What happens when patients see their doctors’ notes?

I want to mention also something that I believe everyone should be involved in to help manage their care. There is a software method, this is not a product, it’s a software method called open notes. In which I, I am one of the patients who has this or any patient in a health care system that does this, can see every word that my doctors have written. Now in our case, I go to the patient portal, you know the website where I scheduled my appointments and everything and I click the buttons to access my records. And it’s written in doctor’s vocabulary but I get to look. So here is how important this can be.

First of all, most medical records contain mistakes, I’ll get back to that in a moment and I can find those mistakes and help fix them, so that the next doctor doesn’t get the wrong idea. But also if I forget what did the doctor tell me to do, I can go online and look so I become a better patient without bothering the doctor. And everytime I do that, it doesn’t cost anybody anything. So there you have, you know doctor’s often like to talk about the word “compliance.” Well, there you have the “me being more compliant, following the plan better.” I like to think of it as a plan that we developed together rather than the doctor’s orders.

Following the plan better all at no increased cost. Now, a lot of people, a lot of physicians had been very skeptical saying patients would not want to look at that information and it would confuse them or worry them. The evidence has shown that the vast majority, and you can look this up, search open notes in any medical library or just on the internet and you’ll find all the research and you can share it with others. That the vast majority of patients want to see. They do not get frightened and good things happen. In particular, at the end…in the first paper that was published about this a few years ago.

Look at this, 99% of patients who had looked at their notes wanted to continue. Is that amazing? If you ever looked at any medical research you have never seen a 99% number. Now what about the doctors? Well, 17-26% of doctors said that they were going to stop. The number changes because the study was done at three different hospitals at the same time, but when those doctors saw all the other benefits, not a single one disconnected. So here’s the reality, a hundred percent of doctors wanted to continue and 99% of patients “are there any questions about whether you can try this.

Now since then, there have been some cases of a couple of doctors withdrawing but we’re now at the point in the U.S., the U.S. alone where 7 million patients are doing this and some number of thousand of doctors. And do we like it. Well,

consider this: more than 85% of patients, said now “Availability of their notes would influence their choice of doctors and hospitals and even health plans. ‘Cause once people have seen it, the vast majority want to get involved. So here’s another thing, where the future is changing due to technology. So let me ask do you know what’s in your family’s records? Here’s a picture of me when I was a baby with my mother. This women is very important to me. Last weekend, we just…the family got together for her 87th birthday party.

And here’s one of my sisters who, one of the women who it’s very common in many families around the world that there would be a woman who manages most people’s care. And this is one of my two sisters who helped take care of mom. And

my mother had a hip replacement a few years ago. The surgery was good and..but when she was transferred to another facility for rehab, somehow her thyroid condition came across backwards. It indicated, in the chart, the opposite of what she actually had and…so this is not just a risk to the patient, it means the best doctor in the world could have given her the wrong medicine and caused harm. Now there’s no way every doctor can know every detail of every patient. It’s the family who’s able to do that.

So this is why it’s so important, if you are a family member for you to be involved and if you are a clinician, to welcome it, when the family wants to be involved. See, empowered families can help if they have the information. After all, who has the most at stake? WIth the accuracy completeness and availability of the medical record. Notice the title of the book is not “Doctors are dangerous” or anything like that. It’s just let patients help. We perform better when We’re informed better. Now, I have something humorous here as we come to a close.

This is a quote from a famous physician a long time ago showing the old view and this was quoted in the British medical journal, a couple of years ago. It was titled “Why do patients need information” and the doctor’s quote was “your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags. He should get only just so much is as good for him.” So there..well that was said in 1871 and it’s not the way modern medicine is practiced, but you need to understand that there’s still culture changes hard.

Well a lot has changed since then so please help us have access to as much information as we want and to return to where we started at the beginning of this talk. I imagine today, Simone de Beauvoir would have a different view. She would encourage empowerment because in addition to her book on Coming of Age, she’s best known for writing the famous feminist book “The Second Sex.” And in that book look what she said, “There is no justification for present existence other than it’s expansion into an indefinitely open future. And that’s how I feel about life at age 66, I do not feel like I’ve run out of time and it’s time for me to wind down.

I have one of these wristbands. The prices of these are coming down. It counts my footsteps, it measures how much sleep I get. Some people say “Well what are you going to do with that?” Well for me, i’ve lost 20 Kilograms of weight using just this and various apps on my phone since I was diagnosed as pre-diabetic and I did all of that without taking up any more time from my doctor. Just by being better able to monitor what I’m happening what I’m doing. Well you know, behavior changes not easy.

Nobody says it is, but it has made much easier with good devices and as the price of all things electronic goes down, and internet access increases, it’s my hope that we’ll have that for every citizen of the entire world. Geriatrics, the future of aging is not what it used to be. 65 no longer means you’re feeble and I hope everyone of you will learn what you can and spread the word about the new reality. Thanks so much for your attention!