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EPHR

Track Your Health with IDF ePHR

It’s time to organize your health information with IDF ePHR the electronic personal health record designed specifically for the primary immunodeficiency (PI) community. Keep your medical info safe, secure and easily accessible at no cost to you. Use the web version at www.idfephr.org, or download the app at iTunes or Google Play to log health and fitness goals, utilize the calendar, and set reminders and notifications. IDF ePHR is transforming how people with primary immunodeficiencies manage their health. Plus, once you've created an IDF ePHR, you can contribute to research by joining IDF PI CONNECT.

Help Advance Research through IDF PI CONNECT

Give researchers a first-hand account of living with PI by sharing your information through the IDF PI CONNECT Patient-Powered Research Network. As a user, become a part of the USIDNET patient-consented registry, which helps advance research of PI. Your information is secure, aggregated and de-identified. Plus, you get access to the exclusive IDF PI CONNECT Research Forum where you will be able to:

  • See research questions as they are posed and offer your opinions about them.
  • Propose your own research questions that matter to you.
  • Attend live webinars with researchers.
  • Have your ideas heard and translate them into actions.

Get Started in 4 Easy Steps

  1. Go to www.idfephr.org and click "Create 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. 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. 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. Record your medications, track your infusions, set goals, reminders and notifications—make it work for you. Customize your IDF 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!

For more information, e-mail info@idfephr.org or call 800-296-4433.

IDF ePHR is sponsored exclusively by CSL Behring.

 

FAQ's about IDF ePHR

What is IDF ePHR?

IDF ePHR is the electronic personal health record developed by the Immune Deficiency Foundation (IDF) for people 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 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 with your IDF ePHR! 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
  • Sync with Microsoft HealthVault to access information from various labs, pharmacy systems, personal health devices and health resources

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.

HITRUSTAs IDF’s vendor for the IDF ePHR, Get Real Health’s InstantPHR meets the security standards of HITRUST (Health Information Trust Alliance). HITRUST is the most rigorous and trusted standard for health information. There has been no security breach of InstantPHR, and there is continued monitoring of security controls over time to ensure compliance with HITRUST standards.

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 person 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 IDF 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 people with PI, you probably keep track of large quantities of medical information. IDF ePHR was designed specifically for people 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 IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for people with primary immunodeficiency (PI) with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand people with PI. Bringing together this information through PI CONNECT gives researchers valuable insight into the PI 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.

For more information, e-mail info@idephr.org or call 800-296-4433.

FAQs about PI CONNECT

What is PI CONNECT?

PI CONNECT is the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for people with primary immunodeficiency (PI) developed by the Immune Deficiency Foundation (IDF), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand people with PI.

Why should I join PI CONNECT?

It’s a great way for you to be a part of research! Bringing together your information from your IDF ePHR through PI CONNECT gives researchers valuable information about people with PI. You can also join the research conversation in the discussion forum.

What is PCORnet?

IDF was approved for a funding award for PI CONNECT from the Patient-Centered Outcomes Research Institute (PCORI). PI CONNECT is a part of PCORnet: the National Patient-Centered National Clinical Research Network. PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies, giving people with PI “a seat at the research table.” PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research. PI CONNECT along with all networks in PCORnet will form a new national resource that aspires to boost the efficiency of health research.

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.

For more information, e-mail piconnect@primaryimmune.org or call 800-296-4433.