Everyone Should Use Backpack Health!

Two years ago, I wrote a blog about being the medical case manager for my own family where I shared tips and tricks to keep information organized and how to keep medical records when you transfer to different healthcare providers. This has always been a challenge for us as a military family. We move every couple of years (at least) and our healthcare providers are just as transient. I carry a binder of medical records with us everywhere we go and although it is useful, it is also a pain! Cure HHT has partnered up with Backpack Health to offer a free app where we can digitize your health information and keep it in the palm of our hands!

When Cure HHT staff reached out to tell me about this amazing tool, I was beyond excited. I created an account, uploaded our family’s records, and I cannot wait to use it the next time we go to the doctor. Here is a run-through of everything that Backpack Health has to offer!

Getting Started

To use Backpack Health, you’ll first need to sign up. You can register at https://curehht.org/backpack-health.

Then you can download the app onto your phone (iOS & Android) and log in using the username and password you created at the link above. You can also use Backpack Health on the web, rather than on a phone. It is important to register using this link because you will be part of the Cure HHT community.

Backpack health is very user friendly. First, I set up my profile, then I added my husband and our two children. I can easily switch between the four of us with one click on the main menu. I would like to show some screenshots of the web version so you can see how easy it is to use. (The Android app is very similar to the web version.)

Illustrated Example

This is my daughter’s home screen. You can see on the left side a menu of options and settings. I can switch between family members in this section. The home screen shows a snapshot of Eleanor’s health information. I have added three conditions for her: HHT Type 1, Patent Ductus Arteriosus (congenital heart defect), and Chiari Malformation Type 1. Within each of these conditions, I can add healthcare providers and their contact information, notes, and medical files. On the home screen you can also add medications, allergies, surgeries, etc.

Under the Files tab at the top is where I uploaded her medical records and assigned them to one of the three conditions. Here is a snapshot of the files I have added so far associated with her heart defect.

More Details and Options

On the web version, you can add files by clicking the arrow in the bottom right hand corner. This will open a window to allow an upload from your computer. On the smartphone app, this button will allow a photo to be taken or a file or video to be uploaded. Since many of our medical records are multiple pages, I uploaded them as files. I use another free app called CamScanner to take photos of our paper medical records and turn them into PDFs. I then upload the PDFs into Backpack Health.

Going down the menu on the left, you can update the profile of each member of the family very easily. This includes name, date of birth, gender, residence, race/ethnicity, and blood type. The Providers tab allows healthcare provider’s names and contact information to be entered. Next are the Share Cards.

Share Cards give the ability to assign information to an Emergency Share Card or a general health history card. This can be pulled up within your profile or shared outside outside your profile and will contain pertinent information that you may need to share in an emergency situation. For example, if someone with HHT has a medical crisis, it is very useful for rescue personnel to have a way to know their condition quickly. Outside of a medical bracelet, this is a great option!

Groups and the New Patient Registry

The Groups tab is where the HHT Patient Directed Registry Group can be found if you register under the CureHHT.org link. Under the group tab, it will have the option to join the group. Once you join you can see group information, including contact information for Cure HHT and a list of very useful resources.

Your information is completely private, and only you have control over how much you share and who share it with. Importantly, if you want to help forward the research to find a Cure for HHT, you can choose to allow your information to be anonymously added to an HHT Patient Registry. To participate, you must first subscribe to Backpack Health, and then give your permission for your data to be used. Once the registry had sufficient participation, it will be accessible to HHT researchers, who can analyze aggregated data to help enhance diagnosis and treatment.

Juggling Paperwork and Recordkeeping

I carry so much paperwork with us every time we go to the doctor and once I get it all uploaded into Backpack Health, I won’t have to do this. I can e-mail any of the files to the healthcare team right on the spot or show them on my phone! Just two weeks ago, I had to bring all our daughter’s medical records to her pediatrician because it was time for her annual follow-up with cardiology and our last military treatment facility had not fully updated her records.. Luckily, I had everything with me and didn’t have to bother calling two different hospitals to get records mailed or faxed. However, it took me quite a bit of time to pull out all the appropriate records and make sure they were in chronological order. I wish I had Backpack Health just a bit sooner!

My Wish List for Improvements

My wish list for Backpack Health includes more options for languages – although you can already input or translate your records into six languages in an instant. But, we currently live in South Korea and I could have definitely used a Korean translation just last week at Eleanor’s cardiology appointment.

I also wish it had an appointment reminder system and more options for languages. It is very easy to add conditions, symptoms, medications, treatments, surgeries, allergies, vaccinations, measurements, lab results, or genetic testing, but there is not an option to add upcoming appointments; although you can put them in the notes section.

Don’t Hesitate to Contact Me

Overall, I know I am really going to enjoy Backpack Health. If you have any questions about how to use it I would be happy to help you. I urge everyone to try out this great resource.

To learn more visit, https://curehht.org/backpack-health/.


  1. Mildred Lundgren on September 24, 2019 at 4:03 am

    Thanks Cassie.
    Will have a look at this. Im based in Europe (Sweden). Id like to use a system that is connected to our local health board and have local (national) patient registeries. Lets see how this works first. Am excited to see its functionality. Like you i have all the hospital papers for myself and my daughter….in a pile elsewhere. One central online secure storage place ought to be very useful.
    HHT hug from the Swedish patient organisation HHT Sverige

  2. Mary Rauma Geake on October 30, 2019 at 6:11 pm

    I wish all hospitals, doctors and dentist had just ONE port so that we could get all the info from them. I’m 64 and trying to remember everything, as I have had HHT or OWR since I was 11.

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