Consumer engagement is one of the most critical issues facing any project that is facilitating the exchange of patient health information. While consumers have a lot to gain from better provider access to their information, there are also privacy risks involved. Therefore, consumers need to be carefully informed of how their data is being used, including the benefits and the risks. This is especially important given the general lack of awareness amongst the public about health information exchange activities. But questions remain as to when and how consumers should be educated. We look forward to your thoughts.

I find it curious that the EFF (http://www.eff.org/) has not yet been involved to any great degree in the HIE debate.

Health Information Exchange is poised to catch up to industry at roughly the same time that accidental personal data disclosures seem to be commonplace occurences in the news; either a credit card company or a governmanet agency seems to lose a computer every other day. Of course, the volume is driven by a newly-minted transparency based on new law that requires public disclosure of these kinds of events, but still, the public is already being bombarded with news of trustworthy organisations that consistently fail to protect their customers' or constituents' private data.

HIE is going to be hobbled by this, and needs to come out of the gate strong. Consumer education (in NY) should be coming from the governor's office, not the industry. No-one knows what a RHIO is, no-one outside of the industry has ever heard of HIE; and until it becomes a reality, no-one cares.

Moving to an electronic health information environment is - to my mind - as big a shift as moving to decimal currency, or the recent example of countries moving to the Euro, or switching which side of the road we drive on; and the movement to electronic health information deserves no less of an education plan from local government than any of the other examples.

I would bet that the general public does not want a hospital, or a health plan, to tell them how their personal information will now be available as readily as their credit score. They'll want the news from trusted third parties that don't have the appearance of industry-backed conglomerates.

That's just my 2 shillings.