I mean no disrespect to the people who crafted the 800-plus pages of the HITECH meaningful use regulations, but I am only half-joking when I offer a slightly abbreviated vision of MU:

The day a cancer patient's wife doesn't have to ask for a lab report to be faxed to her, so she can scan it, convert it to a commonly available format, and email it to another doctor, but can instead say, “Can you e-mail a copy of that to Dr. X? And cc me on that?” is the day the healthcare industry will have truly achieved meaningful use. And not one day before.

I've been covering the healthcare and technology industries for 15 years. For the first 13 of those years, every story was approached in the best third-person, arm's-length perspective journalists are trained to assume. But after I was diagnosed with prostate cancer late in 2009, I began the profoundly first-person odyssey of researching clinical trial results, of evaluating hospitals and physicians, and of trying to find a way to give myself the best shot at beating the malignancy and getting on with a normal life. The anecdote above wasn't hypothetical. My wife had to ask a world-famous cancer center — that had charged me $13,000 for three hours in their labs — to send her a fax of raw lab results so she could convert it and send a PDF copy to a urologist at another hospital for a next-day consultation; we needed to be absolutely sure that data got to him in time. The cancer center didn't send things electronically, so we opted to ensure it got there by doing it ourselves.

While it's heartening to see the HITECH money flowing and even small practices going electronic, avenues for patient access and advocacy seem to be lagging — Google Health is DOA and Dossia is, in the words of Chilmark Research analyst John Moore, “not exactly setting the world on fire.”  

Healthdatarights.org, which gathered endorsements from tech luminaries such as Dr. David Kibbe, Peter Neupert and Esther Dyson, appears to have gone moribund before the e-ink was dry on the signatures. There's been no activity on its website since 2009 and a request for comment disappeared into the ether.

Dr. Robert Rowley, chief medical officer of Web-based EHR PracticeFusion, thinks Google Health failed because it was an example of a “disconnected” PHR, in which the consumer/patient had to be their own medical records librarian and actively make connections between disparate organizations and labs. On the other hand, Rowley said, Kaiser-Permanente's 30 percent usage rate on its PHR speaks well for the “connected” model, in which clinical data is automatically loaded into the PHR. Rowley's only reservation with the Kaiser PHR is that it's landlocked within Kaiser, and doesn't move with the patient if he or she leaves for another network. And unfettered records mobility from anywhere, to anywhere the patient chooses, should be the whole point of meaningful use.

My primary care group, HealthOne Physician Associates, which has two Connecticut locations, adopted an EMR two years ago, but the transition wasn't seamless. There was no patient portal and my physician, while taking advantage of CPOE, wasn't giving out paper reminder slips or results for lab tests. I thought I had entered the worst of both worlds. But the group has now launched its portal, even though Dr. Charlene Li, who led that effort, says patients have not been clamoring just yet.

“We have tons of people giving us their e-mail, but only one in five have actually signed up for the portal,” Li explained. “We just sent the second invitation, and got a little bump. From a cost point of view, it's not effective if I don't have people signing up.”

The practice hasn't back-populated the portal with existing data — Li continued that the shoestring nature of launching it in a small practice, plus consternation some patients expressed upon receiving fully populated records without ever asking for them, has delayed that. Li said they are trying to develop the MU-mandated components as quickly as they can, however. Patients who are impatient about getting their entire record online, she said, are not the norm.

“I think people are so used to what they had. I have my silo of information, somebody else has their silo, and they don't really have access to any of the silos, even though it's about them,” Li said. “This is a whole new world, I think it'll come pretty quickly, but our silos still don't talk to one another. If I want to transmit something at the moment I have to send things by fax.”

Josh Lemieux, who was the Markle Foundation's personal health technology director from 2003 until late August, says the players involved in the Stage 2 MU specification process, including the HIT Policy Committee, have recommended a “view and download” mandate to ONCHIT. That's great, but a “view, download and forward” stipulation would be ever so much more useful.

The IBM PC was introduced 30 years ago, and the generation that entered the job market with the dawn of the desktop is now entering the midlife years of utilizing healthcare facilities more. They are used to downloading Adobe Acrobat Reader and getting access to just about anything on any computer, anywhere. There are, of course, land mines in dictating formats — the brawl that Microsoft and the Commonwealth of Massachusetts entertained us with in 2005 over the proposal to make Open Document Format and PDF the state's official formats is a prime lesson — but it shouldn't be that hard to find a common patient-empowering workaround for transferring records while the HIE's and other integration platforms are being built.

“It seems to me that systems are at a point where we should be able to just communicate, like cell phone to cell phone,” Li said. “This is not rocket science.”