(And Where He’s Right.)

So Google Vice President Adam Bosworth posted a bunch on the Official Google Blog about his ideas for fixing health care information sharing , after the unfortunate death of his mother, after her cancer symptoms were missed for 9 months.

He talks about Google Co-Op , which lets users define high-quality websites–in this case, doctors can mark certain sites as providing accurate health information, so that patients could feel comfortable that a site is providing reliable information. This is really important–first, there’s a lot of bad or incomplete data out there on the web about medications, side effects, diseases, treatments, etc–and I’m always educating patients about things that are incorrect (or that they’re mis-read or mis-interpreted) from the web. Second, it’s important for providers to have access to accurate information, too–you might be frightened by how often providers Google a drug to find out the right dosage.

An even more interesting idea is his concept of the “Health URL”–essentially, one central website where patients could store and access all their health information, and could then give doctors access to said website to review their records. In theory, this is amazing. Right now, one hospital can’t get lab results from a hospital across the street electronically. We can’t view x-rays, read medical reports, even the most basic of things you can do with pretty much any other part of society now.

He’s gonna run into some major issues–namely HIPAA, that heart-in-the-right-place-but-implemented-so-incredibly-awfully law that is supposed to protect your privacy, but actually doesn’t, and impedes patient care.

And then there’s t his post about “Google Scrapbook” , which could turn into the “Health URL.”

Now for the problems:

This is great for sick people and people with chronic disease. It’d be great to have this information, to know their history, see what tests have already been done, view previous scans, etc. And while more and more of medicine is chronic disease management, does Bosworth think patients are actually going to be actively involved in this? Those with cancer and other terrible, possibly-fatal illnesses or unclear diagnoses will certainly be interested. But getting the folks with diabetes to get involved? Much harder. It’s the classic issue with human nature–we’re much more likely to invest in things that provide relief or help for the present, but we’re not as good with short-term pain, long-term gain. (Often we have enough trouble just getting patients to take their meds, let alone maintain some sort of “health URL.”)

Will people trust Google with their data? Having a computer read one’s emails and supply ads is one thing–but will people be sure that people will be okay with knowing they’ve had an STD, or take Viagra, or have had an abortion, or on anti-retroviral drugs?

Finally, in a talk Bosworth made about his mother’s care, he writes:

Once she was diagnosed, it was extraordinarily hard to determine with whom she had the best
chance of recovery or remission. While in the end we found an amazing team, it was much harder
and scarier for her than was necessary. And recently, as she was dying, there was no way for her
physicians, nurses, health aids and hospice workers to collaborate online to ensure that they knew
what is happening with her, that the right medicines are being delivered and dispensed, and that
she was as happy as she could be. My mother couldn’t possibly keep up with all of this, and
neither could I. So, for lack of an easy way to find the right specialist and for lack of
comprehensive medical information about her that could have been shared between her doctors
and caregivers, she ended up being sicker than she should have been and dying sooner than she
should have.

We already have specialists that can often help with these issues. They’re great communicators, and work with different parts of the medical field to coordinate care: they’re called internists, or even more specialized, palliative-care physicians. But here’s the problem: we’re running short on internists, and we train very few palliative care docs every year. And why is that? Money and happiness with the jobs, plain and simple .

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