Power to the People

Jan. 1, 2006

Sixteen independent hospital systems jointly save $1.4 million annually.

What do RHIOs have in common with the Julia Roberts/Richard Gere movie, “Pretty Woman?” You are right if you identified the early segment in which Vivian explained to Kit the career benefits of their independence when she said, “We say who. We say when. We say how much.”

Sixteen independent hospital systems jointly save $1.4 million annually.

What do RHIOs have in common with the Julia Roberts/Richard Gere movie, “Pretty Woman?” You are right if you identified the early segment in which Vivian explained to Kit the career benefits of their independence when she said, “We say who. We say when. We say how much.”

Who, when and how much are destined to become critical considerations as consumers get wind of the NHIN (national health information network) and the industry-embraced vision of an interoperable, data-sharing EMR for every patient–and they will if Time, USA Today and Business Week continue down their already prolific path of public education.

Today, right now, is the time for us to address complex consumer concerns that extend beyond the standard discussion of security and protecting patient privacy. In fact, the discussion shouldn’t be about “us” protecting “them” at all. It should be about “them” being informed, educated, able and willing to decide who is authorized to see what medical data, when and for what purpose–perhaps even on a case-by-case basis.

My health plan sends me paper EOBs for Robert Blair. When I called member services, they assured me they knew my (legal) name is
Roberta and I am accurately recorded in their system. But, I was told, their EOB-generating system won’t accommodate a first name of more than six letters. What are they using–DOS Protozoan?

Two years ago, my PCP asked me what I do for a living. When I told him he said, “Oh, you are one of those people trying to get us to change [from a paper-based record]. We don’t want to change.” He hasn’t changed yet.

How’s that for receptivity?

Eight years from now, will I be handed a leaflet and perfunctory forms by my PCP’s front-desk staff and asked to sign my agreement to allow data sharing among the providers of my healthcare? Probably. That’s what happened with HIPAA–a leaflet, three forms, a clipboard and a pen–and that’s all that happened. If I hadn’t known about HIPAA before entering the doctor’s office, I wouldn’t have understood any more after signing the required forms.

When HIPAA loomed large, every healthcare provider I tried to engage in discussion demonstrated only annoyance with the new procedures required by the new regs. “Look at all this work the feds have dumped in our laps” was their message to me. I naively basked in personal smugness, because I probably knew as much about HIPAA as they did, but HIPAA was a day at the beach compared to the NHIN.

The EMR/NHIN vision is magnificent, but so far, the identified players are the regular crew: providers, payers, politicians and vendors. Who is missing from this picture?

Eight years from now, will I routinely sign up to be a participant in the NHIN? I don’t think so. Not until my health plan can accommodate seven letters. Not until my physician worships his EMR. Not until there is a massive, comprehensive plan to engage and empower consumers as the pivotal players they are–and to fully educate them about the rewards, risks and ramifications of nationwide data sharing. Not before I can authorize every instance of data sharing, and not until I am convinced that the safeguards implemented at every end are sufficient to protect me. Until then, I say who, I say when and I say how much.

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