It’s 2015…Do you know where your personal health data is?

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Today we have the opportunity to bring as much information as we could ever want with us everywhere we travel. Access to cloud services are now simple, plentiful, and growing. Think of some things you might keep in the cloud today – email, work documents, music, movies, pictures – many of us utilizing these services have immediate access to all things digital that they could ever need. These are all personal files, so why isn’t your health data in there too?

During my days working in clinical research, all too often I would see a badly crumpled and stained piece of paper that listed every medication a patient had taken in their lives. There was often no way of telling which were current, what the correct dosage was, or who/why these medications were prescribed. Anyone working in a care setting has seen this before. Similarly, recalling one’s entire medical history by memory and inquisition is no small task and self report on medical issues from a non medically trained patient is not the most reliable source of information. There is a way to make this easier on you (as a patient) and your caregiver. If you are going to the same doctor for your entire life, maybe this post isn’t for you. For most of us though, this is an issue that you can remedy in a few days with minimal effort, you just can’t let the 1’s and 0’s intimidate you. Check out my advice after the jump.

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I’ll provide a personal example, I have my health data stored in a cloud account tied to one of the services I use frequently. It is accessible via my phone, tablet, and any computer with an internet connection. As well, I have offline access for the files for my personal devices in the event I’m stuck without a connection. In it I keep an export pdf of my Electronic Health Record (EHR), important phone numbers related to my care, my own medical history excel file, and all of my insurance information (including the card itself). As an iPhone owner, I have also imported some of the pertinent data into the Medical ID portal that is accessible without my passcode verification. This includes any current medication, major medical history, basic vitals and emergency contact information. I’ve used this information while scheduling an appointment, pre-screening when I moved from Philadelphia to Baltimore, in the waiting room, and in the office while speaking to the doctor. Neat!

In my next post I’ll talk a bit about the tools used to collect and keep this data as well as how having this data at your fingertips can benefit you in some pretty significant ways, but first I’d like to offer some of P’s tips on storing your personal health data.

  1. Keep it secure…but accessible: You don’t want your personal health record (PHR) out in the open and if you are taking control of storing your PHR then you must take the necessary steps to ensure its safety. This includes strong passwords on your accounts including passcode verfications on your devices and personal computers. There are services that are more secure than others and many that are made specifically for health data. I choose to manage the data myself but you may prefer a service. Whatever you choose, make sure you and your healthcare provider can access the most important information without your help or an internet connection and the more detailed information with your password and consent.
  2. Keep it simple…but sufficient: A doctor’s time is precious (aka expensive) and I’m sure if you’re reading this you know that they don’t love to spend more time with a patient than they need to. Keep your information simple, something your provider can read through as fast as a medical record. If they need details they will probe and can get them, but for it to be useful they have to be able to access the important stuff quick.
  3. Keep it accurate…but nothing, just keep it accurate: No exaggerating, no lies, no forgetting to add things. You want the best care? Keep it accurate
  4. Keep it updated…but don’t go nuts about it: You want your health information to be up to date but hopefully your health isn’t changing all that much in a years time. I update mine about once a year, and one of the easiest ways to accomplish this is to request an e-copy of your EHR from your provider. If you’re in the US, you have a federal right to this data, take advantage of it.
  5. Keep it quantifiable…for the future: Right now I’ll admit that having your health data stored with analytics in mind might be my inner nerd telling me I’m doing something more important than it actually is. However, I’d go as far as to say that all of your data should be stored with future analysis in mind. This means less free text and more standardization. Doctor’s free text notes in medicine are important in the quality of care but much of what is done in health can be stored with analysis in mind (Dx code, symptoms, vital signs, demographics, dates, severity scales, etc). My information is unimportant to an outsider, but put 1000 outsiders information together and it starts to get interesting, make it 100,000 and it becomes valuable, collect 1,000,000 and you can disrupt healthcare. At worst, if your data is never used for the greater good of mankind then you can humor your physician later in life by presenting to them an info-graphic of your health history. 

It is time to give your personal health data a checkup, that mess of scribbly notes written on the back of a doritos bag with your medical history just doesn’t cut it anymore.

-P

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