I think the legal right is established by HIPAA — the issue is then format. The discussion of this post on THCB acknowledges that providers will have to crawl before they walk and walk before they run — so downloading computable data won’t happen for everyone right away. And Meaningful Use will presumably drive what providers will need to do in this regard. The trick, I think, is coming up with solutions that are easy for providers to implement and then incentivizing them to adopt them sooner rather than later through MU.

Vince and Sherry,

I’ve always been unclear whether it’s a question of some data are harder to share than others or just that the process of exporting the data in a standard format and keeping them in sync is hard. I’ve been impressed by how easily my Keas account downloaded my Google Health data and gets updated whenever there’s a change at Google. If only my provider could do the same with Google. Maybe if my data in Google were more voluminous or complex the task would be harder and there would be a need for prioritizing fields. I’m curious what people think.

What I would love to see is something akin to how I exchange contact information with other smart phone users. I simply pick which fields I want to share and tap the phone to send it to them. The patient is the hub.

BTW – This direct from provider to patient to provider exchange of healthcare data isn’t meant to replace the large complex systems that occur within hospitals but is more akin to the direct provider to patient conversations that happen now (ie verbally).

It’s not possible to change the system overnight so that 100% of patient data is available 100% of the time…

So how do we begin to prioritize? Once you understand the opportunity for patient driven disruptive innovation, how do you break it down?
* what subsets of data provide the most value?
* what subsets of data will be most easily available electronically?
* what subsets of data will be most useful in engaging/motivating patients?
* etc.

At this point the questions become more obvious than the answers.

Several other countries (e.g, UK, Sweden, Denmark, Singapore) have developed “Summary Care Records” or similar as a first step in providing patients with electronic data. UK rollout has been problematic but seems to be going well in other countries. There are lessons to learn here.

I couldn’t agree more about an open API. Encouraging innovation is the way to go. Last week I got my first demo of EPIC’s “Lucy” chart integrator, which allows importing data from other systems as well as from multiple EPICs. Huzzah!

Part of me is starting to think that personal health data is so essential to someone’s health that there ought to be a legal responsibility NOT to hold it captive, but to make it available to anyone else the patient (& proxies) want. Any thoughts on that?

I think the kinds of portals that places like Group Health are terrific and I’m pretty sure there’s research or at least market data that suggests that people really enjoy the tight integration with their providers so they can take advantage of transactional services, email contacts, etc.

Where the portals fall short (at least for now), in my opinion, is in the ability to customize or add value to them through third-party apps. The tools people need to translate medical record data into something actionable are highly personal and highly varied. For example, I wouldn’t expect Group Health to offer translation engines that support 100+ languages, but if the data were released into something like HealthVault, then 100+ translators could emerge in the marketplace a la the iPhone app experience. Perhaps the path is to encourage Epic and other EMR/portal vendors to open up APIs for 3rd party development?

That is exactly what I think people need (and want). The raw data approach, I assume, is for exporting the data to some other software somewhere on the Internet, just because their own provider doesn’t have a proper Patient Portal.
I just think that every provider should have such portal, instead of forcing people to manipulate raw data. That was the point I was trying to make.

Steve.. – the ask is very simple.. If you have or implement an EMR give your patients real time access to their lab and imagining results, medications, orders after visits summaries etc, at the same time that providers get it.. Remember 1 in 4 docs use the same system and this is built into it.

Margalit Gur-Arie you give patients both the raw data as well as links or educational material so that they don’t call their daughters up with every little aberration in their results. Places like kaiser with millions of patients have demonstrated how to do this. Take a look at this demo of the patient portal at GHC for an example
http://www.ghc.org/public/cddemo/member/MyGHTour.jhtml;jsessionid=QG4LUCSHRFJOTJCISQ3SHPQ of what we have been doing for over five years now

It is great that so many people who are new to health IT are becoming interested. Our real challenge is getting the success stories out there and building on them. We aren’t asking for something new but what millions of people already get from their providers.

Due to an apparent email hiccup, I only now got email notification of your 4/29 comment. Apologies – I remember sitting near you a year ago this month on my first-ever trip to DC for HIT policy. (What a ride THIS has been.)

Re a specific ask: I’m happy to learn more but at present I don’t think I know enough to give educated advice.

Having said that, here’s an uninformed draft:

First define “comply.” There’s no point shoveling data at people who don’t want it.

Second, we’d need to flesh out exactly how much people are supposed to get. Pete Schmidt of Parkinsons Foundation has been talking about 40GB of genome data, and I’m even more certain not everyone wants that. But – billing data in human readable form? Lab data? Visit notes? Scan images (my personal favorite), but in full original res? etc.

Third, if we want to track compliance reliably, we could consider a 100% automated approach: the request *comes in* through a tracking system. Web, or SMS (“text GimmeData to AF4Q”), or 800 number? Need to work it out, including how someone would reliably identify themselves…that SMS example was pro forma of course.

I suggest SMS because of Pew’s data saying the digital divide disappears when you include smartphones.

This is one of those “don’t let perfection be the enemy of progress” things. I suspect significant behavioral change among providers will result from knowing requests are being forwarded by someone who’s tracking them, so they really need to get it in gear.

Then we need to work out how to confirm that the pt got what they wanted.

Forgive me if this isn’t at all the direction you’re asking about. Try again here, or drop me a note.

btw, somehow I only recently learned of Aligning Forces for Quality. I’m on a panel at the 5/13 annual meeting and I’m thrilled to learn that Boston’s getting on board.

I have the excellent 29 page progress report AF4Q recently published but I can’t find it on the site – if you have a URL I’m sure many here would like it.

“For more along these lines, follow Adriana Lukas here, where (among other things), she has MINT, which stands for My Information Not Theirs.”

I can hear it now: “Are you in MINT condition?” Love it!

Yes, I agree, data should be free and I actually would take it one step further and suggest that the Medical Record is the patient’s Property and should be treated as such. Legally.

I’ll be sure to tell the lady to make an appointment… :-)

As someone who stared at a few of those screens a few years ago, then asked OTHER people (savvy relatives) to interpret, I know what you mean.

I can’t speak for others, but for my own part, I’m not saying I’ll parse that stuff myself. I’m saying I’m sick & tired of the slow rate of development of useful patient-level tools inside the establishment, so I want the data to be accessible by people who can do smart stuff with it faster than has been happening.

Sorta like my friend Dorron’s EKG graphs above. I’m certain the raw data would mean zippo to me; and in fact the data apparently doesn’t convey anything to the docs who look at it. But his sneaky analysis (whatever it is) finds something that the raw data alone doesn’t show.

IOW, yeah, it’s not nearly enough. BUT IT’S A FRICKIN REQUIRED FIRST STEP, I assert. Without it, no innovation.

Complete Blood Count (CBC) with differential
Test Results Result Units Reference Interval
White Blood Count 1.5 L x 103/mm3 5.0-10.0
Red Blood Count 3.50 L x 106/mm3 4.1-5.3
Hemoglobin 10.8 L g/dL 12.0-18.0
Hematocrit 31.1 L % 37.0-52.0
Platelets 302 x 103/mm3 150-400
Polys (neutrophils) 23 L % 45-76
Lymphs 68 H % 17-44
Monocytes 7 % 3-10
Eos 2 % 0-4
Basos 0.6 % 0.2
Polys (absolute) .34 L x 103/mm3 1.8-7.8
Lymphs (absolute) 1.0 x 103/mm3 0.7-4.5
Monocytes (absolute) 0.1 x 103/mm3 0.1-1.0
Eos (absolute) 0.1 x 103/mm3 0.0-0.4
Basos (absolute) 0.0 x 103/mm3 0.0-0.2

What is a 74 year old lady in Joplin, MO supposed to do now?

P.S. – I support complete access to data, completely :-), but it’s not nearly enough…..

(BTW – I have an individual health insurance policy at a cost of $640 a month so I really do pay for it)

Thanks for a very thoughtful post. I’m a firm believer that it’s an important and potentially disruptive (in the best sense) step to liberate people’s data from the systems that hold it in. I’d be interested in hearing your thoughts on how to operationalize “gimme my damn data!” What’s the very specific ask you could give every healthcare organization that would enable you to track how many organizations, representing how many people, had complied.

I continue to feel this recognition is central to the paradigm shift away from mere incremental tinkering within a dysfunctional system; or industry gestalt populated by an interlocking series of business models collectively orchestrating ‘institutionalized malpractice’ via performance optimization under existing incentives.

Continued kudos for this series of posts!

When we implented this system at Group Health we gave the 580,000 members (patients) access to their EHR BEFORE the providers and as a result over 50% of all members use the EHR system (highest rates in the US) to get labs, set visit summary notes, make appts, communicate with their doctors and even write to their own charts (via email).

Over 30% of all visits are now being done via email and telephone encounters.. The challenge is how do we duplicate this model for providers who aren’t on salary? Perhaps the primary care medical home model is one option in which providers are paid to care for patients vs for encounters or procedures.

I included a link to a demo of the system in the website link.

If we asked every Epic provider to simply open up the API (yes it requies support to sign people up) to patients. overnight we would have 25% of all patients with access to their medical records.. That is a tipping point.

Mark, thanks for your good words. You captured the thesis of our article in a couple of sentences. Agree — no small task, but immensely rewarding.

One caution: the data deluge offers tremendous opportunity, but with the danger of expensive false positives. Retrospective analysis offers evidence of correlation only. Reviewing the data will only tell us the things that happen together, not why they happen or how to prevent them. To truly advance our understanding, we will need to develop an understanding of these correlations and test them to understand causal relationships.

This takes us to the revolution in the science of medicine we now find ourselves in the middle of: the genetic/molecular medicine revolution. Cellular mechanisms of disease are often a function of molecular biology, and we are increasingly finding that diseases we classify as one are merely the phenotypic manifestation of a family of pathologies.

Just as increasingly complex computer systems are now progressively more accessible to regular people, a pill designed through an understanding of molecular medicine that cures one patient’s cancer may be no better than a placebo for another. A respected neurologist sent me today the results of a patient’s genetic screening that was unintelligible to any but an expert geneticist.

Are we designing medical data systems for yesterday’s medicine? Gene therapy has already generated successes. Molecular medicine can cure some cancers. How many EMR systems can store a genome? How many EMR systems can trigger alerts from that genome? How can we teach patients to understand these issues? What will patients do with their data when that data includes a genome? When their physicians’ recommendations are derived from that genome?