Have You Ever Heard A Song About Personalized Medicine? Here Is A Scientist Singing A Song.

Source: Uniavisen

Just coming off of the holidays over two months ago, the image above is still fresh in our minds.  Of course, the next major holiday is probably not winter but sunshine -- Summer.  The thoughts of beaches and sun blazing down on the water while surfing, swimming, or just straight chillin' on the beach.  My point is that when I mention a scientist singing a song, the above picture is a common place to project that image.  But what about in a rock band?  Or a music band in general?  Not common right?  Wrong.



You would be surprised at the amount of scientists who also are associated with a musical instrument or an art project/hobby.  Scientists are notorious for engaging in artistry of some sorts -- whether that be from playing in a band or painting a picture to designing the next generation of skin care make up.  Art plays a prominent (although scientists may not like to admit this fact) role in science.



With all of this being said, the Director of the National Institutes of Health recently was interviewed in an article titled "For Scientists About to Rock (We Salute You)" to discuss his next love to science -- which is making music:

Science and music are closely connected. Says Dr. Francis Collins, director of the National Institutes of Health (NIH): “Whether you’re working with another person or a whole team of people who have different skills, different dreams and different aspirations and you put them together, you create something magical. Science does that and so does music.”

Collins, a physician-geneticist, is noted for his landmark discoveries of disease genes and his leadership of the international Human Genome Project, which culminated in April 2003 with the completion of a finished sequence of the human DNA instruction book. He served as director of the National Human Genome Research Institute at the NIH from 1993 to 2008. He was appointed the 16th NIH director by President Barack Obama and was confirmed by the Senate in 2009.

When Collins came to the NIH, he was concerned that his passion for music would take a backseat to science. He soon learned about The Directors, a band consisting of former NIH senior staff. The name changed to the Affordable Rock ‘n’ Roll Act (ARRA) and everyone at the NIH is welcome to join.

The name’s not political. It stems from being affordable, “since we don’t get paid for performing,” Collins said.

To read the remainder of the article - click here.  Dr. Francis Collins is a multifaceted kind of man.  He is engaged in all sorts of activities ranging from playing in music bands to practicing christianity.  Yes, Dr. Collins is a christian. This comes as a great surprise to most scientists who meet or interact with Dr. Collins.  Typically, the thought is at odds with conventional science, but Dr. Collins states not so obvious.



The spectrum of scientists is wide and all encompassing.  In fact, there are more religious people than the non-scientist might expect in science.  Although, most do not speak out in favor of religion for fear of professional disqualification.  Yes, that would be highly illegal, but the reality is that is the truth.  Great scientists such as Dr. Collins manage to live in both realms without any difficulty or controversy.  Anyone can view Dr. Collins 'CV' -- Curriculum Vitae here.



Back to his true passion of singing.  Below is a song written by Dr. Francis Collins about 'Personalized Medicine':

For those who do not have the bandwidth to listen to the song, I show the transcript below for you to read:

00:05 I put these here just in case well Susan

00:13 can be blamed for this because she

00:17 suggested that you all were of the sort

00:19 that might actually adjust to a little

00:22 bit of foolish singing at the end and

00:24 that's the only kind of singing I do so

00:27 so uh this is a song about the future

00:31 personalized medicine remember I said

00:37 that thousand dollar genome is coming

00:39 pretty soon and that means each of you

00:42 each of you will have the chance maybe

00:44 in the next five or six years to have

00:46 your entire genome read out all six

00:49 billion of those letters of your DNA

00:51 code and then you'll have to figure out

00:54 what it means and that's a bit of a

00:57 challenge a few people have already gone

00:59 through this experience and they've been

01:01 a little flummoxed

01:02 trying to make sense of the data well we

01:05 will all be so this is a song that you

01:08 could imagine yourself having just

01:10 received your genome basically you're

01:14 sitting in front of your computer you're

01:16 sort of scrolling through the pages and

01:19 what do you see a lot of AC GMT in

01:23 various orders and trying to figure out

01:25 exactly what does this mean so this is

01:29 your song and I need a little help on

01:31 one part of this song because it goes up

01:35 to a high C sharp that's a little

01:38 outside my normal range you will you

01:41 will feel it coming and and you will

01:45 help me I sure hope anyway you'll know

01:48 what you have to do

01:50 so here's the song of looking at your

01:52 genome as I walk along the pages in all

02:00 six billion places upon my computer

02:05 screen am I built for strong endurance

02:13 or loss of life insurance am i a mere

02:19 machine

02:23 I'm a walking through the genes don't

02:27 know what all this means

02:30 again the meeting be behind that gmt and

02:36 i want to help me out

02:42 why why why why why you've got an a I've

02:48 got a see there what does that say

02:54 amazing DNA at EDD

03:11 so I'm glad to know I've got some of

03:15 what Crick and Watson found and brought

03:20 them say use your own imagination

03:28 despite variation we're really much the

03:33 same

03:34 I will walk in through the genes don't

03:40 know what all this means

03:42 Oh what can the meaning be behind that

03:47 G&T; I wonder why why why why why why

03:58 you've got a G I've got a see there what

04:03 does that say

04:06 amazing DNA a dee dee dee dee da dee dee

04:12 DNA a DDD DNA

04:37 you

Wow!  As I just stated, the spectrum of scientists is wide and all encompassing.  All types of people in life do science.  In addition, all types of people make up scientists.  If you take a look at Dr. Collins long and successful career, you will notice the extent (a large amount) he has pushed the edge of research.  Currently, he is the director of the National Institutes of Health.



The song above is about a current enormous project called "All of Us" by the National Institutes of Health.  A few months ago, I wrote a blog post about the unveiling of the enormous program which aims to push the medical field toward precision medicine.  Precision medicine stands to hone in on individual treatments by teasing out individual differences in treatment/diagnosis, disease pathology.  Why do people have different forms of cancer?  What is attributed to these differences in medical diagnosis?  What is the difference between two patients with a seemingly similar form of cancer?  Is the cancer the same or different?  How do the treatment of both patients differ?



Medicine is moving along a trajectory which is exciting and will reveal new medicine in the future.  We need as many different types of people engaging in science, technology, engineering, and mathematics (STEM) fields to help further science.  On the patient side, the "All of Us" trial needs as many volunteers as possible to expand the diversity in disease treatment and diagnosis.  This will require different people (ethnic, gender, cultural, etc.) participating as volunteers along with a highly diverse group of scientists processing the trial and gathering the data.  This is a time of celebrating the differences among us, not just as scientists but as human beings.  

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Does your brain move throughout the day?

Source: YouTube

Over the last few years, the news has been preoccupied by a number of important stories.  One of which is the phenomenon known at CTE - ccc - also known as 'Brain Slosh'.  Researchers have uncovered that the brain actually moves in a regular pattern which is aligned with the heart beat.



In a recent blog post by the Director of the National Institutes of Health, Dr. Francis Collins highlights the research (imaging) behind the video shown below:

Wow.  Up until now, the discussion surrounding the movement of the brain has been centered around the controversial condition in NFL football players (and other football player of all ages too) known as "Chronic Traumatic Encephalopathy" -- due to repeated 'hits' to the head during the game. In the near future, I will write more about this subject and the research which is funded by the National Football League.  With this taken center stage, developments in imaging have been emerging as a result.  This is an example of such a benefit of conducting research into other questions surrounding the brain.  After watching the video above, the natural question is the following:



How is the imaging done for the video above?



The research behind this imaging is described as follows in the blog post:

In the video, a traditional series of brain scans captured using standard MRI (left) make the brain appear mostly motionless. But a second series of scans captured using the new technique (right) shows the brain pulsating with each and every heartbeat.

As described in the journal Magnetic Resonance in Medicine, the team started by measuring the pulse of a healthy person. They synchronized the pulse with MRI images of the person’s brain, stitching the scans together to create a sequential video. Their new MRI approach then relies on a special algorithm developed by another group to magnify the subtle changes.

The new report demonstrates application of the technique to MRI scans of a healthy person and someone with structural abnormalities of the skull and the brain’s cerebellum known as Chiari malformations. Remarkably, those amplified MRI images revealed obvious differences in brain motion. The researchers also showed in another investigation which parts of the brain move the most.

The researchers hope this new approach will help physicians capture potentially important changes in the brains of people with conditions such as hydrocephalus (“water on the brain”), which influence brain pressure and motion. One thing is already clear: we’ve never seen the brain quite like this before.

Amazing.  The work described above will undoubtedly improve the entire field of medical imaging as a whole.  Each unique question asked by researchers holds the potential to add to the field of imaging in a number of unexpected ways.  Which is why scientist have difficulty with under funded science as a whole.  Not to say that certain projects could not be tailored down to save money.



Any time a research pursuit is followed, a flow of information will result.  Whether that information is useful or not is unknown in some cases.  Research into imaging techniques will have a direct and observable effect on patient care.  Unlike other types of research, shedding more light on the happenings in the region of the skull (i.e. the brain) is greatly needed and under funded.  Which means that the opportunity for improvement along with the potential to unveil vast amounts of information is huge and worthy of pursuing.  The future is exciting to say the least.







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Source: Indiana University

How does the medical community collect medical knowledge?  Through research efforts at University hospitals?  Through research efforts at private medical facilities?  Do these different entities share information freely among one another?  The answer to the last question is "no" unfortunately.  Although, groundbreaking results are shared through publishing in medical journals which disseminate the knowledge to the world at large.  What am I getting at?



There is a lack of 'collective information' on the present state of 'medicine' -- which might sound rather strange at first pass to the reader (you).  If a person stops to think about how information is gathered to advance science (in general) then the problem might just present itself in a better light with regard to the lack of dissemination of knowledge within the medical community.  Even reading that there is a lack of knowledge in the medical community might raise alarm in readers minds -- which is good -- considering the proposed change by the National Institutes of Health.  First, lets look at drug discovery briefly.

How are drugs discovered?

As I wrote about in a previous post, the process of drug discovery begins at the university stage. Basic research begins at the university with funding provided by the National Science Foundation along with the National Institutes of Health -- two large government funding agencies.  Of course, there are a whole host of other possible funding sources, but the top two are undoubtedly the NSF and the NIH.  During this research and discovery period, scientists are looking for basic targets that are associated with diseases or other biological functions.



If a discovery is made, then that target -- site on a protein or other biological surface might be passed onto the biotech or chemical industry to develop drugs (pharmaceutical) or chemicals (pesticides -- chemical industry) -- to name a couple of routes.  The take home message is that research done at this stage is purely discovery and not necessarily money driven.  Unlike the research which is conducted in industry settings which must yield profits or be discontinued.



The cost of such research in industry is large.  Why?  Because, as I stated in a previous blog -- the total cost of bringing a drug to market (i.e. pharmacy shelf) is around 20 billion dollars -- yes, "$20,000,000,000.00"-- which is very expensive.  The development of a drug target into an actual treatment is costly from a research standpoint.  Not to mention, the legal paperwork, the marketing, and other regulatory paperwork that is involved in the process.  Even with assistance from government funding agencies like the NIH and the NSF, the cost of bringing a drug to the pharmacy counter is costly.



As a result of this cost, information (data) regarding the drug trials (clinical trials) is secretive and held by the drug manufacturer.  Even though the drug was ultimately produced with money from the tax-payers, the information is proprietary.  Most drug companies tend to keep such information very close and secretive.  This results in the information on patient variability or patient participation that is kept secret and not for government or public researchers to access.  Such information would be extremely beneficial to public researchers and should be made public for mining or searching.



Overall, patient information in research settings and medical practice settings are kept secret from the world.  The results/information is very important and should be available since the information shows the differences in patient variability.  Differences in treatment and differences in outcomes.  What if that information was made available to incorporate into public research?  How much better off would the medical community be?

Personalized Medicine

There is a tremendous amount of variation that is present throughout the human population.  Each of us have similarities but many differences too.  The practice of medicine has relied on the sharing of information throughout the world.  A great deal of that sharing has been either through participation at conferences or through the dissemination of knowledge/results in medical/science journals which publish research results.  Additionally, a small amount of advances have been carried by the media.  The media could do a large amount more but unfortunately, research results do not always attract viewer attention compared to salacious scandals involving politicians and corporations.



What if we paid more attention to the results of medicine?


How can the public get involved in the effort to do so?


Especially, given the lack of understanding in participation?



After all, patients hear about clinical trials which are underway through their respective physicians or by learning about the possibility of participation via the internet.  Of course, that takes a tremendous amount of effort (not really) on each human part.  The main obstacle toward achieving greater solutions in medicine is sharing medical files.



At present, each of us go to the doctor to be examined and treated for an ailment (problem).  A medical file (medical folder) is created at the doctor's office with the medical history and the medical issue along with the recommended treatment (as prescribed by the physician) him/herself.  That medical information is not 'shared' with researchers around the world.  Which is a large issue.  Why? The motivation for change can be stated as the following:


Imagine all of the medical files that are kept at all of the different doctors offices around the world which are not being shared.  In order to share them, each patient needs to sign a 'release form' to whichever physician or agency he/she would like to share their medical history with.  This means that there is a tremendous (huge, enormous) amount of medical history about the citizens of the world that is kept 'private' and not accessible to the research community.  That information could be extremely useful to understand the different types (of variability) of diseases which exist in the human population.  Until that medical history is shared, then medicine will rely on the few cases which are shared (which is very little compared to the human population).



What if the ability to share each of our personal medical information was possible?  What if the government had access to a million medical files?  Imagine the amount of information that could be obtained?  The opportunity just arose with the unveiling of the initiative called "All of Us" by the National Institutes of Health.  Here is the mission statement (brief) on the webpage linked:

The All of Us Research Program is a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.

Below is a video which serves to motivate the reason why the "All Of Us" project is important:

See?  A testimonial video is shown below of the personal impact that 'personalized medicine' has had on a silicon valley investor - Eric Dishman:

Here is another description from Indian University shown below:

Imagine if researchers had the enormous amount of medical files that are reported to be possible by the "All of Us" initiative by the National Institutes of Health?  All of the patient information which displays the variability (differences) between 1 million patients.  Plus, the similarities in disease type and treatment would be known too.  Which would help researchers understand to a greater extent what works and what does not for a given disease (or type of disease).  Everyone wins when we understand the differences between various citizens walking the Earth.



Conclusion...



The photo at the beginning of the blog post shows two horizontal lines indicating two different paths of treatment.  In the first path (the top) is a single pill which is given to four different patients.  There is a large red 'X' indicating that precision medicine does not aim to continue to give 'one treatment' to everyone and expect a 'good outcome.'  Whereas in the second (lower) horizontal treatment path, the same 'pill' is shown to be blocked en route to the patient by a strand of DNA.  Further, the original path is split into four different treatment paths for four different patients.   This indicates that the treatment which was previously thought to treat four different people is insufficient.  Upon accessing greater knowledge regarding variability in the patient population, the one treatment path turns into four different treatment paths for four different people.  As indicated a patient might get the same pill, whereas, another might get half of the same pill.  Yet another (a third) patient might get a totally different treatment.  We do not know without understanding the differences which exist between us.


Are you convinced yet?


What can you do to participate?


Sign up to share your medical history and participate in the well-being of the world by upgrading the medical community's knowledge by shedding light on the exact differences between patient populations (gender, race, ethnicity, etc.).  By understanding the differences among us, we arrive more quickly at more precise and effective treatments for each of us.



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