Could data make you live longer?

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e-Patient Dave deBronkart

Aug 11, 2016 - reading time 7 mins


By e-Patient Dave deBronkart

Co-chair, Society for Participatory Medicine


After beating stage IV kidney cancer in 2007, Dave has become one of the world’s leading advocates for patient engagement. He works as a blogger, health policy adviser and international keynote speaker and is also the co-founder and current co-chair of the Society for Participatory Medicine.

By e-Patient Dave deBronkartClick here to read less

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If it might, count me in. You and I are at the start of an unprecedented era: it’s likely that every one of us will live longer than people expected when we were kids. The book ‘The Next America’ analyzed census data and said in 2050 nearly 5% of us will be 85+.

Woman Looking At Health Monitoring App On Smartphone

We’ll be explorers in a new world: we’ll be aging in unprecedented circumstances, where “the edge of the earth” keeps moving farther away, as longevity increases … so we’re going to need new maps and a new kind of compass. How else can you navigate an unprecedented space?

Those maps and that compass are data.

  • The map is reports of what other pioneers have seen so far
  • My current status is the GPS that says where I am in that space
  • The compass is the often-changing best current advice on how to get further into that future, along routes I prefer … routes that honor my priorities, my personal health values.

You can’t do it without data.

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Success at any task depends on information

I make a living speaking at health conferences, so I’ve heard thousands of discussions about why healthcare falls short, including the ways patients don’t carry out instructions good doctors have given them. They call it “compliance,” or nicer people say “adherence.” But hardly anyone takes responsibility for what other industries call usability: Is it feasible for the patient to do the tasks we give them?

Do they know when to do them? Is it easy to tell?

Do they know how, with certainty? Or is it confusing?

Are they physically able?

Can they tell when it’s been done right?

Can they tell that it’s working?

For all of these, my experience in industry – and in healthcare, as a patient – says data can help.

“Make it easy to do the right thing”

Every successful innovation makes it easier to do something right. Websites today are a hundred times easier than ten years ago; in other industries if it’s not easy to do the right thing, customers walk away. But too often if it’s hard to do it right, medicine unwittingly blames the victim.

Data can help.

1. What’s my status?
This is as true in health as it is in driving: you can’t prevent a problem that’s hidden in a blind spot. Data about my status helps me know if attention’s needed – my weight, blood pressure or hemoglobin A1C – and helps me stay out of trouble.

Can that help me live longer? You bet. Eric Topol’s The Patient Will See You Now and Joe Kvedar’s The Internet of Healthy Things talk at great length about how patients enabled with information can do things that in the past required doctors. (This won’t put doctors out of work – the population surge guarantees that.)

2. Do I need to act?

Is my status out of range? My memory’s terrible, so I need to look things up constantly. Apps that alert me can help – but it has to be my range, not a generic one. That can vary, and often depends on my other conditions … it has to be data driven, or the guidance will be pitched toward the non-existent average.

3. Can I tell when it’s time to act?

When I first left the hospital during my cancer, I got an amazing schedule grid showing when to take each of my many medications daily, to try to survive. The schedule itself was confusing enough, but then to be told we had to remember the varying times without fail, or things could go wrong… well, how many alarm clocks do you own??

When data like that is liberated from hospital computers and we all have good apps, we will get automatically notified. If we have a computer or device it can beep and pop up our instructions. If we don’t have apps, the phone can ring. (These systems exist today.) Sick people will be relieved of the burden of remembering when it’s time to act.

That makes life easier, which helps us get rest and prevents further worsening. It’s a virtuous cycle.

4. Can I tell whether I’m doing it right?

If I have any say in it, those pop-up notifications will show pictures of what I’m supposed to take now. (If you’ve ever managed an elder’s pillbox you know exactly what I mean.) And I’ll be able to click on a pill image, if I forget, to remember what it’s for and which doc prescribed it.

Why not? The data exists, and it can help me do the right thing: data can help solve the “compliance” problem.

5. Am I sticking to the routine? Is it easy to know?

We’re talking about staying healthy, too, not just treating the sick. Fitness wristbands? I was skeptical, secretly thought they were okay for “those people,” those runner types. At first, like many, I thought they were for show: “Look how athletic I am!” Then I got diagnosed with pre-diabetes, and suddenly I was motivated.

When I got into the Diabetes Prevention Program (DPP) they told me whatever I’m doing for activity, however little it might be, just do more of it. And I’m here to testify: step counters make it easy (much easier) to do the right thing! The data may be inconsistent from model to model, not as precise as a medical device. But it’s enough to help me change my behavior, with a flick of the wrist: if I glance at it and see my step count’s way low, I now remember to go out and do something.

It’s not just activity. To help with diet (which the DPP is gentle about, not rigid), I used a food counter app that scans the bar code of whatever I’m eating. Yeah, my phone connects to data about food products, and it’s helped me lose weight. Forty pounds.

6. Is my care team on the same page? Does everyone have my status right?

In Let Patients Help: A Patient Engagement Handbook I note that nobody can perform to the top of their potential if they don’t have the information. As the Future Health Index report shows, too often care isn’t coordinated: patients have to repeat the same information. Not only does this waste scarce time during the visit, it risks forgetting something important.

The solution, of course, is data.

Please remember that we’re talking about real people here – people who will, surely one day, include your mother or child. Disaster nearly struck my family: as I wrote in Power to the People on the Innovation Matters blog, my own mother was rescued a few years ago when the data about her thyroid condition was wrong in the computer. (It was not sent electronically from the hospital to rehab – they copied it by hand. Copied wrong.)

Can correct data help you live longer? You bet it can. That’s my mom we’re talking about. I do not want a premature funeral for that woman. This matters.

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As we live longer, mistakes can be more costly.

As I entered the AARP years and my parents aged, I’ve learned more about longevity and the final decline. So often it starts with a condition or accident we just can’t bounce back from the way we would have – and so often, such insults can be avoided by managing life more carefully.

I don’t know about you, but I’ll be thrilled at anything that helps me achieve another decade with my wife, my daughter, my granddaughter. So I am motivated – to prevent those preventable mistakes. Data can help.

The era of plausible responsibility

I want to note a conceptual change that’s enabled by better data.

The concept of compliance assumes the doctor knows what you should do, and if you don’t, you’re the problem. I say if it’s hard to do the right thing, the burden is misplaced, and it just doesn’t work to put responsibility on the stressed person.

When data makes it easier for me to know my status, responsibility becomes plausible. When apps make it easier for me to take action at the right time, responsibility is plausible. When connected health means all my providers and my family have the same information – and can correct it if it’s wrong – then we will have a team that achieves what’s possible.

Yes, we can live longer if we have the facts. I wouldn’t say it can make me live longer – I still need to do the work – but I know first-hand, it can help me live longer. Count me in.

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