Wednesday, August 22, 2018

Basics of Healthcare Data access rights in USA

You should (federally required) have access to View, Download, and Transfer your medical data.


View just means you should be able to login to some web portal and see the data.

Not very useful, but everyone should be able to do this. It is most helpful when you want to see the data that the doctor just talked to you about, but when the doctor was talking to you the information overload was too much. So you want to look at it later, at home, where you can spend a bit more time with it. The idea is also that you then get a chance to think of questions for the next time you talk to the doctor. These "Views" of the data are often not the best quality, or easy to understand.


Download means that from that same web portal you can download a copy of the data.

This 'should' be a higher quality, and should be in a 'standard' format. This is where my work comes in. Most things are available in a summary report. This might be referred to as "Blue Button", a marketing term that doesn't mean anything, but was something to rally the healthcare community around. This summary report might be a simple and rather useless text file, or PDF file.  Hopefully it is a more complete CDA standard format (often called CCD, C32, CCDA, C-CDA, etc). For images, like MRI, the DICOM standard is used.

The idea of downloading these CDA or DICOM standard formats is that you can take them to some other doctor, second-opinion, or be background helping with future problem. Also you can find applications on the internet that can help you yourself investigate these, and you can find services on the internet that can analyze it for a computer driven second-opinion (dangerous in my view). You can send this data to clinical research projects that would like to use your data to better future care of the issues you have had. 

The point is that your data is YOUR data. You can do anything you want with it. You can even be stupid and leave it somewhere it should not be.


Transfer means that the data can be sent elsewhere. This is MORE what I get to define in my job...

1) Exchange: You are in California, where there is a strong health exchange. That health exchange is connected to other states via nationwide exchange. You can enable your data to flow through this network, more likely you can tell them you do NOT want the data to flow. The advantage of these kind of health exchanges is that the data is often there where it needs to be without you as a patient getting involved. For example during an emergency when you are away from home. Or during a natural disaster when you are pushed away from home. .This network that I am explaining is being used in CA to help those displaced by the wildfires. The exchange is simply doing what most patients figure is logical. This exchange helped Grandma Gloria when she would go between Wisconsin, and Texas. It requires nothing of you, except you agreement.

2) Direct: There is an agreed protocol for sending healthcare data to a healthcare provider of your choosing. This is a different network, and a different concept. In this case you must enter what looks like an email address (it actually is, but in a secure way). You pick the data you want to send. And you send it at that time. This works really well when you want to get a second-opinion, or are moving to a new home. It however requires you to request the transfer, and it is done once.

3) Apps: The newest hot technology (meaning it isn't available everywhere) is to use a third method that enables Applications. This is what Apple has added to their phones. If you have an Apple phone you have an App from Apple that can get your data. That is, if your healthcare provider has offered the data through this "API", specifically the API following the FHIR standard. This standard is very new, not really ready to be used. Apple is not the only one with a Healthcare App. There are many. The struggle is that this is all so new that there are many issues to work out. For the geeks, this is fun. For everyone else, this will be nothing but frustration for the next 2-3 years. So play with it, but don't rely on it.


I want EVERYONE to know about this. The main reason to know about it is to be happy that Exchange happens, but is controllable by you. And that Download is available for the chance that you need it for a second opinion or to help with clinical research. All the other reason to get your data are not all that well developed, so would just frustrate you. I have my data, and it just sits there on my computer taking up space.

YES I know many people find their data far more useful, and life critical. This is why I do what I do. I am simply realistic about the impact to the general public.

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