<RANT>
I'm afraid they are, though. Perhaps it's just my exhaustion, what between meaningful use posts, and HL7 balloting, and basically doing all the rest of the stuff I do in standards as a professional "volunteer".
Closed StandardsThese are the politically loaded phrases people are throwing around in recent discussions on the #ABBI project. Most of the time I can just ignore them, even though I find them alienating, but tonight for some reason, I just cracked. I bust my ass doing this work, because I love what I do, and because I really do believe I'm doing the right thing. It's always been about me, my family, my tribe, and my community, first, before I ever get to considerations of my employment, or the organization that I'm doing stuff for. And that's because if it isn't right for them, it isn't right. Period. I get tired and cranky, and right now, I'm probably right at the peak of cranky.
Vested Interests
Members only Club
Let's start with closed standards. Define please, what you mean by open standards. You might have even mentioned some organizations like W3C, or IETF. Well, here's what W3C, IETF, IEEE, the Internet Society and others think it means: http://open-stand.org/principles/
Note that free is NOT part of the definition. This stuff has to be paid for. Someone has to build the web site, answer the phones and t-con lines, schedule meetings, and all the rest of that stuff. That costs real money. Many SDOs charge for standards. Some charge for membership. Others charge for testing services. There has to be a business model. It's just like HIE. You cannot just build it for free and expect someone to fund it.
Reasonable is part of the definition, and some would argue that HL7's prices aren't reasonable, or aren't affordable for the little guy, or ... well, they can go on for quite some time about this. Fair enough. Have you looked at the costs to join W3C? More on that below.
If all you ever do is complain from the outside, YOU will never change the organization. Change comes from within. I've been working on change from within in every single one of the organizations that I've been working with from almost the very beginning (including every employer I'v ever worked for). None of them are perfect. All of them make mistakes.
If you want to stand on your soap-box and preach, fine, your audience is in the church, you might consider moving your soap-box inside it. Meanwhile, mine's already been there long enough to get on the board, and whispering into the ears of the people in charge. Which of us do you think will be more effective?
Vested interests? That's laughable. A vested interest is "a personal stake or involvement", especially with respect to financial gain. Few of us are in a position to give away our time and effort, and so ALL of us have vested interests. Go ahead. Declare my vested interests. But declare yours first.
Here are mine: I have vested interests in being able to use CCDA, and IHE XCA standards which I've already invested a great deal of time and effort in. And neither of those are going away anytime soon. One of my interests in the ABBI project is to be able to use the same work I ALREADY HAVE TO DO, for Meaningful Use, and reuse it again to support what I think patients want (and remember, I am one). In this, it would be awful nice to kill two birds with one stone.
At the same time, I ALSO want these content standards to be easier to use. I've worked on two separate projects Documents for Mobile Health in IHE (MHD), and FHIR in HL7, to simplify things. I think MHD is ready for use in the pull situation. HL7 is still working on FHIR, and so am I. I don't want to deal with yet another content standard that nobody can describe in real terms of anything other than what it isn't (HL7 CDA).
If you want to change something, it is much better to offer a suggestion of what to change it to, rather than to just say "I don't like that one". And, BTW a list of requirements for a new standard IS NOT a standard. It won't meet the project deadlines. If you want to work on the next generation XML or JSON content standards, I suggest you go work on the FHIR project with Grahame, Lloyd and others (including me). Because that's where it's happening. There will even be some testing going on in a couple of weeks (and I'll be tweeting out from that event).
Members only club. Well, I have to agree, every organization I've ever known is about its members, and I really don't think there's a reason any of them should ever apologize for it. This particular attack was basically against the principle that you should pay for a product. Frankly, I want all standards to be free, but I also want free gas, food and a house too. It is never free.
People cite W3C and OASIS as ideal models of free standards. But they aren't golden models for me. I cannot afford to be a member of either W3C or OASIS. I cannot vote on their standards, nor can I participate in governance. It would cost my employer more than three times what it spends on HL7 to become of member of W3C. If I personally were to join, it would be thrice what a consultant would paid to HL7. This is how they can manage to make their standards free, by charging big fees to to members. So, I cannot vote on those standards, nominate something to become a standard, or participate much in the development process, vote for committee chairs, or board members. All I get to do is use their standards for free. How's that for members-only?
Do me a favor, show some respect and save politically loaded vocabulary for some other meeting. We've got a ton work to do, and my daughters are counting on us, to make their data available.
</RANT>
Thanks. If you've gotten this far, thanks for listening. That's off my chest now. I can at least go back to address the issue of being tired. Cranky? We'll see what surprises tomorrow holds for me.
Keith
Well said. The ground work has been done. Direct and CCDA. Cn we move past step one please?
ReplyDeleteHL7 is fine for HIE, provider-to-provider, and provider-to-payer communication. For Blue Button however, the goal is to break from business as usual.
ReplyDeleteI understand the intent of the ABBI project is aimed at being something new and something very simple for people to manage their own data. I'm not sure what the answer is just yet, but I'm not of the option that CCDA is a good starting point. I say that because it is a overly-complex, closed standard and is the intellectual property of HL7. Its specification is not in the public domain.
I'd define an "open data standard" with the following meaning:
The standard is in the public domain. The specification, in its entirety, is free and public. There is no license or restriction to redistribute the standard's text in whole or in part. Any related schema, such as an XSD, is also open in the same way.
Nothing wrong with clubs with memberships. I used to have a gym membership. But some people want to go just go to the park instead. It wouldn't be very nice if the people from the gym all got together and tried to prevent folks from opening a park as an alternative. That's kind of what it sounds like when we are at the beginning of a new effort and the tone is "it must be CCDA and DIRECT". Having the audacity to suggest there can be a different way is not being disrespectful and does not make me a "Bastard" as you say.
I can see how open source standards groups can work with memberships, but their work products should be open using the definition I gave above. HL7 does not meet the definition. If HTTP was like Hl7, I'd have to join and pay a bunch of money just to know that 404 means "not found" and 200 means "OK". I'd agree W3C and OASIS might not be good models either. I'd offer GeoJSON, as a good example.
I do not work for a company with HL7-based solutions. My vested interest and/or personal mission is to lower the bar for developers, reduce complexity, and increase market competition. I believe this is the best thing for me and my family as a patient and for the American taxpayer.
I had to look up, "Illegitimi non carborundum". I must say I am not "bastard" and please don't drag my mother into this. Its unfortunate my opinion is getting you down. I'm one of a growing chorus of folks who are out to challenge the existing structure and opt for something new. I happen to think the current system is very broken. If it was so awesome, we wouldn't have a need for "meaningful use" in the first place. Alternatives are and will continue to emerge.
I am respectful of your opinion. Please respect my right to offer alternatives and constructive criticism. Its not because I'm a "Bastard", as you say, but it is because I believe it is the right thing to do.
Peace,
Alan Viars
@aviars
Alan,
DeleteMy intention was never to call you a bastard. I'm sorry. I should have considered my wording better, and offered you the same respect I requested.
Keith
I'll take up the rest of the discussion in a new post. I'm ready to move on beyond the rant.
Delete