There is great news coming from Shriners Hospitals for children, Canada! On the other side of the Atlantic, a promising tool has gained increasing popularity and is likely to represent an important step further in both transitional care and patient empowerment worldwide: the Good2Go MyHealth Passport.

Developed as an online tool, the MyHealth Passport is a free and easy-to-use way for patients to gather their personal health data and draw a comprehensive picture of their medical condition and history. In other words, it is an online form where patients can put information on themselves, just as general practitioners would do with a medical record. It is then comparable to an online comprehensive patient record that the patient can access through Internet and modify over time. A summary, what many call a ‘cheat sheet’, can then be printed as a personalized card, carried by patients as they would carry their ID or a passport, and used in various care transitions and/or emergency situations. You can for instance carry it as an attachment to the OIFE passport.

But why is MyHealth Passport such good news for the OI community? Rare diseases are known to be complex and challenging conditions when it comes to receiving appropriate care. People with OI often know more about their condition than health care providers they encounter. Hopes are that, with the MyHealth Passport and therefore a comprehensive medical history/record at immediate display, patients would be able to better communicate with healthcare providers, would feel more empowered with regard to their condition and would take a more (pro)active part into the care they receive.

In addition to providing a better overview for patients and health care providers – the passport can also be useful in emergencies. Should a potential emergency situation occur, paramedics and related actors would have direct access to patients’ health records through their passport, consequently reducing the risk of further complications and/or inappropriate care (e.g. worsening of fractures, additional issues caused by lack of knowledge, etc.).

Available for a large range of rare diseases, including OI, the MyHealth Passport represents a major step in patient empowerment and confirms the willingness of several healthcare actors to enhance patients’ quality of life and access to the best care in any situation.

Check out how you can create your own MyHealth Passport here.

At the time this article was written, the OI option in the dropdown menu was followed by ‘under construction’. Users should ignore this and may nevertheless access the OI passport.

See also our previous blog post about the Transfer Tool!

Written by:
Julien Delaye – OIFE intern