Washington Post's "Salon" Disaster and Health Care Reform

As a former citizen of the Washington Post newsroom, the recentdisaster 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 be health care reform.

As an independent journalist 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 health care reform by some members of Congress and the Administration, the very people who are the ultimate beneficiaries or victims of health care reform are offered no seat at the table.

Not even Katharine Weymouth's dinner table.

Three weeks ago, a number of other "stakeholders" in health care 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 health care reform plan. [Interest revealed: I signed onto it and agreed to blog on it as part of a publicity campaign.]

As I've argued previously, 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 health care 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!