Wouldn't it be interesting if ...

"Wouldn't it be interesting if ..." the tweet starts.  And continues: "... there were a standards development organization founded/ran by patients?"

There is an idea in here that is absolutely right, and an implementation that isn't ideal.

Let's start with what is right.  What is right is that patients are the ultimate consumer of what we do in Health IT, and they absolutely need to be at the table and well represented.

What is wrong is simply that standards are about consensus among all stakeholders.  Any standards process that gives one body more representation or control than another is broken, even if it does so with the best of intentions.

I've been involved with standards efforts where one stakeholder group had more power than others (even today this is still true in S&I Framework -- just ask yourself who sets the agenda), and can tell you that it can be challenging.  Been there, done that (on both sides).  Certainly it is "comfortable" to be with the stakeholder group in power, but it doesn't lead to the best outcomes for all.

The harder thing, but probably more useful to do is to become influential in an existing community. Been there, done that. If you can manage it, it results in more success.  Rather than attempting to compete on dramatically unequal footing, what you wind up doing is co-opting the existing community on your own terms.  You have to start softer.  You aren't trying to change the world all at once (see reboot or re-boot).  Just trying to get the direction shifted a little bit, then a bit more.  Until eventually, well, you get the idea.

This is happening to some degree inside HL7.  There are people who are seeking change, and making it happen (e.g., Mobile Health, Quality, Free IP and other initiatives), bringing in other stakeholders to help.  The balance of power is shifting.  Directions are changing.

The biggest challenge for patients in all of this is understanding how they/we can participate. Some are techno-geeky, like me, but with non-healthcare backgrounds (also how I started).  Others are non-techno geeky.  Others have a healthcare background.  And others, are simply just frustrated with the way things work today.

The biggest challenge for organizations wanting to engage patients is figuring out what it means to be a representative of that stakeholder group.  The usual classifications here don't necessarily work.  The minimal requirements for classification of stakeholders (according to section 2.3 of ANSI Essential Requirements) is:

1. Producer
2. User
3. General Interest

A fourth category that often shows up is "government", from the perspective of regulators or imposers of the standard. Producers and users (usually purchasers) often have an obvious financial stake that makes it possible for them to obtain funding to participate in the development of standards.  Government too has a way to fund its participation.  But patients most often fall into the "general interest" category, and from that perspective, often don't have a funding source for participation.

More often than not, other non-profit organizations devoted to representation of patients or consumers will often show up, and do have funding.  But these organizations aren't the same as the stakeholders (and in fact, there are SOME I would NOT have represent me, because I don't agree with their perspective).

I like the idea of patient scholarships, but it isn't clear how that would work, or what the proper governance is.  

The final challenge is how to address the fact that we can all fit ourselves (as I did in this post on Patient-Centric Health IT) into the "General Interest" category.  While each of us can fit into that category, we have different perspectives based on our involvements as producers or users or other categories as well.  And we all balance those differently.  General interest in this list is almost an "other" category, as in Not Otherwise Specified.

What may be important are the various "declarations" that a participant can make:

1. Do you spend money or resources to implement or conform to the standard?
2. Do you receive money or resources to implement or conform to the standard?
3. Are you in a position to require use of those standards in a particular market?

I find it difficult for many who would argue that they are representatives of patients who can say yes to either 1 or 2 as being strictly representative of the "patient" stakeholder group.

So, wouldn't it be interesting if, we were to find a way to enable patients more participation in the development of standards?  Certainly it would be.  But, I think the journey will possibly be more interesting than the destination.