Doc Searls likes the idea behind HealthVault, if not the name. Along with Joe Andrieu, he’s asking reasonable questions and making reasonable comments. Although I did interview Peter Neupert about the project, I don’t have any other privileged insight into how it works. But here’s what I’ve discovered by poking around.
Comment: I’m not sure how this is going to work for non-obsessed civilians. Which is to say, filling it with useful data takes work, a lot of it manual.
So far, I’ve only been able to manually inject data by way of peer applications. I’ve tried two: USWellness and PureWellness. Automatic injection can happen in a couple of ways. If you own a connectable home health device, like a blood pressure monitor, you can squirt its data into the vault. Or, if your doctor or hospital uses a cooperating clinical application, it can squirt data into the vault. I’ve yet to experience either of these modes, or talk to anyone who has.
Question: How can I get data out again?
A: For each category of data, there’s an Export Data link that produces a CSV (comma-separated variable) file. So for example, I just recorded a single blood pressure entry, and here’s the data:
“4e028a05-8cfb-4d94-9a8e-c708efa75ceb”,”2cf7cc76-d880-4c33-8ae9-b70b39e3d5ab”,””,””,”2007-10-09″,”Blood Pressure Measurement”,”ca3c57f4-f4c1-4e15-be67-0a3caf5414ed”,””,””,”2007-10-09 00:00:00″, “120 mm Hg”,”120″,”80 mm Hg”,”80″,””,””
That’s the interactive way of getting data out, and it comes out in a form that a regular person could use — for example, in a spreadsheet. For programmers, there are a whole bunch of information types defined — vital signs, weight, glucose, many more — and each inherits a GetItemXml method from a parent class.
Question: Is there an API that will allow me, at my discretion, to share the data with parties of my own choice?
Yes. For both USWellness and PureWellness, I had to grant access to my vault. The permissions they requested, and I gave them, are:
USWellness: View, update, create and delete Aerobic Exercise Session, Blood Glucose Measurement, Blood Pressure Measurement or Vital Signs.
PureWellness: View, update and create Aerobic Exercise Session, Blood Glucose Measurement, Blood Pressure Measurement, Daily Dietary Intake or Weight Measurement.
In these cases, I used these applications to inject data into the vault. That is, I created a blood pressure record in USWellness, and some weight records in PureWellness, and then asked those applications to synch the data to my vault. Later I revoked their access, and the data was retained — in both places, actually, which leads to the next question:
Question: What if any of my data, or data about my data, is locked out of my control? That is, what cannot be copied out or removed by me?
It looks like I can delete everything in my vault. The deletions, however, are retained in the change log which is accessible only to the Custodian — i.e., the family’s health data manager. I don’t know whether the change log can be purged short of cancelling the account.
A related question is: What happens in the peer system when you delete a HealthVault record? In the examples I’ve tried, it sticks around. In other words, after deleting my PureWellness-originated weight records from HealthVault, they were still present in PureWellness. I’d have to delete them there too if I wanted a complete purge.
Question: Is this a system that only works with Microsoft-approved “partners” of one kind or another?
The Go Live document sez: “You must work with the HealthVault Business Development team to author a partnership agreement. You can kick off this process by emailing HVBD@microsoft.com.”
Question: Does the system welcome the development of standard mechanisms by which my doctor and other health care providers can put data into my “vault”?
Yes. It’s a platform with an SDK and a developer’s guide and all that kinda stuff.
Comment: I would like my future diagnoses and treatments to be copied, by my permission, from my provider into the “vault”. I would also like be able to share that data, at my discretion, with other providers should the need arise.
That’s the whole idea.
Comment: Far as I know these systems are not yet in place, or fully in place. Whether they are or not, I would like them to be built on open standards and to use open data types, rather than ones controlled by Microsoft or any other company.
It’s brand new, and there are as yet only a few early partners. Regarding standards and formats, Peter Neupert says in the interview:
We have used data standards, where we could find them, that were generally accepted, and we’ve deployed many of those. The one we’re using for the discharge summary is called CCR, which isn’t quite an official standard yet, and is a fairly loosely described XML format, but will be useful enough, and better than not having anything. So much has gotten stuck in trying to put all the semantic meaning into the structure, whereas having the information is really valuable in and of itself. So we’ve been very pragmatic in taking standards where we could find them, and saying, it’s going to be valuable for us to implement them. And we have an extensible environment so it’s easy for us to add as we go along, and we know we’ve got a lot more to add.
If HealthVault is yet another system for creating dependencies that trap individuals into coercive relationships, it will fail. If it’s a system that brings a new and better way for patients to relate to health care providers — without trapping the patient inside a closed system — that would be cool.
None of us will know what it’s really going to be like until we’ve interacted, over time, with participating providers and (in some cases) connected devices. But in my view the goal is laudable, the architecture is correct, and coolness is attainable.