CCD or CCR conversion tools?

Quantified Self Data Formats, Export and APIs
1

Hello,
I have been on a quest to find a method for collecting and hosting my families health records together with daily tracking data in an Open Source PHR that can be shared with approved health professionals at our discretion. Although this journey initially began out of a desire to track daily medications more efficiently (https://forum.quantifiedself.com/thread-method-for-tracking-as-needed-medications) it gained greater significance after my son was born with a birth defect that requires significant attention to daily needs (Post#9-https://forum.quantifiedself.com/thread-quantified-baby).
Such has been my sense of urgency that I even violated one of my most sacred personal codes… I put my faith in a MICROSOFT product!!! Specifically, Microsoft HealthVault, which thus far appears to be the only non-enterprise oriented, PHR platform with support for multiple Health Portals and third party apps/devices, available… If I am indeed mistaken, and an equally capable Open Source alternative exists, I would gratefully appreciate the suggestion!

Unfortunately, even after “selling out”, my health information needs are far from being met. The main issue at present is the fact that we can’t integrate important daily tracking data collected through the “baby-connect” android app into the Healthvault ecosystem. Baby Connect and every other baby tracking app I’ve found on Android is sorely lacking in data migration features and only accomodates manual .csv export. Meanwhile Healthvault allows for importing data through CSV but only as it pertains to the limited tracking fields already set in their database (namely “blood glucose”, “steps” and other features oriented towards adults).

Microsoft customer support was surprisingly helpful in working with me to find a workaround (considering HV is a free product) and ultimately it appears that everything rests on being able to format data in the supported “Continuity of Care” formats (CCD or CCR).

So I would like to ask the QS community if you are aware of any utilities that either converts csv to CCD/CCR formats or that allows you to create them from scratch?

2

HealthVault does support custom data types, but it’s not for the faint of heart. Neither is setting up your own Open Source PHR.

HL7 and related formats are quite complex, but often don’t even accomodate custom data very well.

What kind of data do you have, exactly?

3

At this stage we are tracking Feedings (Nursing, Pumping or Formula), Diaper Changes (Wet, Messy etc…), Medications, Weight and Height. Another important feature is the ability to track medical symptoms like coughing, choking, respiratory issues etc… Especially since the one question that will be most familiar to any parent of a child with a chronic medical condition will be “Is this Normal?” and tracking specific symptoms in this manner allows you to bring as much information to the Dr. as possible. LUCKILY, we havent had any need for this feature, but its inclusion in the app was the main deciding factor to use it…

I tried attaching a .csv file but it wouldn’t let me so I’ll just paste a snippet (Note: Consider “Boy” to be the last name, so “Dad Boy” would be my first and last name while his would be “Baby Boy”)-

4

Sounds like your main concern is converting the spreadsheet into something your doctor can make use of? If so, have you talked to a doctor? I suspect most doctors would rather have a bunch of printouts than having to figure out how to pull up detailed data from some EHR system…

Also, how are you recording this data? Do you use a general-purpose tracking app, or a piece of paper that you later enter into Excel?

5

My main concern is getting all my families’ health data in a single, easy accessible format. Ultimately this is because we, and not our Doctor, are in charge of our own health. Our Doctor is there to advise in the area they specialize in and therefore do not necessarily need access to all of our information. However it is up to us to ensure he has as much RELEVANT information as possible, and in the case of our son, things like Diaper changes, feeding intervals, formula/milk type etc… can be very relevant to the specific recommendations they make.
Nor should it be assumed that every Dr. will have immediate knowledge of/access to his existing medical records from other providers. Whether they be in electronic form or not. For example, my son has had the same kidney function test performed by three different providers, and rather than having access to all the results in a single chart, each provider has their own individual timeline. If I have such data collected in an easily accessible format, I can send each provider the other results as they are needed in order to provide them with a fuller picture.

As I mentioned in my initial post, we’ve been using the “baby-connect” Android app to input the daily tracking data. Primarily, this serves an immediate purpose in helping my wife and I remember his last feeding/change etc… So we can be better prepared when the next bottle/diaper change comes around. That we need to be very consistent in our logging regime has a secondary benefit in the long term analysis such accrued data will provide. But we’d be very unlikely to stick to such a strict logging schedule if there were no immediate value to doing so.
That such tracking data can only be exported in csv format is a limitation imposed by the features of the specific app (or any similar app apparently) and we would not being using it by choice.

6

Can you post a sample csv file from the “baby-connect” app? That might help give a better idea of the data.

7

See post #3

8

Right :slight_smile:

I’d love to hear if anyone is using one of the open source PHR systems to manage their own health records. But I suspect you’d have to hire a team of software developers to set it up and customize it for your needs. So it’s probably simpler to keep the original data in files (spreadsheets or whatever format you get), and use general-purpose tools like Excel, R, Tableau, Splunk and Zenobase (happy to help with that one) to do specific analysis and charts that you can print out and show the physician.