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About IDF ePHR

The IDF ePHR is the electronic personal health record designed for the primary immunodeficiency (PI) community. Featuring innovative technology, IDF ePHR uses an advanced online system to transform how patients with PI manage their health!

Taking all the helpful features found in the original IDF eHealthRecord, the new IDF ePHR still offers a place for you to keep your information safe, secure and private at no cost. But it goes so much further! It improves on all the functionality, adding easy-to-use features as well as convenient tools to help patients live healthier lives. This one central location offers the latest advancements in health record system management.


 

FAQ's

What is IDF ePHR?
IDF ePHR is the electronic personal health record developed by the Immune Deficiency Foundation for patients with PI. It allows you to store, track and share your health information.
Can I access my IDF ePHR account anywhere?
You can access your IDF ePHR from your computer, or download the new app to access your information anywhere from your smartphone or tablet.
What type of information can I track?
There is so much information you can track! You can:
  • Track medications, supplements, diagnoses, symptoms, infections, allergies and more
  • Record Ig infusions
  • Track goals, set reminders and notifications
  • View your progress in charts and graphs
  • Create, share and print reports
  • Utilize chronic disease management tools and keep track of all conditions
  • Download medical records through Blue Button+ from participating providers
Is my information safe?
Rest assured, your information is safe in IDF ePHR. We use the latest health information technology to ensure your information is secure, including adhering to federal and state regulations, and maintaining comprehensive standards, frameworks and security controls.
How should I set up my account to manage my family’s health?
You can create records for each member of your family. The first record created should be the record for the patient with PI. Then you can create additional records. One person holds an IDF ePHR account, and records for many people can exist within that account.
Can my ePHR account sync with Microsoft HealthVault?
Yes, you can sync your IDF ePHR with your Microsoft HealthVault account to access information from various labs, pharmacy systems, personal health devices and health resources.
What does IDF ePHR cost?
IDF ePHR is free! There is no cost to you or your family members. As an online service, connect-time charges from your Internet access provider might apply.

Apps and devices that connect with Microsoft HealthVault are provided by third parties. Many are free to users, while some have charges. You are not required to have any third party applications to have an IDF ePHR or HealthVault account. Please read their terms to decide which apps and devices are right for you.

How can this prepare me for unexpected emergencies?
Tracking information in your IDF ePHR can help you in unexpected emergencies. By creating a “Health Snapshot” profile, you will have all your health information in one place in the event of an emergency.
Why should I use IDF ePHR?
Like many patients with PI, you probably keep track of large quantities of medical information. IDF ePHR was designed specifically for patients with PI, so you can streamline how you manage and organize your health information—anywhere, anytime. So it’s not a chore—it’s simple and intuitive.

Plus, you can set healthcare goals and use personalized care plans to improve your health, and you can make medical visits with your healthcare provider more beneficial by sharing your organized, comprehensive health information from your ePHR.

I used the previous IDF eHealthRecord. Will my information be transferred to the new system?
Yes! If you already have an IDF eHealthRecord account, don’t worry—all your previously entered information will be in your new IDF ePHR account. It couldn’t be easier!
How do I become a part of PI CONNECT?
An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the new IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI. Bringing together this information through PI CONNECT gives researchers valuable insight into the patient experience.

Click here to learn more about PI CONNECT.

What are the system requirements to use IDF ePHR?
IDF ePHR works with all standard browsers: Internet Explorer, Firefox, Safari, Opera, and Chrome. We recommend that you use the latest version of your preferred browser. IDF ePHR requires that you enable JavaScript and cookies. Your Internet provider's service fees may apply.
What if I have questions?
We are here to help! Simply e-mail info@idfephr.org or call 800-296-4433.

So, get started today! It’s time to join many other patients and families in the PI community and simplify your life with the new IDF ePHR!

Create Your IDF ePHR Account and Join PI CONNECT in 4 Easy Steps!

  1. Create Your IDF ePHR Account

    Go to www.idfephr.org and click “New User” and create an account. You’ll be asked to enter your basic information. IDF ePHR is an easy way to safely and securely store your information in one place.

  2. Begin Your First Record

    You can create records for your whole family, but the first record you begin with should be for the person with PI. All other records that follow do not require a PI diagnosis. Be sure to enter all required information, and accept the terms and conditions. Those who have a PI will be asked to consent into PI CONNECT.

  3. Join PI CONNECT

    Join PI CONNECT, the IDF Patient-Powered Research Network, and be a part of research! You will be asked to join, or consent into, PI CONNECT, which allows patient-entered data from your IDF ePHR to enter into the United States Immunodeficiency Network (USIDNET) patient consented registry. Once you join, you can participate in research conversations on the PI CONNECT forum.

  4. Start Using the IDF ePHR

    Your IDF ePHR is your personal health record. Record your medications, track your infusions, set goals, reminders and notifications—make it work for you. Customize your ePHR and sync with Microsoft HealthVault to access information from various labs, pharmacy systems, personal health devices and health resources. Make time with your clinician more beneficial by sharing organized, comprehensive information from your ePHR. Most importantly, use IDF ePHR to help you live a healthy life!