Empowering elderly with HIT tools

Hi this is Dave deBronkart! I’m not known on the internet as “E-Patient Dave”. The E stands for empowered, engaged, equipped, enabled and I’m the chair emeritus and one of the co-founders of the society for participatory medicine whose logo you can see on the screen here. In 2007, nearly 10 years ago, I discovered I was almost dead from stage 4 kidney cancer and based on advice from my doctor, Doctor Danny Sands who is the co-author of the book you can see here, “Let Patients Help.” He’s a pioneer of the E-Patient movement back in the 1990s and I got information from the internet that today my oncologist says help save my life.

And so we are among the leaders of the E-Patient movement worldwide. And I want to talk to you here today about the subject of Geriatrics because truly compared to when I was a child, when I was growing up, Geriatrics, the care of elder people, is not what it used to be. Being 65, I’m 66 years old myself as I speak this, is no longer the “feebled, declining age that we thought it was and it changes. What we need to do as we approach either our own aging or caring for other elders. Fortunately, the internet helps us be aware of what our options are.

You can find me on the internet by the name “E-Patient Dave,” just search anywhere and you’ll find me. I’d be happy to connect. Just do me a favor and say how you found me. Now, I presented this talk originally at the nursing informatics conference in Geneva switzerland and it pointed out that Simone de Beauvior had published the world changing book “The Coming of Age” but in fact its French title, I can’t pronounce it very well, but it was “La Vieillesse,” which just means “Old Age”. And…she was…she seemed very fatalistic about it. Now this was almost a half century ago, hopeless about aging. Here’s what she wrote in this book.

“It’s far better not to think about it too much but to live a fairly committed, fairly justified life so that one may go on in the same path even when all illusions have vanished and one’s zeal for life has died away.” Basically live your life and be happy with it, so that even when you’re out of time, you’ll be content. Well, a lot has changed in the 46 years since she said that. A lot has changed in what’s possible. Health care has improved, a lot has improved. In fact, today technology can even change your philosophy as you’ll be seeing. First of all, if you live long enough, and I’ve experienced this. If you’ve lived long enough, the future changes.

Here’s an example. This was my friend Jay Parkinson, who I went to college with and here he is at a baseball game in philadelphia with his daughter. Men in his family have never lived as long as he’s lived. When he sent me this photo, he said that he was having a pacemaker put in his heart and the reason he was alive to have a pacemaker put in, is because twice in the past 10 years, medicine saved him from dying. The way men used to always die and this is happening to lots of people, men in his family particularly. This is happening to lots of people.

I almost died when I was 56 years old from kidney cancer, but I survived and here I am giving this talk today. Here is the future. When Jay and I were born, we were both born in 1950. This is a graphic from the pew research project from their book “Next America,” and it applies all around the world. When we were born in 1950, this is the shape of the population data. Every stripe is 5 years of age. The brown lines the dark brown lines represent baby boomers at the end of World War 2 and you can see that in those days with every growing five years after you were 40 years old or even 35 years old.

More and more people were dying and the population was getting smaller. Only a small part of the population was 65 years and older. Well now when they published this in 2015, here’s what that looked like. And people say the population pyramid is becoming a population rectangle. And you can see the baby boomers, most of us are still alive, and 34 years from now, when I turn 100 years old, you can see that in addition to the population getting wider, it has gotten much older as well. Truly unprecedented population profile. And if you look at the top bar there, it shows that 5% of the population will be 85 years old.

Now, that means the future is not so hopeless when you’re 60,70, and 80 years old. Technology will help. Here’s a blog post that I found in 2013, more than 3 years ago and the surgeon saw the statistics saying that two thirds of all people who have ever been age 65 in the world are alive today. Now I just wrote it as half of everyone who’s ever been alive today, but that’s a…nobody’s ever lived in a world with this future. You and I are living a condition of humanity that has never existed and we have evidence for this. So the question, if you’re learning, thinking about the future is are you ready for this new world? New resources are becoming available.

This is an excellent podcast that just started in the past year from a friend of mine, Dr. Lesley Kernisan, “better health while aging.” It’s available anywhere that there’s an internet connection. And what I like about Dr. Kernisan is that she makes all the most complicated subjects clear and simple it’s just the kind of doctor she is. She is a geriatrician herself. It even starts with the definition. She says, “In every podcast, Geriatrics is the art and science of modifying medicine so that it worked better for older people and their families. So have a look, I’ve seen several of those podcasts. I’m not that old myself but I’ve already seen several that have changed how I think about my own health.

So here is a good question. How can we empower patients and families to improve their health and care? Of any age? Well, there is a definition of empowerment that’s very useful here. Increasing the capacity of individuals or groups to make choices about what they want. Those are my words added, not their’s. And then to transform those choices into actions and outcomes. You can see looking at this, this takes the general concept of empowerment and makes it something where we can use in engineering approach, really if we want to. So we want to increase people’s capacity so anything we do that increases capacity will be empowering, specifically the capacity to make choices, to think about well what do I want?

What’s important to me? When we help people think about that it’s empowering. And then once they thought about that, anything we do that helps them take action will be empowering. And anything that blocks them from taking action will be disempowering. So now we take the whole idea of empowerment, which is kind of vague, and turn it into something that is ready for solutions. My doctor, Dr. Sands, co-author of my book, expresses it this way, “knowledge is power. When you know more you are more able to take powerful, effective, action. This famous quote from Sir Francis Bacon. So, Information is empowering. We can also see that to withhold information is disempowering.

So now we can look at it as what do we do to get our hands on useful information.