Each Monday we take time to discuss an illness or injury that is often timely. We usually discuss the diagnosis, treatment options and outcomes. Each of these discussions are based on decades of treatments and studies where we have learned the best way to diagnose and treat a condition. The information we have captured over the years is placed in books , on line, in journals and presented at seminars so that we can advance the treatment of the specific illness.  

We have essentially learned case by case, individual by individual. Medicine is trying to change that now. Why does colon cancer hit someone in their 40’s but for most people much later in life. How can we predict which medication is the best to treat your depression instead of trying multiple drugs until we find the right one months later. This has been difficult because we have not been able to take the successes of other individuals similar to you and your response to a treatment, or the age at which you were diagnosed as the data was written on paper, not searchable and around the world. We have not had the opportunity to allow our personal health journey to help others.

The “All of Us” campaign kicked off a little over a year ago. The concept for this is really quite simple, if we can collect health information from a million individuals, and look at their genetic makeup, their medical history and track it over time, we will have the data to impact the health of generations to come. Their mission is very simple, they want to speed up health research and medical breakthroughs. We complain all the time, why did this take so long, shouldn’t we have known about this sooner? This study will help us develop information that will allow for individualized prevention and treatment. This is called Precision Medicine, this is healthcare that is based on you as an individual. The goal is to be able to tell people the best way to stay healthy, the appropriate medications for their conditions that will lead to the best outcomes, the most appropriate time to begin screening based on this data. It is all tailored to the individual based on big data that identifies what is actually best.

We have discussed studies  where a conclusion is made on the treatment of a disease with 1,000 people. Think about how much more precise this could be if we had the data for 1,000,000 people. We may find that a specific sub group needs ½ the dose, or that Drug X will not work at all for a specific sub group. The saving of pain and suffering as well as financial cannot be overlooked. Think of this study solving better medications and dosing based on trends, better tests to identify conditions earlier, and better ways to encourage healthy habits

Now many of you are probably thinking, “Wait, you tell us that we should protect our medical information” That is not 100% true, we as medical professionals should and do protect your medical information. This study which comes out of the NIH, is not about you personally it is about you as a part of a large group. Your data in this study is completely protected. Identifiers are removed from the data, names, addresses and other identifying information is separate from the health information. They have very strict security standards and the data is encrypted.

The All of Us program is in full swing and anyone can join now and the process is quite simple. You can go on line to www.joinallofus.org, and read about the program and register. The registration involves consent as well as an online health survey. Participants are then asked to go to a partner center where some labs are collected and physical measurements are taken. In the future you will be asked to update your health and lifestyle information for continuous enrollment. At all times you will have access to your information. The study is approaching 200,000 participants, so we are still looking for many more

So why do this?  The goal is better health for ourselves as well as for generations to come. Generations before us helped us get to where we are now in much more painful and slow ways. The research in the past has allowed us to find out what medications we need for many conditions yet it was found in a much longer time frame and many did not get the benefit of what we are getting now. So, do we owe it to future generations? Are we paying it forward like others have for our benefit?  Will we minimize or eliminate the question, “why didn’t we know this sooner” or “why didn’t I know I am at higher risk and need to be screened earlier?’

This is a national study and we are lucky to have multiple sites in Chicago participating.  Northwestern Medicine, Rush, University of Chicago and U of I are all participating as collection sites. Each  has set up collection sites in the city and surrounding suburbs. The goal is to get many people with very diverse backgrounds. The number of people and the information will allow for researchers to see trends they could not see in the past because the numbers in a study were too small to show a trend. Now with this data, the researchers can take a coned down view and look for changes.

Here is an example, let’s say out of the 1 million individuals they hope to have in this study, 10,000 have colon cancer before the age of 50. The study would then allow researchers to look at the genetic makeup of those individuals, look at their demographics, lifestyle, occupation, other health issues, This may lead to a new timing recommendation for individuals to screen based on other information. It may lead to a simple test that identifies colon cancer sooner, it may identify a specific food that appears to trigger colon cancer, it may impact how we treat colon cancer with surgery or not, with chemo that is less toxic yet effective.  I can assure you we all know of someone who wishes they had that information now, and many of you are probably saying, I wish we had an easier test to take that would easily identify colon cancer. Things like this are not possible unless we get a large number of data points to identify trends. The cases we think are rare, may not be as we look at large numbers of people across the country and probably have a reason and with data we can identify this and impact the lives of generations to come.

A few words you never want to hear from a doctor are  “I have never seen this before” a study like this takes all of those cases and actually puts them together so now the doctors can say “I have never seen this before, but I know how to treat it with the best medication for you personally, and here is what we need to do to screen your family”  That is the power of this. The “one off” cases where we are stumped, add to delayed diagnosis, often inappropriate treatment and in many cases pain and suffering that may be needless in the future.

This is a way for each of us personally to help the generations that follow us as well as a way to say Thank you to those who participated in the past for us.

Please consider doing your part and signing up for the “All of Us” study

Organ Donation Awareness Month

April is Organ Donation Awareness month and an opportunity for another thing you can do that perhaps will help others in the future.

Important to understand the need and impact for organ donation. There are many myths out there and hopefully with some clarity we will have others sign up to be a donor.

Let’s clear some myths

1. Doctors will not stop trying to save your life if they know you are an organ donor. Our first priority is always to treat and save the patient we are caring for. Organ donation is not even discussed until after death is declared.
2. I can’t be an organ donor because I am too old or too sick. Each donor’s medical condition is evaluated at the time of death to see what organs may be viable for donation.
3. Rich people or celebrities get organs faster because of their status. This is not true, the data base looks at severity of illness as well has close the match is before determining where an organ will be used. Income, race or social status are not taken into account for allocation process
4. Your family is not charged for the cost associated with the recovery and processing of organs and tissue.
5. An open casket desire is not impacted by organ donation. The team that procures the organs treat each donor with respect and dignity, this allows for an open casket wake if desired.

Now some facts

1.  There are over 115,000 individuals in the US awaiting a transplant
2. Another name is added to the list every 10 minutes
3. We have 20 individuals die each day waiting for a transplant
4. A single donor can save up to the 8 lives thru organ donation, and enhance the lives of many more with tissue donation
5. We have done over 700,000 transplants in the US in the past 30 years
6. The cornea is the most common transplant, giving the recipient the ability to see again.
7. We can donate heart, lungs, kidneys, liver, pancreas, intestines. Also cornea, skin, heart valves, tendons, ligaments and bones.
8. 145,000,000 individuals in the US are registered as organ donors
9. 36,500 transplants were performed in 2018 a record high for the 6th year in a row
10. We also did 85,000 cornea transplants
11. More than a million tissue transplants (skin, tendons, bones, bone marrow)
12. The number of live donors is increasing, last year over 40% of donors were live donors

It is simple to be an Organ Donor in Illinois, just go on line to Donate Life Illinois and register, it takes a few minutes. When you get your new driver’s license they will ask you and it will show up on your license as well. One big thing to do is to share with your family and loved ones that you are a donor and that you want to be a donor if the situation arises. This sets. The expectations and takes the stress off of those who may be put in the position of making a decision for you. It also increases awareness and allows you an opportunity to share with others the importance of being a donor