Dr. Kevin Most: Organ Donation Month- Transplants- Apple medical records
Transplants- Organ Donation Month- Donor Awareness
The first organ donation occurred in 1954 when a twin donated one of their kidneys to the other twin. Since then the advancement of transplants has sky rocketed. We are now able to transplant hearts, lungs, livers, kidneys, corneas, pancreas this list goes on. In fact the limiting step in the transplant world today is a lack of donors. Even today we have more than 120,000 individuals on waiting lists and unfortunately 20 individuals die each day while waiting for a transplant.
Each year we are doing more transplant surgeries, while the world of innovation and technology working on manmade organs, such as the kidney and pancreas we discussed a few weeks ago. Will technology replace the need for organ donations for transplants? Not in our lifetimes, and because of that we all need to be aware of the organ donation programs and how easy it is to sign up. Surveys have shown that 95% of adults support organ donation but unfortunately just over 50% have actually taken the time to sign up.
Sign up is very easy in Illinois, all you need is your driver’s license number, name and address. It is done on line at lifegoeson.com. It is important to understand the impact a donation can make. One donor can save up to eight lives, so the ,minimal amount of time it takes to sign up can make a huge impact.
There are many myths as well that may stop individuals from signing up. Let’s clear up a few.
I have a medical condition so I can’t donate- false in fact there are only a few medical conditions that would exclude an individual.
I am too old- there is no age limits on being a donor, the oldest living donor now is 93.
If I am in the hospital and they know I am an organ donor they won’t try as hard to save me- False and in the hospital the doctors will not know you are a donor.
I don’t want my family to have to pay for this – there is no cost to donors or their families.
Someone will take my organs and sell them- Federal law prohibits this.
Rich people get organs faster- there is a national computer system that does the matching based on many factors, including location and awaiting patients level of illness.
I have to die before I can be a donor- no in fact some of the great successes are with live donors providing kidneys to others.
Now let’s talk about a few local stories you may have seen.
In late February there was an amazing, well-orchestrated transplant story of live kidney donors that occurred right here in Chicago. We all may remember that police superintendent Eddie Johnson received a kidney from his son, that story got some get exposure. One story that did not get a lot of exposure was a 12 person kidney exchange that occurred here in February. Without getting into the specifics which may make you a bit dizzy, 6 individuals wanted to donate a kidney to a friend or loved one. Because the match did not work for the individual they wanted to donate to their kidney was donated to another who also had a live donor willing to donate but did not match. With the data base and information collected they were able to piece together 6 live donors and 6 recipients. The donor may not have actually given their kidney to the individual they wanted to, it was their donation that allowed the chain to come back and help their loved one. It is an amazing story where 6 individuals wanted to make an impact on a friend and essentially could not without because of a match issue still made this occur with a chain that started and impacted 6 others needing donors. Anyone of them could have stopped the chain and put them back to ground zero and no one would have gotten a kidney, but thru their absolute generosity the impact hit 6 individuals not just one.
One of the difficulties of organ donation was also highlighted here is Chicago recently, when a mother shared the story of watching her daughter die after being told she did not qualify to be on the transplant list. This story hits the impact of ethics on the transplant process. The brief story behind this is a 24 yo women who had liver damage due to alcohol use. She was kept off the list due to her continued use of alcohol. It has been a standard that in order for an alcoholic to be placed on the transplant list they must be sober for 6 months. The thought process was why would we give a liver to someone who is continuing to damage their liver, when we could give it to someone who has shown they have quit drinking.
The problem with that stand, is some patients do not have 6 months to live with acute liver failure. Because of that they are unable to even qualify. Some hospitals have come to realize that some of those candidates may actually do very well even without the time of sobriety. They have found that individuals who had no warning signs of the liver failure and have supportive social network around them actually do well if not better than some who have had 6 months of sobriety. A study from NEJM had Northwestern and University of Chicago change their policy so they would consider a small subset who have acute liver failure and are on a timeline that would not allow them to survive the six month sobriety requirement. Some of these patients with this condition will have a 70% chance of dying within the 6 month window regardless of what they do.
The goal continues to be to choose candidates who will be good stewards of the lifesaving organ they have been given. Not all patients with acute liver failure due to alcohol will qualify. Each hospital has a multidisciplinary team that looks at the individual, their history, their current health, their social network, their employment and motivation.
So take a minute and go online and sign up to be an organ donor, it is easy and you may make a difference in many people’s lives.
Apple advancing the concept of accessible medical records—
You have to think what a poor job healthcare has done with medical records, years ago doctors would keep all of your records on a small 3×5 card, all written with his own language. We then advanced to having you picking up paper copies of handwritten notes that no one could read, and you had to get them from 5 different sources. Now we have electronic medical records which in some cases are just paper records you can read as they are typed, but in many cases you have to go to 3-5 sites to get them all. Are you starting to see an opportunity here?
Medical information, safe care and cost of care are in everyone’s minds these days, how can it be safe if we are not all working with the same information.
A few new things happening as we look at patients health, the cost and their data. First many of you may have noted the news story last week about Apple and their new Health Records feature on their health app. It was a story in the Tribune last Friday. The concept is quite simple, your health data is to put it bluntly, yours. Gone are the days that we would hold back information on your personal health and keep it secret. Now many of you may be saying this is not news, that you have had “ My Chart” or some similar patient portal application for a while. What many people do not realize is that “My Chart” is essentially a local record of a single system and is quite limited. If you have seen doctors from a few hospitals or a few medical groups, chances are you have multiple physician portal accounts. The world we live in now where patients with chronic illnesses see multiple doctors often leads to poor communication and coordination.
This new Apple app will work to allow you to merge and collect your health data in a single site. Gone will be the days of carrying around paper records, copies of reports and medication lists. All you will need now is your phone. How many of you take a medication for blood pressure, cholesterol and diabetes? Do you know the names, the doses, the times to take? You think you had a tetanus shot a “few years back” but are unsure. You had a CT scan but don’t remember the results, the list can go on.
What Apple is doing is currently partnering with major health systems to allow a patient to identify where they have received care and allow all of the records to be put together in one place versus multiple fragmented applications that do not merge or on paper or CD’s. In Chicago, RUSH and University of Chicago are were recently added, and Northwestern will be join this group shortly. Apple has initially opened it up to 40 healthcare systems across the country with plans to expand. Under this plan if you received care at RUSH, U of C and Northwestern much of your data will be merged into a single site, the Apple health app, this is loaded on all iPhones. It is the application with the heart on it, currently you may be using it only to track your steps or other self-reported information.
So the next time you are in the ER you won’t have to look at a list of medications that you can’t read, may not have all your medications on or still have medications that another doctor has stopped. You may be saved the costs of expensive tests as the results of a recent test may be as close as your phone. This will increase the quality of care as well hopefully lower the overall cost of care.
High deductibles have lead us to a new world of consumerism in health care. This will only continue to expand as more individuals are taking the high deductible plan and assuming some of the risk that the employer used to hold. Don’t be surprised to see companies make that high deductible plan more attractive. Some argue that this plan will force people to make better decisions on their health, the other side says these plans only make people put off healthcare and thus do harm. The truth lies somewhere in the middle.
Let me give an example, you twist your knee and come in for an evaluation. The doctor does a great exam and tells you he thinks it is a simple strain and will get better with rest, ice and Advil. He is quite confident but tells you the only way to know for sure is to do a MRI. Now the ball is back in your court, if you had no financial restrictions, you may say let’s do the MRI. Now think about the high deductible individual, he may say he is fine with the rest, ice and Advil and will put off the MRI as long as he is not missing an opportunity to repair something that would need repair now. The cost difference between the 2 examples can be $ 2,500- 5,000 depending where you live.
So you can see why employers are starting to make high deductible plans attractive.