be paid at the same rate as the usual suspects (advocates, academics, and other self-important participants).

The American Academy of Neurology and the American Psychiatric Association are currently taking public comments on a process in which they developed draft consensus measures of Dementia Quality. Looking over the list of those who participated in the process I see no representatives of people with dementia.

Idiocy. And damn it, I think that I have a professional background, a proven research and healthcare record, and status as a Hall of Fame measurement psychologist that equals or exceeds that of the listed participating representatives. I also have dementia and write about dementia services. I personally am not looking for work — this blog keeps me as busy as I can be — but it is important to note that I could easily identify a half dozen other professionals with my level of expertise who also have a dementia-syndrome disease. So far as I can tell, none of the dementia-related public initiatives is including representatives of the people living with a dementia-syndrome disease.

My point is quite simple. Dementia research, services, and public policies can be made much better by including people living with a dementia-syndrome disease or condition. And it is not that hard to find highly qualified individuals who are in the early or mid-stages of dementia.

This is a huge failure of government, non-profit organizations, dementia charities and advocacy groups, and Foundations.

My free advice to you is that you should get GYST.

The current advisory group I am working with has a consensus in support of my recommendation.

Blue Old Wizard - Confused 9 9 Geek Boy - Confused 12 Cartoon Rabbit - With Arms Out Blue Tie Business Man - Confused

 

JANUARY 27, 2016

The new members of our committee also agree with our existing position.

The BIG D — currently the most dreaded way to die in the world.

I occasionally get tweets when I write columns on living well with dementia stating that the writer will — if he or she gets dementia in later years — consider committing suicide. At times people imply that I should also.

I regard most of these arguments as emotional masturbation although I also know that some people will go through with such a plan. I feel very sorry for them and wish that we had a better mental health system to deal with their pain and confusion.

You saw your Mom or your Gramps suffer (or at least you thought they were suffering while they were causing work and other problems for you). It scares you, it enrages you that lifetime savings are wiped out and do not pass between generations, it messes up your own relationships with your own nuclear family. You feel powerless and guilty and angry and helpless. And very, very tired.

The BIG D your Dad and Grandmother had are becoming the little d. Treatments are being developed for all types of dementia causing conditions, and you can expect them to be available in the not too distant future of 10-20 years. Behavioral interventions can greatly improve quality of life. Treatment will get less expensive over time (and even less so if we nationalize Big Pharma for the good of the world). Improved housing, professional caregiving, education of healthcare providers to make early identifications of impending dementia, and cost saving measures make it easier and cheaper to have a continuing good quality of life while living with dementia. Yes, I am too advanced to probably benefit much from forthcoming huge changes in dementia care and treatment, but my children and yours will which is something to look forward to.

OK, you are sitting there saying this guy is full of shit. Not really. In 1992 I started two decades of evaluating and helping improve some of the most creative and innovative programs for HIV/AIDS treatment and prevention funded by the US government. From 1992-6, I watched literally dozens of my friends and coworkers die of AIDS 20 to 40 years before their life expectancy in an AIDS-free world. In the mid-90s I had dozens of additional friends in their 20s through 40s with HIV/AIDS who had a life expectancy of a few years and a miserable death ahead of them. Then came the medical miracle of antiretroviral drugs. Almost all of the folks I was close to who moved onto the new treatment regimen are alive now 20 years later and living pretty “normal” lives. Many moved from being uneducated street youth to PhDs and program administrators and federal employees and teachers and parents. Yes, parents. And quite good ones. Also, good taxpayers.

The BIG H (HIV/AIDS) was tamed for those who could be identified early and were in countries where antiretroviral drugs could be made available for a reasonable cost within differing levels of national average income. Much more remains to be done to fully tame HIV/AIDS, especially in Africa, a continent ignored by the rich nations. But the tools are there and the money should be. Should the big governments of the world not be willing to make this happen, perhaps the big religions of the world who have amassed reserved of valuable property and cash could use their funds to solve these medical problems.

I have no doubt the BIG D can be tamed like the BIG H and that the same problems with sharing the costs for treatment in the developed and undeveloped world will occur. And I greatly doubt various political factions will want to spend the dollars needed for research and developing treatments and making them universally available along with lifestyle training programs to help prevent certain kinds of dementia.

Stop thinking about suicide if you get dementia and start thinking about electing politicians who know that the horrible diseases of the past and their somewhat milder versions of the present can be tamed far more rapidly if resources are turned into medical research and treatment rather than bombs and trying to control countries with different religions and peoples of different colors than your own. Elect someone who has the guts to take on the aggressive capitalists of Big Pharma and conservative governments.

And do not send me tweets suggesting that you are morally superior to me because you will commit suicide to save society money if you get dementia. I think that is VERY wrong.

The BIG D is going to be a disease that will be solved eventually. And you will have a milder and less lifestyle disrupting version than your grandparents and parents. Speed up the process of making these advancements by fighting to devote resources to the development of the solutions. Emotional masturbation that maybe you will commit suicide in the future to “save society the cost after it is helpless for me” is not doing a damn thing to solve the mysteries of the neurological diseases that cause dementia. Devote the later stages of your life to looking for solutions, not giving in and accepting misery for yourself and your descendents or thinking Donald Trump is going to solve your problems.

Dementia care and treatment is changing for the better in a manner that is far more rapid than the garbage you read about in the news channels on the Internet. On the other hand, the politicians who allocate public monies are being more stoopid about health issues than ever, a fact rarely stated in its full ugliness in the press.

Here is how I see the situation. Click on the mind map to expand it for easier viewing.

YOUR DEMENTIA EXPERIENCE WILL DIFFER FROM THAT OF YOUR GRANDPARENTS AND PARENTS

And don’t give up. It is not going to be as bad as it was for your grandparents and parents. And you have lots of technologies and treatment innovations to make your quality of life better.

And use the time you gain from the advances in dementia treatment and care to help speed the progression of the work to solve this and all other diseases.

At this point in my life, I am much better at drawing pictures, or structured learning and thinking pictures (mind maps), than writing out a long list of arguments.

I have “street cred” in making the points in these two mind maps. Been there, done that.

Before making the main points I’d like to tell a short story. In addition to the information in this first mind map, between 1993 and 2010, I ran many “evaluation and technical assistance centers” for the US Government on their identified and funded innovative and targeted HIV/AIDS Services programs.

The biggest lesson I ever learned as a professional during this period was that the people with the disease knew a lot more about the problems with the service system (and how to fix them) than I did. I was “schooled” in 1993 by 19-year-old Scott, a brilliant young man who was the President of Bay Area Young Positives, a peer organization. Although he never graduated from high school before he graduated to the streets of San Francisco, he knew far more about how to fix the system than I did. Before I could meet with him at a next scheduled meeting four months later, he had died from AIDS.

I thought about Scott for years as I do about many others like him I met over the next five years who have been helped by the miracle of modern combination antiretroviral therapies. In my professional judgment, at the time I knew him, Scott was probably in advanced stages of AIDS-related dementia. Yet at that time, he knew more about why the service system failed than I did. Even though he was handicapped by the communication system of the time (words and more words and anger and more angry words), he did make it clear that we were all fucked up and did not understand facts standing right in front of our noses. He was right.

Pictures and websites and 25 years of advancement in communication methods should make us better at jointly solving problems with the service system.

Sadly, in the area of dementia, these methods have not been used to their full potential.

We have to fix the websites of most dementia-related organizations. Those websites are not providing information to all (INCLUDING and especially to persons with dementia) as well as they should nor are they encouraging all to react to the contents although they do encourage all to make contributions, join research studies, visit their web stores, and come to their clinics for treatment.

Ask someone with dementia how they feel about your dementia website. You might get “schooled.” And that would be good.

Click on the images to expand them.

Why I feel I can “yell” at you …

ME SELF-PROCLAIMED DEMENTIA EXPERT

and what I have to say …

A DEMENTIA ORGANIZATION WEB SITE NOT FRIENDLY TO PEOPLE WITH DEMENTIA IS NOT OK

The two most important doctors I have for trying to remain self-sufficient are Dr Google and Dr Me. Both are largely dependent upon useful and quality and relevant information on the Internet. Unlike my providers who require appointments weeks (months) in advance, Dr Google and Dr Me are available to consult 24/7 without cost. Make your website communicate better to Dr Me (who has dementia) and you will help him and Dr Google maintain my ability to understand and care for myself.

Make it so. Please!!!

PS. The methods I advocate throughout my blog and book are ones that cost pennies per day for an individual to use and which would also greatly improve websites very inexpensively. Mind maps, sketchnotes, cartoons, doodles, color coding, informative videos … all ideas that work better and are not expensive to implement.

Click image to expand.

JULY 4 THOUGHTS  FOR A BETTER  USA

modified copy

https://twitter.com/kim4Commission/status/407296707928403968

https://twitter.com/nakedken/status/407278523666427904

stop making publicizing your disease your end goal. You and the other 350 or 3,000 or 25,000 or 199,999 people with the disease will hardly be heard above the shouts of those advocating for funds for cancer, coronary disease, diabetes, HIV/AIDs and other diseases affecting many medically and/or politically.

And in the current system of new drug development, Big Pharma is going to be more interested in developing treatments for gastroenterological disease (heartburn), STDs (avoidable), erectile dysfunction, safer birth control, cancer, heart disease, and obesity.

Get smart.

Your 5,000 sufferers should collaborate with the 350 individuals with another disease and the 199,999 with another and all of the rest of them to be a large and huge advocacy group for encouraging change. Your illness group may not be the first to get attention if changes are made, but somebody will be and as treatments are developed for one rare disease they might also be applicable to other related rare diseases.

This is clearly a situation in whch cooperating with those with other rare diseases will ultimately yield better results for all than screaming ME FIRST on the Internet in social media.

The existing laws and administrative rules probably do not go far enough in encouraging drug companies to develop pharmaceuticals for rare and orphan diseases. Advocate for better incentives and decreased bureaucracy for developing new pharmaceuticals to treat a few thousand. Maybe even the staid Nobel Prize committee will even make an award to somebody who makes a huge research contribution that advances the development of treatments for a rare disease and top research universities will create endowed professorships for high talented physicians and others who study a rare disease.

Click image to expand.

ENCOURAGE MORE RESEARCH  ON RARE AND ORPHAN DISEASES

I corrected a huge mistake in my thinking about mind maps during 2010.

I had started using the program Mindjet MindManager for mind maps at the time version 2 of the program was released. Over almost 20 years I used occasionally used MindManager, alternating periods of a few days of intensive use with months of ignoring mind mapping.

I hardly considered organic mind mapping in the early days because: a) I cannot draw clearly or even print clearly even though Tony #Buzan says everyone can; b) I am a “tech guy or nerd” and damn it, why would I hand draw something if a computer program was available to turn my brilliant thoughts and words into pictures.

Secondarily, how could I possible use wavy lines with labels in all kinds of orientations and colors best-reserved for a child’s coloring book or a circus? I worked with groups of federal/state health policy makers, physicians, psychologists, social workers, nurses, counselors, grant funders, politicians, and public advocacy groups. Colors that looked like they came from a crayon box and drawings that looked like they were drawn by a second grader would be seen as childish, silly, not useful, and (most importantly) disrespectful by a group of senior professionals in the health/social care areas.

Idiot.

I bought every upgrade of MindManager over 20 years. Those upgrades were pretty expensive for a small consulting firm charging public sector fees less than half of those of private-sector companies.

I had strong misgivings about the MindManager mind maps I presented in meetings about HIV/AIDS services, research designs, elder abuse, optimally training geriatric nursing leaders, statistical analyses, and the many related topics I worked on during my career. Nonetheless I kept presenting the maps and using them in written reports.

I came to the conclusion that the method of mind mapping was primarily a way of presenting outlines in a somewhat novel way that introduced a lot of “white space” into diagrams typically plagued with too many words on a boring and ignored PowerPoint slide. Business executives liked the MindManager approach since it was in their comfort zone (outline in a picture).

I was becoming a Bleeping Idiot for continuing to use MindManager style Outline Mapping.

2010

I read about the iMindMap program in a variety of tweets from individuals I followed on Twitter and started trying the program and then reading much of the collected writings of Buzan; I watched some of the YouTube videos derived from his telecasts.

I thought organic mind mapping was kind of cool. It interested me at first because it would lead to presentations that were far more interesting than the ones with PowerPoint I suffered through 100 times a year (and gave myself to large audiences at least 50 times a year).

A couple of months later I decided that I would give an entire presentation (and the final report) using iMindMap 5 maps to a group at the US Health Resources and Services Administration, the major US government agency for financing public healthcare clinics and programs (and especially those targeted to HIV/AIDS services).

The project was to develop a framework for teaching program managers of US-funded, locally-administered African projects on increasing the number of nurses trained in and providing clinical services for treating HIV/AIDS. The topic was about program evaluation theory and implementation. Program evaluation can be a very technical area dominated by methodologists who speak “numbers” not concepts, acronyms, and is often perceived as excruciating by its participants.

The meeting was with two senior federal grant administrators and USA-funded program managers and service providers, half from the Columbia University (USA) and half from Africa who were part of a six African-nation collaborative team.

I developed a dozen pretty large mind maps on evaluation goals and results, ways to conduct the evaluation and why, how to improve services using the results, respecting clients, and other issues including ethics and reporting results to the funders. The general topics were ones I had discussed with hundreds of groups in the prior 20 years.

All of the mind maps were developed in iMindMap using circus colors, curves, cartoony clip art provided in the program, font coding, and a nonlinear organization. I wanted to animate the presentation by jumping around the map “automatically.” This was before mind mapping programs in general (and iMindMap specifically) included presentation animations. At the suggestion an expert on visual thinking, Roy Grubb (a Twitter buddy from Hong Kong — @roygrubb), I used the program Prezi to animate the jumps around the map into to what could be a presenter-guided talk or a self-running kiosk video.

To say that the presentation was well received by the audience of program managers, senior policy makers, and medical professionals from the USA and various African nations) would be a gross understatement. The presentation was praised, a couple of physicians said this was the first time they really understood what evaluation was, and perhaps more concretely, the participants insisted on having the one-hour presentation evolve into a two-hour greatly interactive and animated group problem solving session that pissed off the US State Department because the participants arrived to their meeting at State an hour late. The evaluation for the next five years of an extremely large funding program in Africa on HIV/AIDS treatment capacity was altered. A subsequent program evaluation project for the African project was funded to our company.

I was just presenting the same-old/same-old conclusions I had evolved over two decades. But the information after I reformatted it into a #Buzan style mind map using the iMindMap program forced me to re-think the overall system of evaluation I believed in so as to prepare a liberating and valuable experience for the audience. The new mind maps were nonlinear THEORETICAL MODELS accessible to individuals with training neither in program evaluation nor mind mapping.

By contrast, the old way i would have presented the same information in MindManager or as bullets in PowerPoint was as nothing more than a formatted outline (or what I now call an Outline Map) and my thinking and that of the participants would not have gone in such creative directions.

I was pleased to find out that one of the meeting participants had been trained in a workshop by Mr. Buzan and that she felt that the presentation mind maps were the most Buzan-like she had seen since the training.

The hundreds of mind maps I have made for this blog have reinforced the conclusion I reached from that HRSA meeting on HIV/AIDS that computer-assisted, Buzan-style organic mind maps and visual thinking methods are far superior to the “traditional” linear methods that are forced by some computer programs that do not encourage Buzan-style thinking and mapping.

Bright colors, contrasting fonts, curvy lines, cartoon graphics, one word per branch, nonlinear organization …

I joined the Circus.

Big Data Train Wreck DSM5 Tournament huba's laws of  mind mapping

The only way I see to develop effective medical treatments and care models for many of the thousands of rare diseases is to pool the RESEARCH resources that individual countries are spending and the data countries are collecting about individual rare diseases and put those research resources under international control for prioritizing research agenda and ensuring public access to ALL results and research data.

Yes, I know the USA (probably the largest resource contributor) Congress will go in front of the television cameras and say that the failure of the United Nations and the disproportionate contributions to a pooled resource fund will ensure failure. They will point to the failure of the world to effectively coordinate collaborative research on HIV/AIDS and point to politics, homophobia, disrespect, and the hatred of American politics by certain national and fundamentalist groups and say we would be wasting our money by letting Africans and Arabs and the Russians and Chinese and Indians and Asians and South Americans collaborate with the USA on research and ensuring that research leads to effective treatments for at least some rare diseases.

Enough already. Let’s rise to the occasion of solving resource limitations in studying rare diseases and get an effective mechanism in place for expanding the impact of admittedly small research efforts by individual countries through international cooperation. I trust the governments of the world to collaborate, contribute as they can, and help us start to get some of these diseases treatable. Disease knows no boundaries.

In the last century we collectively developed very advanced medical research techniques. In this century we need to use these methods to solve all of the medical problems possible by putting aside the nonsense politics and nationalism and individual egos and predatory profits and focus on solving many medical issues and ensuring access to effective treatment world wide.

Here’s a way to start. Any yes, this is a test of our humanity and commitment to universal human rights of which medical treatment is but one. But let’s start somewhere that should be relatively easy to agree on (and let a few hundred angry politicians in the USA know that the world considers them bratty children and cannot tolerate their obstructionist and oppositional behavior).

Click on the image to expand. And let’s start the process of collaboration.

rare diseases time for effective international cooperation

EU rare disease rare disease

I was sitting in the office of an individual designated as an “essential” federal employee at mid-morning on November 14, 1995. We were meeting at the US Department of Health and Human Services, Health Resources and Services Administration main offices in the Parklawn Building in Rockville, MD.

My federally funded Evaluation and Technical Support Center for a HRSA Initiative on Implementing the zidovudine protocol for preventing HIV transmission from HIV-positive mother to her child during birth was meeting with 10 federal grantees the next day in Baltimore. The meeting was mandated by the HRSA funding agreements.

Each project had at least three staff in transit to Baltimore (most by air) for the meeting the next day. At least one representative of each project was a woman living with HIV/AIDS; this was mandated.

The bell rang at noon in the Parklawn Building. The loudspeakers had started squawking earlier reminding all non-essential employees that they must exit the building by noon. Guards came through the building reminding people to leave. It was eerie to be in the second-largest US federal office building with almost no other people around.

I met with the essential employee, the head of a very large program on HIV/AIDS treatment. She could not tell me whether to have the meeting the next day. While she could guarantee that the representatives from the projects would have their travel reimbursed she could not tell me whether the scheduled meeting rooms, scheduled food service, and other costs would be covered although she would allow me to pay for costs already agreed to through contracts with the hotel. She did note that we could not use use the meeting room we had paid for nor eat any of the food we had pre-paid. The meeting would no longer be a federal meeting. Everybody there was just a private citizen meeting because they wanted to be there after being stranded by having flown to a mandatory federal meeting that was cancelled without notice. No federal employee, however, could be at the meeting because they were not working and they were not allowed to go to any activity that could be construed as federal “work” since they might then demand payment for their time.

I had to tell this to about 50 attendees at 9 am on Wednesday morning. The Maryland Dept of Health agreed to let the group use space at their offices 15 or so blocks away. Everyone walked over there in freezing rain. Maryland made available a conference room that could seat about 12 comfortably, about 25 uncomfortably, and the rest squeezed in and stood. The State Director (part of the group) lent us her personal 10 cup Mr Coffee to brew coffee. In trying to make enough coffee for 50, I broke it, and when I returned to California, I sent her another one by FedEx because I was a little annoyed that she got very upset that I had dropped the $20 machine and had announced to 50 people that I was the reason there was no coffee.

After about an hour or so of chaos and having everybody totally upset — as they should have been — about having about 15 women with HIV (many with advanced stage AIDS) in an overheated claustrophobic facility along with another 35 people in an overheated claustrophobic facility, I decided that the company I owned would personally guarantee the costs for the meeting facilities and food that had already been paid — if the government asked for the money back from anyone because I had decided that those who had come to Baltimore in good faith could meet in the rooms already paid for and eat prepaid food that was going to be thrown out. As I recall this was probably close to $5,000 or more. Fortunately no one ever asked me for the money back and since I over-ran our budget by far more than $20,000 (which we never billed) in part because the feds had totally screwed up the process, that we were even. And, no woman with HIV had fainted or otherwise hurt herself during the meeting because we did not have healthy conditions.

The grantees were — as would be expected — totally pissed off. The initiative ran for several more years, but in a fairly “inefficient” way. Chaos. The feds went back to work after Thanksgiving, but then went out again for more than a month starting in mid-December when Newt Gingrich and Bill Clinton still would not do their jobs. When the budget was settled in mid-January, the government announced it would pay all of the federal employees for all days they had been sitting at home in Maryland and Virginia and the District playing in the snow and worrying about their personal finances.

A demotivated, angry workforce went back to work to deal with a number of demotivated, angry contractors and grantees. It wasn’t the same for another two years.

Obamacare was passed by a majority of the US Congress, all of whom had been elected by the majority of their constituents. It was signed into law by a President elected by the majority of the US electoral voters as specified in the Constitution. When the Constitutionality of Obamacare was challenged by those who did not like it, the majority of the Supreme Court Justices, each confirmed when appointed by a majority of the US Senate, decided that Obamacare was constitutional.

Each step of passing Obamacare into law was done according to the specifics of the US Constitution.

Those attempting to derail Obamacare by using certain procedural technicalities in ways never intended and just plain silly, are acting in opposition to the approved Affordable Care Act passed by the Congress and approved by the President and the Supreme Court according to the procedures specified in the US Constitution.

Are those in Congressional representatives holding the budget hostage Congressional “Leaders” or (in words attributed to Al Gore) “terrorists?”

Today, I hope that the US government will decide to “feed” those sitting around waiting for their US Congress and Executive Branch to meet their Constitutionally assigned responsibilities that the elected officials of the United States have sworn to uphold. Fortunately World War II vets in wheel chairs were allowed to look at the barricaded World War II memorial on the federal mall today (the barriers were lifted by Congress members in front of TV cameras); my further hope is that all of the veterans in VA hospitals get fed dinner tonight whether or not the TV crews are parked in front of the facilities.

Those elected officials who claim that their Tea Party is as much against “taxation without representation” as the founders were in 1776, obviously have not read the Constitution resulting from the actions in 1776.  Thankfully, a majority of the Supreme Court justices and the President were in school that day.

screenshot3

 

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ELIMINATING AIDS FROM THE PLANET  G J HUBA PHD  JULY 2012

In November 2011, I first distributed a framework for getting rid of HIV/AIDS once and for all. Yes, it will be expensive. Yes, it will take international cooperation. Yes countries, agencies, and individuals have to stop behaving like spoiled children. Yes, it can be done. My ideas are shown below in a slight update made in July 2012.

Here is a little cost comparison I made last year (numbers were current in 2011). This is definitely a case where a mind map can communicate better than a government spread sheet in Courier typeface.

Click image to zoom.

Save $1,410,000 tomahawk

In the current healthcare system, the people who most need help are the least likely to get it.

Think they need an annual physical, some vaccinations, antibiotics when they get an infection, a scolding when they get too fat, and a lecture when they smoke?  Think again.

How do you deal with an individual who comes into an emergency room (or in the era of Obamacare, the office of a primary health provider) and is “sick.” Is it because they are homeless or abusing drugs or never had regular healthcare before or struggle with a psychiatric diagnosis perhaps developed as a survivor of rape, incest, or alcoholic parents?

Who do you think is in the current publicly-supported healthcare system of last resort? If that panhandler at the stop sign comes to see a doctor, the patient will typically be hungry, a chain smoker, unable to tell a coherent story or provide a medical history, and prepared to blame a doctor for not being able to fix all of the problems the person has encountered through life. Can you separate a life of living on the street while using drugs and eating fast food with lots of fat and cholesterol from what is found in a simple annual blood panel? Can you tell the medical patient to start eating in a healthy way (when the patient is homeless, has no job, has no money for Whole Foods Market)? Can you expect these patients to adhere to a doctor recommended treatment-intervention which might include lots of pills for an unhealthy lifestyle or because of HIV/AIDS?

High need patient-clients in the healthcare system have many needs and difficulties. Fix one and you see three more problems.

We need a system that can deal with patients-clients that have many of the problems shown in the mind map below. Concurrently. Simultaneously.

or alternately (same model, different way of viewing it) …

PS. I know that effective and cost-effective healthcare/socialcare agencies can be built because the US government has created dozens, if not hundreds, of these programs as “demonstrations” that the concept works. The program is then funded for about five years at a “fair” level and after five years receives no further federal funding (the program is then supposed to have a rich aunt or a “corporate” fund raising department). We KNOW that comprehensive service systems can be built, be effective, use resources appropriately and frugally.

It just takes a village.

Oprah, where are you?

Who influenced me over the years? Below are lists of those influenced me from close and personally and those who influenced me through their work. Buddies and folks who took the time to teach me how to see and learn. Most of these folks were close and supportive friends; some aggravated the hell out of me; some did both …

  • Vivian Brown, CEO, PROTOTYPES of Los Angeles
  • Claire Fagin, Former President and Dean of Nursing, University of Pennsylvania
  • Jerry Singer, Psychology Professor, Yale
  • Mathy Mezey, Nursing Professor, New York University
  • Bill Lawlor, Psychology Professor, Fordham
  • Frank Stallone, Research Psychologist, New York State Psychiatric Institute
  • Ron Fieve, Psychiatry Professor and Clinical Trials on Lithium Chief, New York State Psychiatric Institute
  • Bernie Segal, Psychology Professor, University of Alaska
  • Pete Bentler, Psychology Professor, UCLA
  • Geoff Maruyama, Education Professor and Vice Provost, University of Minnesota
  • Abigail Panter, University of North Carolina
  • Doug Jackson, Psychology Professor, University of Western Ontario
  • Michael Browne, Psychology and Statistics Professor, Ohio State University
  • Joe Prevratil, CEO, Archstone Foundation, Long Beach
  • Jeff Tanaka, Psychology Professor, New York University
  • Bob Abelson, Psychology Professor, Yale
  • Trudy Larson, Dean and Infectious Disease Professor, University of Nevada School of Medicine
  • Don Quinlan, Psychology Professor, Yale
  • Lisa Harlow, Psychology Professor, University of Rhode Island
  • Pat Archbold, Nursing Professor, Oregon State Healthcare University
  • Doug Anglin, Research Psychologist, UCLA
  • Lisa Melchior, President, The Measurement Group

 Influencers from afar through their publications and other work, conversations, emails, or Internet interactions. I don’t agree with everything most of them said, I agree with nothing a few said, and all pushed me to think by their own hard work …

  • Stan Mulaik, Psychology Professor, Georgia Institute of Technology
  • John Tukey, Statistics Professor, Princeton
  • Roy Grubb, IT Consultant, Hong Kong
  • Susan Whitbourne, Psychology Professor, University of Massachusetts
  • Lyle Jones, Psychology Professor and Provost, UNC
  • Barbara Aranda Naranjo, Administrator of HIV/AIDS Programs, Health Resources and Services Administration, Rockville
  • Tony Buzan, Originator of Modern Mind Mapping and Management Consultant, London
  • Karl Joreskog, Statistics Professor, Upsalla
  • Dwight Eisenhower, Supreme Commander of European Forces WWII and US President
  • Elizabeth Woods, Professor of Adolescent Medicine, Children’s Hospital of Boston & Harvard
  • Ira Manson, President, Western Psychological Services
  • Gloria Weissman, Health Resources and Services Administration, Rockville
  • Paul Krugman, Economics Professor and Nobel Prize Winner and NY Times Columnist, Princeton

Within categories, the names above are in random order.

The really important functional professional bio.

veni vidi didici

I came, I saw, I learned (except when I was too bleeping arrogant to listen).

 

Click on the mind map to expand it.

 

george huba  the summary


Click to open a window with my Curriculum Vitae in the standard form that is supposed to strike fear into the hearts of all who would compete against me for grant funding. A former co-worker (editor) said upon looking at my CV and those of other PhDs in the office … “I guess it means you know how to write.”

The following is a short professional bio that I have put into hundreds of scientific grant proposals and marketing materials. Kind of boring.

George J. Huba, PhD, President of The Measurement Group LLC, is a 1977 graduate of the Psychology Program at Yale University and is a Fellow of Divisions 5 (Evaluation, Measurement, and Statistics) and 50 (Addictive Behaviors) of the American Psychological Association; he is also a Fellow of the Association for Psychological Science. Dr. Huba has held faculty appointments at the University of Minnesota and UCLA and has over 300 publications on methodology, program evaluation, and psychological testing, especially related to health care, social services, substance abuse, mental health, and HIV/AIDS services. Dr. Huba was the Vice President at Western Psychological Services, a major psychological test publisher, and in that role developed both paper-and-pencil and computerized tests. While Dr. Huba has published in the areas of quantitative psychology, measurement, and program evaluation for 30 years, his research has expanded in the past decade to include significant work on qualitative analysis methodologies in program evaluation and he has published a number of papers using such methods or mixed-method evaluations in conjunction with converging quantitative indicators. Dr. Huba is also expert in conducting in-depth interviews with service providers and service administrators (having interviewed several thousand such individuals working in more than 400 agencies in the past 10 years) and documenting strengths and weaknesses of different service models. Most recently Dr. Huba has turned his attention to better ways of disseminating knowledge including organic mind mapping, data visualization, short videos, and social networks. Dr. Huba has served recently as the lead evaluator on The Measurement Group’s evaluations of projects serving older adults and on TMG cross-cutting evaluations.

Or you could say the following about me.

Heck the picture above was taken for a “professionally written and photographed” report for a big foundation. This is the only hour of my life I looked like that and I used the photo from 2003 until 2011 when I retired. What you see is not what you got. On the other hand, I do look a lot like that egg cartoon above. Always have, although in the old days I had hair that came down to the middle of my back and a beard that covered the shirt collar.