Washington Post’s “Salon” Disaster and Health Care Reform

As a former citizen of the Washington Post newsroom, the recent disaster about the newspaper’s “salon” project is heartbreaking and embarrassing.

I won’t belabor the issues many others have so thoroughly covered, including today’s  “apology” by publisher Katharine Weymouth, which feels a bit short of fulsome. 

Instead I want to point out something that’s gotten lost in the media frenzy: That the topic of the first “salon” [sorry, I find I have to use quotes when referring to that] was to have been health care reform.

As an independent journalist [among other things] and participant in the “health 2.0″ movement, I find this particularly distressing.

The fact that Weymouth and her team identified health care reform as the first ripe target for a scheme to bring together “the powerful few”: CEOs/lobbyists, “Congressional and Administration officials” and Washington Post health care reporting and editorial staff” demonstrates the peril faced by the group with the biggest stake in health care reform.

I refer, of course, to patients.

Significantly, Weymouth did not invite to her “salon” anybody living with a chronic disease, or someone who lost her health insurance when she lost her job, or anyone who has declared bankruptcy under the burden of paying for a loved one’s brain surgery.

Now I suppose the patient community could have raised $25,000 to sponsor the event and buy a seat at the table. [We could have all chipped in for some nice clothes and a haircut, so our rep could fit right in.]

Imagine how the conversation would have been different if that patient advocate had co-sponsored the meeting of members of Congress and Administration officials, to say nothing of the top leaders in the Washington Post newsroom!

A fatuous fantasy, I know, laughable on its face.

But it illustrates how once again that–despite what appear to be sincere efforts to introduce patient-centric healthcare reform by some members of Congress and the Administration–the very people who are the ultimate beneficiaries or victims of healthcare reform are offered no seat a the table.

Not even Katharine Weymouth’s dinner table.

Three weeks ago, a number of other “stakeholders” in healthcare reform created something called a Declaration of Health Data Rights, a statement that spells out what rights patients have to the electronic information about their care to be gathered as part of any healthcare reform plan. [Interest revealed: I signed onto it and agreed to blog on it as part of a publicity campaign.]

As I’ve argued before, things like the Declaration are necessary because patients don’t really have access to the process when the difficult, ethically complicated, legally messy and often sneaky and malicious work of making healthcare law takes place.

There are many reasons to be disgusted with the Washington Post’s salon misadventure.

The fact that it demonstrated a reflexive Washington habit of gathering an exclusive cabal of the most powerful and moneyed interests to discuss such an important issue may be the most disgusting of all.

I’ve said it before and I’ll say it again: Patients are going to have to force themselves into this debate against the resistance and indifference of the Washington establishment. Patients cannot afford the luxury of deference and e-mail.

And so I repeat the rallying cry: Patients: Aux barricades!

Declaration of Health Data Rights: Aux Barricades!

And so it has come to this: A declaration of human rights about . . .health information technology.

A group of thinkers, leaders and potentates in the patient-centric wing of the Health 2.0 movement, gathered under the banner HealthDataRights.org, has hammered out the following declaration:

Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:

• Have the right to their own health data.
• Have the right to know the source of each health data element.
• Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost.  If data exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
• Have the right to share their health data with others as they see fit.

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

[Interest declared: I know a lot of these folks from the Health2.0 world, and was approached to endorse the statement and to blog about it at 9:00 p.m. on the 22nd day of June in the year of our lord 2009. I agreed because, well, I agree.]

This is important and timely stuff.

At a moment when vast amounts of federal cash are being spent on Health IT [HIT] in service of health care reform, it’s important to have the interests of patients plainly and publicly declared.

Why?

The most visible and active “stakeholders” in discussions about HIT so far have been–stop me if you’ve heard this one before–commercially self-interested players who may not [or, to be fair, may] have patient rights regarding what happens with the “I” part of HIT top-of-mind.

These HIT stakeholders include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

They all have the usual “access” to the the HIT policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

And so yes, it’s essential to ensure patients are represented in the midst of all this–and to declare patients have access to, knowledge about and [some] control over their personal health information.

And, if necessary, to call the People to arms to demand it.

Though I think they use Twitter for that these days.