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!
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