Comments on: Wanted: Quickstart Guide for Personal Health Platform

By: 1samadams

1samadams — Mon, 02 Nov 2009 18:12:39 +0000

Wouldn’t let me respond to your reply below, I’ll respond here –

Typically, the hold it needs to be issued to the vendor\business manager who’s timeboxed a project without really gathering all the fiddly bits that make a project work. It’s like building a house without a blueprint – oy! I find myself in the unenviable position as the technologist going Hold Up to the business. Stop, Drop and Roll…

There MIGHT be something along the lines of what you are looking for from a UI perspective based on work that MS has done in the UK:

Check out:

http://www.mscui.net/

Especially: http://www.mscui.net/Introduction/Introduction.aspx

By: Taylor Walsh

Taylor Walsh — Mon, 02 Nov 2009 17:44:50 +0000

Sam, that makes perfect sense from your perspective and work objectives and that set of rocks up on the hill above you.

We have to do a lot more than to include patient perspective. Unfortunately, there is no patient-interest-centric community of which I am aware that exists to stand up and say “hold it” to the dev teams. Somebody needs to do a GUI spec for the PHRs of the future. An MPUI (Medical Patient UI … ?)

One concern is that more and more responsibility for personal health information is being placed into the hands of consumers, and involving different entities — like their employers (behavior-centric wellness) — and creating more external repositories for their health info.

I guess one word springs to mind for your work plan: “hooks.”

By: 1samadams

1samadams — Mon, 02 Nov 2009 14:18:37 +0000

Who’s telling you it’ll never happen? And how are they justifying it? It’s nonsense, nothing’s more trivial in the 21st century than bar codes.

By: 1samadams

1samadams — Mon, 02 Nov 2009 14:17:52 +0000

Great question and it’s one I’ve been asking myself of the business – realize I am in a software development team in an IS team of a large multifacility hospital system. To say that this is new to them is an understatement

I’ve asked if we’re building a patient portal FOR patients or FOR the health system – there’s a different set of priorities and deliverables. While the system chews on that question, I’m standing up the infrastructure necessary to support the common ground between the two – and there’s significant work effort there given the fragmentation of HIT systems.

At some point we need to include a patient perspective – how that’s going to happen remains to be determined and is more of a cultural challenge than anything else.

I’ve got a couple of aces up my sleeve (zoomerang) that’ll be better than the vacuum I would otherwise be looking at – but realize that’s something that I’m evangelizing myself – Sisyphean to say the least.

Consumers should drive the UX, should drive the requirements on what they need – and should be prepared in this case to get recruited as part of a larger effort to hold the industry accountable to standardizing or creating real, meaningful interop standards.

Hope that answers your question/?

By: Bill Cast, M.D.

Bill Cast, M.D. — Sun, 01 Nov 2009 18:29:28 +0000

Scott: I’ll see if our tech support at http://www.nomoreclipboard.com can dig out the usage statistics for barcode-FAX. I can tell you that it is not unusual in our home region (NE Indiana) because 65% of physicians have an EMR and 95% of docs, clinics, hospitals, labs use the HIE managed by http://www.mieweb.com. Paradoxically, they don’t need to use the bar code as much because their physicians are more likely to use the HIE. Features of our PHR, NoMoreClipboard, are meant to be stopgaps to allow “no doctor to be left behind” while he/she is on paper. We hope that the need for FAXing forms, even on the physicians’ own forms (a service we provide) is necessary only until HIE use, portals with PHR, and physician/hospital portals reduce that need. wcast@nomoreclipboard.com

By: Taylor Walsh

Taylor Walsh — Sun, 01 Nov 2009 17:22:23 +0000

Sam, what role do consumers play in your construction project? Who represents their (our) interests in the design and implementation?

By: Scott Kozicki

Scott Kozicki — Sat, 31 Oct 2009 18:22:03 +0000

Dr. Cast, how many people use the bar coded cover sheet to get their records into your PHR? I’m curious because I suggest this a thousand times a day and am always rebuffed that “it will never happen”. Surely you have some successful case studies.

By: Scott Kozicki

Scott Kozicki — Sat, 31 Oct 2009 18:20:59 +0000

Taylor, I would say that the metaphor is apt and shows an enlightening path. The Internet “succeeded” because there was a mechanism where anyone could suggest an idea (“a protocol to send electronic mail”), peers could review the idea (“this stinks! try again!”), and if enough people thought it was a good idea, it would get adopted (RFC 821). That’s what has brought us what we know today. Dozens of protocols and systems that together have delivered a fairly cohesive (albeit imperfect) platform which pretty much all global thought, communication, and commerce now rides upon.

There is no such equivalent for our health.

By: Bill Cast, M.D.

Bill Cast, M.D. — Sat, 31 Oct 2009 15:39:50 +0000

Sorry to be late with this comment, John, and also late with condolences for your unfortunate series of misadventures.
As to a practical solution for handling PHI, allow me these self-serving comments—self-serving because of http://www.nomoreclipboard.com (NMC), but warranted until a more perfect day for health care IT.
If one uses NMC for PHR, the option is given to create a bar-coded sheet and carry it or send it to a clinic or physician or ER. When the PHI desired (always takes human oversight unless it is to be a data dump) is identified, it is a simple matter to put it on the FAX machine with the bar-coded sheet and send it to your account at NMC where it will be in your in-box. From that point, one files it in a virtual cabinet.
Yes, it is imperfect especially in that a perfect solution for single lab values with accompanying, universally accepted “normals,” does not yet exist. And it is imperfect in that a reasoned summary, with diagnostic and prospective conclusions is not generated. But, the data is there and the important records are there—available anywhere one can access the Internet.
Until hospital IT is more than document management and until physicians have at least skeletal portals capable of interoperability, this is utilitarian.
Hope you are healing well. Bill

By: Sam Adams

Sam Adams — Tue, 27 Oct 2009 17:42:50 +0000

I’ve got a slew of comments, going to be hard to be concise.

First, respectfully, you’re barking up the red herring. Google Health, HealthVault are the platforms that PHR’s are built on – the data comes from various different EMR’s – and there’s a slew of them. Almost every one of those, with rare exceptions, have any desire to entertain anything resembling data portability – why should they? It’s profit out of their bottom line.

The truth of the matter is that creating a CCD or a CCR or even Google’s version (CCR-G – why Google why?) is TRIVIAL.

Synching or storing or doing a drop off pick up (DOPU) with HealthVault is TRIVIAL.

Getting the data from one, or more, EMR’s or clinical systems – and you’re talking the wild west. Never mind what the HL7 “standard” might say, you’ve got “Z” segments galore every which way from Sunday and poor to non-existent discipline around data integrity, much less sanity.

It’s no wonder all you can get is paper!

Second, respectfully, the government has little to no clue of what needs to be done here, if they did, HealthCare Reform would be both more expansive and also tighter scoped than the rambling villiage idiot it’s become.

The ONLY way you’re going to bring about change is going to be through an alliance of patients, clinicians and healthcare providing organizations to push the vendor’s into a common, acceptable format and make CCR’s & CCD’s come out of the box, instead of having to pay an obscene amount for an “interface” – if that’s even an option.

I can speak to this firsthand because this is exactly one of the projects that I’ve kicked off here. Given a requirements to synch or DOPU data into Healthvault, for example, first I have to have ONE realiable system of record to pull it from.

At least 60% of the work effort is going to be on creating that operational data platform that I can then leverage, be it for HealthVault or Google Health or some other entity that can accept CCR’s or CCD’s. The work effort for CCR”s & CCD’s? Around .5%. HealthVault or Google Health, around 4%, but only because I’ve got to build some sort of rules-driven prototype to get the data flowing.

I’m more than happy to admit I’m myopic since by background is as a computing professional – however – no amount of effort is going to move this forward until you can unfeter and make your data portable.

This is an industry problem that needs to be owned and solved by the industry, not vendors and certainly not the boobs in government.

My own sestertii.