Patient Data Centered Around Whom?

HITECH and its subsequent regulations are transforming health care from within the walls of almost every hospital and clinic across the United States. As this ripples outward, states and regions are launching initiatives to create health information exchanges (HIEs) generously supported through funds and resources from the Federal government.

Transformation in health care is needed

At some point soon, we need to get patient data into an electronic format. The importance of this is driven from more efficient transfer of patient data between various care givers and better reporting on outcomes and quality indicators. Although this may be over-simplified, the crux of the transformation is “let’s move health IT into the 21^st century.”

What does this all mean for us as citizens and as patients? It means we should be aware and involved with what is unfolding. Here is just a sample of conflicting statistics.

• Despite privacy concerns, more than three quarters of Americans favor the use of electronic health records (EHR) (February 8, 2001, University of Chicago)
• 50 percent don’t understand what an EHR is, and 30 percent don’t understand the value of why an EHR is important (PricewaterhouseCoopers, March 2, 2011)

These two incompatible statistics suggest that most of us support EHRs, yet 50 percent of us don’t even know what it is.

There are two key points which spring from these findings:

1. There is a disconnect between what is happening in health IT and what the public understands about the health IT initiatives. The transformation happening is centered on EHRs and HIEs. The mission is to get data into an electronic format and then deliver the capability to exchange it between care providers (e.g., physicians, labs, hospitals, radiology, etc.).
2. The consumer is a powerful force. We, as US citizens, need to get involved in the conversation and begin learning more about EHRs and what is unfolding in our health care system, especially in terms of our data. Our voices, and expectations, will help drive these changes and provide better outcomes for all parties involved.

Why should we wake-up to what it is happening

In my opinion, the first part – getting patient data into an electronic format – is essential. This is, fundamentally, what the move to EHRs will accomplish. Having the data in an electronic format increases its value vastly. The opportunities to track and analyze have been hardly realized, given that the EHR transition is in the early stages.

The second part – implementing HIEs to exchange data – liberates the data between your various providers. Many taxpayer dollars are being spent on both EHRs and HIEs. However, if implementing EHRs are challenging, just wait… HIEs introduce much more complexity and potential for becoming ongoing financial burdens.

HIE model

HIEs have a valuable intention, yet the complexities are significant:

• Getting patient consent to share their data between providers
• Identifying the right individual in which to exchange data. Is it John Smith, Jon Smith, John T. Smith, or Jonathan Smith? Identifying or matching the right patient to the right data is critical.
• Setting up the communications, privacy, and security measures to ensure integrity across the exchange network

Although there are many others, for a blog post, this is all that can be reasonably covered. The point is this is a complex model requiring many moving pieces to all come together to perfection. As depicted, the HIE model is run by a third party organization. This governing body needs to put infrastructure as well as policies and procedures in place to facilitate the data flow between the different care delivery organizations.

A different model:  The Personal Health Record or PHR model

Rather than a governing organization in the middle of the data exchange, another model places you – the citizen or patient – in the middle. The data still needs to be electronic, so EHRs remain essential. You need to receive your data or patient records from the different physicians in an electronic format, so you can store it in your PHR.

The primary difference between the PHR and HIE models is that, in the PHR model, you decide what to send to what physician in the delivery of care of your physical and mental well-being. There is no third party organization in the middle orchestrating the data flow.

Yes, there is responsibility placed on you to collect and deliver your data.

Yes, there is a chance that you may not deliver all your data to any given physician.

Yes, it would be similar to collecting your financial information together into Mint, Quicken, or some other tracking and reporting software.

Having said all that, similar risks exist in the HIE model (plus others), and the cost of the HIE model would be, I believe, much greater.

Although the banking or financial comparisons to health care are overused, the reality is you already do these activities for part of your life. The well-being of your body and mind are equally important to be in control of and facilitating the dialogue between providers.

You own your health and should be willing to engage professionals to ensure you stay as healthy and fit as possible.

Taking control of your health is an empowering feeling. It does not mean that you are doing your own diagnosis or writing your own prescriptions. It means that you decide what data is available and when the data is available to the physicians you choose.

Why it matters?

To a certain degree, it comes down to simplicity. HIEs carry a lot of overhead with them:  organizational structure, IT infrastructure, complex workflows, etc. The PHR model centers the data with you, enabling you or your designee to send relevant information to physicians who need it.

Rather than taking an old concept like HIEs and just applying funding towards it, it may be better to leverage technological concepts from other industries and apply them to health care. It also is essential to keep patients in the center of the data flow, I believe, and the PHR model facilitates a more empowering and responsibility-focused approach than the HIE one.

Next time you see an article in the paper or on the web about EHRs, PHRs, or HIEs, don’t skip it. Read it. Understand the transformation taking place, and ensure it makes sense. After all, your tax dollars are incenting the health IT (r)evolution, and it is your health care.