You have a Right to an Access, not good or useful Access

I was approached by a peer at the HL7 meeting. She was asking my advice on how she can compel her old doctor's office to send all her records to her new doctor. The old doctor office is unwilling to do this -  more likely they are unable.  I told her that HIPAA gives her the Right to an access of her medical records. Her response was that the old hospital told her they could sell her a printed copy. I admitted that was all that the HIPAA "Right" required, and yes it allows them to charge a reasonable processing fee.

I asked about electronic access such as through a web site at the hospital (sometimes referred to as a tethered PHR), she is not offered anything like this.

She asked for them to put the records onto a CD-ROM, something that is becoming more common. They said they could not do this either. I find this one strange as Meaningful Use does check for this, even if it is poorly written criteria and badly tested.

I asked about her old doctor use of 'the Direct Project'; the short of it is that they couldn't spell Direct. This is a great geek project, but it is still too convoluted for the typical Doctor; further being PUSH only means that it only supports use-cases where the data holder knows exactly what and when to send the data to whom. Too many variables, and totally misses a large number of query/retrieve use-cases.

I ask if she has a PHR, such as HealthVault, she doesn't have one, but she checked into it and her old Health Provider doesn't support access to a PHR. I suggested that this might be her best opportunity to get electronic  access. Although it still possible she will not be able to get all the data, because the provider won't send all the data. I note that HealthVault does have the capability to take and manage it all, they are impressively capable.

There is no expected time at which this old doctor will be on a Health Information Exchange. The are confused about if this is a good thing to do or not, given the confusion around this topic in Meaningful Use. I have to agree here. I personally think that a HIE is the right solution, a it supports a huge number of use-cases. But if the USA government is going to punish them for doing it wrong; then why make any effort to do anything. I am glad that some HIEs are still being put together. I am saddened by those that have shutdown, or have changed to a Direct model.

There is simply no incentive for her old doctor to work hard at this problem. She is clearly leaving them, and thus there will be no more billable opportunities. Thus any time they take to help her out, is simply time spent with no return.

This is echoed by my family. I asked them all about how they manage their medical record and interact with their healthcare provider. Almost universally they feel they must carry printed copies, as that is the best they can get; and they are not using a PHR. Seems like the PHR 'solution' is still looking for a problem that it really solves.

I did get rather positive results on questions to my family around their use of their healthcare providers web site for accessing their lab data and scheduling appointments; their use of the internet healthcare knowledge sites (WebMD, DrFirst, etc); and if they feel empowered to question their healthcare provider. I asked these questions as I am not convinced that we can teach our way into a population that takes the initiative in healthcare decisions, a topic for which Keith has created a high-school course outline.

so as Keith says...

I wanna be an e-Patient
To be a patient like Dave
Give me my damn data!
'Cause it's my life to save

We need healthcare to get out of the mindset that the data is what is valuable. Yes it had value when it was created and initially used. But that value can't be increased unless the data flows to the next possible use. It is what the next possible use 'does with the data' that makes more value.  I hear many people saying that they know how to add value if the other guy would just share it. We must be more willing to share the data, not knowing what value will be made from it. We must be more comfortable that 'we' have the best value, that we are willing to share the data. A patient centric world, cares more about the patient than the value of data that is locked away and never allowed to ever create new value.

This is not a technology problem, it is a problem of will. There are many technology solutions laying there on the table. We need the will to deploy them.