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Health Data Outside the Doctor’s Office

Screen Shot 2014-12-02 at 7.01.42 AMHealth primarily happens outside the doctor’s office—playing out in the arenas where we live, learn, work and play. In fact, a minority of our overall health is the result of the health care we receive.  If we’re to have an accurate picture of health, we need more than what is currently captured in the electronic health record.

That’s why the U.S. Department of Health and Human Services (HHS) asked the distinguished JASON group to bring its considerable analytical power to bear on this problem: how to create a health information system that focuses on the health of individuals, not just the care they receive. JASON is an independent group of scientists and academics that has been advising the Federal government on matters of science and technology for over 50 years.

Why is it important to pursue this ambitious goal? There has been an explosion of data that could help with all kinds of decisions about health. Right now, though, we do not have the capability to capture and share that data with those who make decisions that impact health—including individuals, health care providers and communities.

The new report, called Data for Individual Health, builds upon the 2013 JASON report, A Robust Health Data Infrastructure.  It lays out recommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.

This report, done in partnership with the Agency for Healthcare Research and Quality (AHRQ) and the Office of the National Coordinator for Health Information Technology (ONC) with support from the Robert Wood Johnson Foundation, comes at a pivotal time: ONC is in the process of developing a federal health IT strategic plan and a shared, nationwide interoperability roadmap, which will ensure that information can be securely shared across an emerging health IT infrastructure.

Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health.

Initiatives like Blue Button and OpenNotes are already empowering patients and allowing them to take a more active role in their care. But giving individuals access to integrated streams of data from inside and outside the doctor’s office can increase the ways in which people engage directly in their own health and wellness.

Broadening data beyond the four walls of the doctors’ office will give health care professionals a more holistic view of their patient’s health. Sharing that data among members of the health care team will also lead to greater care coordination. Ensuring this data is used in meaningful ways will of course require training our health care workforce to a higher level of quantitative literacy.

Efforts now underway like County Health Rankings guide community leaders in setting priorities for improving health. With access to more data, communities can make faster, smarter decisions that support health—creating healthier homes, schools, workplaces and neighborhoods. For example, if a city wants to plan bike infrastructure, they could invest millions in conducting studies into where bike lanes should go, or they instead could quickly access information generated by bikers, such as Map My Ride or Strava, to see where people are actually riding.

While there are an enormous number of uses for the data that we can imagine and many more we cannot yet anticipate, it will be vitally important that we all make every effort to protect the privacy and security of these data. The report highlights numerous ways to protect the data in ways that benefit health and wellness, while also prompting accelerated innovation.

We’re excited by the potential to take this emerging data and turn it into useable information to build a Culture of Health—a nation where everyone has the opportunity to live longer, healthier lives.

We encourage everyone— consumers, providers, employers, purchasers, health IT developers and others—to take a look at the report and share your comments below. We look forward to hearing from you.

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Redi-DatalawyerdoctorNrf2 ActivatorcivisisusMatthew Holt Recent comment authors
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Redi-Data
Guest

It’s about capturing their attention requires accuracy, personalization and trust when it comes to healthcare professionals.
And if we have the real picture of health, precisely we need more than that we captured.

William Palmer MD
Guest
William Palmer MD

It’s illegal to sell organ donations in the US. It’s illegal to force labor. One has to get permission from the patient to use a blood or other body specimen for research or commercial purposes. And if discoveries or patents or other uses bring revenue to the users of such specimens then the patients get shares of this revenue. Why not make it illegal to use patient data without the patient’s permission and, if it is used for commercial purposes, patients receive a share of any revenue generated thereby? Allow patients to sell their records. If it is illegal to… Read more »

Mike Painter
Guest

William-thanks for the comment-you’re essentially making one of the core points the JASONs made. People need to either own or if the law doesn’t support that (yet) manage and control their data. That premise should be the foundation for any data architecture. Not sure where all the comments about giving data to the government came from. These reports highlight the same worries. In fact they’re describing an ecosystem with personal data control and encryption that looks a lot more like the Apple encryption that…wait for it…has the government so concerned. #ironiesabound #readthereport

lawyerdoctor
Guest

Trust the “government” with my ALL of my personal health data?

NO PROBLEM!! I’m sure they will take excellent care of it, and never lose it like Lois Lerner’s emails, or let it get out there on the web, or use it against me.

Mike Painter
Guest

Again…interesting…please read the report…

Nrf2 Activator
Guest

No more than words I can say, “This is really great.”

Mike Painter
Guest

Agree.Nrf2 Activator..

Mike Painter
Guest

ahem…have folks in this string actually read the report yet? Just sayin…

@BobbyGvegas
Guest

Safe to say that I have. http://tinyurl.com/mp9n63e

Mike Painter
Guest

Bobby-thanks. It was obvious from your comments that you had read them.

William Palmer MD
Guest
William Palmer MD

Big data is not always true data, (accurate, facts, reality…called the noumena in philosophy–what is actually out there in the objective world, not created by our subjective thoughts.)

If there is a low percentage of true data/total data could this be dangerous to our policy derived from that data? Or hazardous to our knowledge base?

If contributors to that big data realize that it is a large data project–eg giving census data–will they be less assidious is being accurate than if it were a small data project–eg becoming part of a clinical trial?

Granpappy Yokum
Guest
Granpappy Yokum

“If contributors to that big data realize that it is a large data project–eg giving census data–will they be less assidious is being accurate”

Just look at almost any EMR note . . .

Whatsen Williams
Guest
Whatsen Williams

It is the delusional thinking in this piece that has kept HIT from being useful to the patients, their doctors and nurses, and the researchers who are finding that Big Data is actually Flawed Data. Who is checking?

@BobbyGvegas
Guest

“The unilateral rejection of facts may be the ultimate metaphor and irony of the Information Age; the more official the source the less likely it is to be believed. Skepticism is as old as king and country. History itself has been aptly described as an argument un-ended. But there is a profound difference between revisionist history based on new evidence and evolving social mores and the rejection of facts. We are overwhelmed with data from every quarter, and our capacity to filter fact from fraud is limited. But the web never rests. In our digital world, all the accumulated knowledge… Read more »

Bob McNutt
Guest

Seems an interesting comment; isn’t this blog spurring us to think about unregulated versus regulated data? Is it spurring us to question supply side health care versus demand side health care? Questions must proceed data; good science only has a chance in experiments, not data sets.

@BobbyGvegas
Guest

“good science only has a chance in experiments, not data sets.”
___

That is fundamentally untrue. e.g.,

http://www.usc.edu/org/cosee-west/Jul_Aug2012/For%20the%20Web/General%20informaion%20on%20OOS/Obs_sci.pdf

Bob McNutt
Guest

Brilliant! Dr Hardin said it best. It is not the tragedy of the commons, per se. It is the tragedy of the unregulated commons. The unregulated commons has bred the pasture of data. My comments were meant to remind, as yours, that we must regulate our ideas. My regulation would go something like this; data be damned; balance sheets at EHR companies be damned; government health plans be damned. But, instead, patients, be honored, be informed, be cared for behind close doors in a relationship. Patients will ultimately regulate the commons; physicians and health systems will not.

@BobbyGvegas
Guest

“But, instead, patients, be honored, be informed”
___

By what?

“Data”?

Bob McNutt
Guest

This is an amazing post. Filled with ideas, ideology, beliefs and facts. This AM I was listening to a Mike and Mike discuss the college football ratings. A tweet came in from a sports journalist that went something like this: we have become slaves to metrics and data but not common sense. His problem was that teams that had been beaten by other teams were ahead of the victorious on the list. This struck me as related to this post. Dr Marcia Angell wrote a nice piece about the Harvard study that followed graduates to predict long life. The study… Read more »

Peter1
Guest
Peter1

Great post Bob. The purpose of data collection just seems to data collection. The king has no clothes.

Perry
Guest
Perry

Well said. I think the key is common sense.

@BobbyGvegas
Guest

Beyond matters of empirical epistemology: “…The tribes of the new pastures are engaged in bitter, often bloody conflict, even though they are all, in their different ways , moral peoples. They fight not because they are fundamentally selfish but because they have incompatible visions of what a moral society should be. These are not merely scholarly disagreements, although their scholars have those, too. Rather, each tribe’s philosophy is woven into its daily life. Each tribe has its own version of moral common sense. The tribes of the new pastures fight not because they are immoral but because they view life… Read more »

Mike Painter
Guest

Bob-thanks for the great comment. Of course the point of these reports is exactly the point you’re making. It’s not about collecting more data. In fact it’s not about collecting any data. It’s about recognizing that we are creating more and more data in our lives in and out of health care (who knew there’s life outside of health care?) the reports describe ways to organize the data…so people can..ask the right questions…make the data useful information to help us all make better decisions. Kind of like we can get to information on the Internet when we need it…

Maureen Coffey
Guest

“… health information system that focuses on the health of individuals, not just the care they receive …” – ambitious goal indeed. The problem with any of this is that it can easily lead to a big brother-like situation and make people avoid rather than embrace the sharing of their information. All it takes is some password and user account breaches (be it end users or medical staff accounts) that allow identifiable information to be read by unauthorized eyes to derail such efforts for a long, long time.

Whatsen Williams
Guest
Whatsen Williams

Hoping this will work better than the US efforts vs Ebola. Many suits who were inept at managing the threat to public health. They simply did not know what to do.

Doctor Mawrdough
Guest
Doctor Mawrdough

The US is spending excessively on HIT that has done little to nothing in improving outcomes. Besides, the garbage in data will create erroneous conclusions, no matter how BIG your data is.

I attended a conversation in which the stated cost of an EHR system was $250 million. That would buy many nurses and medications and food.

I suggest you cut out the illusions of pie in the sky revelations and cut the mustard as to what it will cost to wire the US medical care system…how many $ trillions? Get real, puleeeease.

Talos
Guest
Talos

Agree. Kaiser Permanente spent $4+ billion to install EPIC to cover 900,000 (approximately) in 2005. SImple math says that EMR installation to cover a current US population of 319 million (approx.) will cost more than $1.4 trillion. I know that one large EMR company is likely salivating about that number. The cost curve of the $2 trillion spent annually on healthcare would have to bend over 7% year-to-year to just cover the expense of installation of systems over 10 years ($140 billion). If anyone has data that shows that EMR installation has the possiblity of bending the cost curve 7%,… Read more »

civisisus
Guest
civisisus

Gee Matt, Vik sounds loaded most of the time, as most frothing crypto-libertarians do. Three sheets to the black helicopters wind….

He DOES make Al Lewis sound positively moderate, which is nice

civisisus
Guest
civisisus

Ugh, these dang message board features are forever mucked up. Anyway, Talos, ignore my snide reply about Vik K, and consider that the subject of this thread has almost nothing to do with wiring up EPIC coast to coast – perish THAT god-awful thought.

So you can put away your simple math, because it’s really inapplicable in this instance.

Mike Painter
Guest

applause!

anxiety
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