This is a lengthy piece at modernhealthcare.com but one worth reading. The complex issues raised are indicative of the future debates looming as EHR, RHIO, NHIN, etc. . . continue to gain traction and come up against issues of patient privacy. I'll summarize here but I recommend taking the time to acquaint yourself with this in more detail - it will be a recurring theme.
- Initiate Systems makes a software application used in healthcare to link patients to their reccords by running a probabilistic matching algorithm.
- The software is currently used by RxHub to check patient eligibility for drug benefits and by SureScripts, whose "data-transfer network is fast becoming a de facto standard for e-Rx linking between clinicians and pharmacies."
- Initiate also worked recently with the Veterans Health Administration to augment their patient identification system.
- Initiate Systems' software is used by MA-SHARE, a Boston-based RHIO that is participating in an HHS prototype of the NHIN.
- Initiate received "Series E" funding in February from In-Q-Tel, a venture capital firm founded in 1999 by - and still financed by - the CIA.
- All relationships, while not exactly publicized, were fully disclosed by both In-Q-Tel and Initiate Systems
So the software created and sold by Initiate Systems is used to sift through patient data and find connections between patients. The average American's greatest concern about the creation of a national information exchange network for their health data is privacy. The CIA is involved. That seems like a scenario that could create some ripples. . . and it has.
Dr. Deborah Peel, chair of the Patient Privacy Rights Foundation "called the CIA connection 'outrageous,' noting that it simply doesn't
pass the sniff test. 'Who doesn't believe if the CIA puts up that
money, they won't have access?' Peel said. 'I'm still not satisfied.'" Meanwhile, the folks in charge of almost all the principle players - with serious stake in how this relationship is perceived - don't seem concerned:
- Mark Overhage, with Indiana Health Information Exchange: "I don't worry much about the support Initiate has received. . . Initiate doesn't have access in any
way."
- John Halamka, CEO of MA-SHARE: "I don't have specific concerns that the CIA would use this to compromise the privacy of health records. . . The Initiate algorithm is simply a generic way to take a whole set of information and filter through it."
- Rob Cronin, Director of Corporate Communications for SureScripts: "We use various technologies to deliver our services, but the makers of
those technologies never have access to our systems and data, period."
- Daniel Garrett, VP and Managing Director of Computer Sciences Corporation (lead contractor in the MA-SHARE-NHIN prototype): "[It] is something I would definitely ask my team to take a look at, but what
I think would come back is that it's software that's being imbedded and
they (Initiate Systems) don't have access (to medical data)."
I'm ambivalent on this. On the one hand, this is exactly the sort of thing that gives rise to statements (by Dr. Peel) that "[i]f privacy is not fully protected, we won't be building anything except
the most valuable mother lode of information for data mining on Earth." When people feel that their information is at risk, they aren't going to get behind a NHIN. That won't make it any easier to implement. So I say, perception-wise, this is - or at least could be - problematic.
On the other hand, many of the folks I've heard talking about this on the "patient advocacy" side seem a bit shrill. Someone will always be there to point out that the sky is falling; it's easy to enumerate all the ways that bad things can happen. And they aren't wrong. Bad things can happen but it doesn't mean they will and it doesn't mean we should stop progress to avoid them.
In this instance, I think this is a bit of a tempest in a teapot. But please click through, read the story, and tell us what you think.