Colleague in patient empowerment Susannah Fox e-mailed me this question and so we thought we’d start one.
Jay Parkinson, MD, linked to a discussion happening on Digg in his blog. E-patients is also hosting an informed discussion on their blog.
Is it cliche to say that this is evolutionary, not revolutionary? I think it’s of benefit to patients and our profession that a dialogue has started around moving health care data in a standardized way to a place where people can aggregate and do things with it to improve their health. A year or two ago, it was hard to think about a standardized extract of a medical record that you could send from an EHR system except in very specialized situations. Now you can do with several partners, Google being the most recently announced option.
I didn’t even think about writing a special post about it, even though I thought, “Cool, this work will support the ideas I am exploring with the California Healthcare Foundation, that patients can be involved and active in their care, across health environments (health system, work, play).” So rather than writing about it, I just incorporated the possibility into the work we’re already doing, which is great.
I think of privacy as a state of being that allows a person to feel comfortable seeking health care regardless of the issue. This is a good place to be, and when that state of being doesn’t exist, people will seek it out, even if it means not seeking needed care, which could be devastating both to patient and health system. At the same time they seek comfort, they also want to build confidence in their ability to manage their health by having as much information their care as possible. In systems where patients have good access and trust, the care is better, and it feels great (and is great) to provide and receive care in that setting. Both things are important, we should not sacrifice one for the other; every patient deserves to achieve their life goals through optimal health.
3 Comments
Thanks, Ted, for posting my question and bringing your optimism and knowledge to the conversation. One important distinction – I would call myself a “patient empowerment observer” since I collect and analyze data about the social impact of the internet, I don’t advocate for any outcome or position.
Here is some background on my perspective:
The Pew Internet Project, since our first survey in 2000, has been talking to people about how they use the internet to gather information and make decisions regarding their health, finances, and music collections (just to name a few). Over the last decade, the internet went from being slow and stationary to being fast and mobile. Attitudes about “privacy” have shifted, first by the dataveillance that followed 9/11 and then by the fun everyone has been having with social media. (Note that I put “privacy” in quotes because I believe it that has become a junk term and therefore meaningless, as has “personal health record” and “digital divide,” making these issues difficult to discuss, much less study.)
I like attitudinal surveys as much as the next data geek, but I think one of Pew Internet’s strengths is measuring people’s actions. What are people actually doing online, not just telling a pollster about what they might like to do in the abstract. Internet users may express concerns about control over their financial data, for example, but many are banking online.
It’s not yet clear to me how things will shake out with the attitudes and actions mixed up in the Google Health launch (or any of the other related developments). Will we see e-patients with chronic conditions once again leading the way because of their intense interest and need? Will we see the once-burned, twice shy reaction of peer-to-peer downloaders who contracted spyware (if there’s a data spill)? Will we see social media fever spreading to health?
As John Grohol wrote at e-patients.net, “This is a ‘big yawn’ even to most of the world.” But I’ll admit I’m on the edge of my seat.
Susannah,
I like "patient empowerment observer," for you, "patient empowerment advocate" for me. Teamwork! I don't advocate for any product or service, just what it means for patients, which is a great role for a physician, in my humble opinion.
And I hope the answer to most of the questions in your post will be yes, or we can help it get there (with information from you and advocacy from me),
Ted
> I think of privacy as a state of being that allows a person
> to feel comfortable seeking health care regardless of the issue.
I'd consider that a *side effect*, not the pivotal criterion. The defining principle is, the data is nobody's damn business but mine, and DO NOT play fast and loose with its security.
It's a two-sided problem. First, I might have something in my past that I really don't want getting leaked into government hands, employer hands, etc. (Remember that a huge risk with USA Patriot is that data can be given to government agencies "and other parties," with no specification of who those parties are! At least that was true the last I heard.) It could be a disease with stigma, it could be an abortion, it could be who-knows-what. It's nobody's damn business. (I have neither.)
The second is the flip side of that: if there's a perceived chance of something being leaked, people will avoid getting treatment.
Plus, at work I had a nasty encounter with Google's ethics this week.
For those reasons, the very thought of a non-HIPAA-regulated entity trying to get our data is repulsive. This is medicine, not Cool Toys 2.0.