I have a fairly geeky abstract question about one aspect of the e-patient world. It’s not pivotal for issues of empowerment, access to care, etc, but as my friends and I keep learning about participatory medicine, the topic of social networking keeps coming up. And the topic came up on another blog last week, in a way that puzzled me.
If you’re not interested in geekier abstractions, have a nice day and I’ll see you next time. :–)
On Thursday, Beth Israel Deaconess CIO John Halamka’s Cool Technology of the Week feature spotlighted an announcement by Google Health: they’ve added the ability to share access to your Google Health data, so you can invite others to look at your data.
Halamka calls this “social networking.” (Note: Google’s announcement didn’t say that, John did.) This struck me as odd: to me social networking is all about the *new connections* you make, as you connect with new people you probably never would have met, people forward links to each other, etc. And I sure hope my medical data wouldn’t spread that way!
So I commented and tweeted about that, and a most people agreed. But in a backroom exchange here on e-patients.net, John Grohol disagreed:
Most definitions of social networking I’ve seen may imply propagation, but do not explicitly require it. By sharing information with a specific network of a dozen individuals, you are already propegating that information from your personal file, to the files of a dozen others. If it goes no further than that, that’s still social networking.
As the founder of the highly successful PsychCentral, John knows a thing or two about what makes a difference in social networking. But I still don’t see it his way. :–) You?
Some soup starter for you: Google results for define: social networking.
Dave,
Sorry I missed the tweet discussion…
Isn’t “social networking” the, partially virtual, equivalent of what the old neighborhood was?
And I would certainly not want all my neighbors to know all my data….
At the same time I’m considering putting the history of my illness on my site, which means not only sharing it with my social network, but with the world which is like publishing a book in the non-virtual world.
Isn’t the big difference that in the “virtual” world the data are not delivered orally or on a paper you can destroy, the data is there to last which is a contradiction in terms….
Lodewijk
I think everyones medical files should be kept strictly confidential and the only thing that should be made digital in medical records is backup files for each doctors patiient and office. As an acting telephone triage specialist I am furious over this, just another way for people to steal identities, defamation of character, etc, etc
The only way I can imagine record sharing could qualify as social networking is if the record sharing were accompanied with a question, like “look at my med list, do you think my symptoms could be from drug interactions?” or “look at my lab results, did you ever have this abnormality and what did it mean for you?” But since Google Health record sharing is “all or none,” that won’t happen much. But I bet Google Health has selective record sharing on the ‘to do’ list.
And toward the concerns about confidentiality from ‘ask a nurse’. We need to weigh risks and benefits. As an internist and hospitalist, there have been many, many, many times when I could have ordered fewer tests or radiologic studies if I had access to records of tests already done. If you’ve ever tried to get access to records from a closed physician office in the middle of the night, you know what I mean.
Hey Janeen, good to hear from you.
I have a really strong sense that getting our health records online is going to be messy at first but very productive in the end. And for some reason I have a sense that getting to the productive stage is going to happen like the human genome project: much quicker than people expected.
I have no facts to back that up, just instinct. I’m probably wrong. :–)