Texas Children's Cancer & Hematology Centers

Passport for Care® Application

Passport for Care®

The Passport for Care® application is an integral component of an innovative healthcare initiative headed by faculty members of Baylor College of Medicine and Texas Children's Cancer Center that addresses the need to provide patients and survivors of chronic illnesses with increased access to their medical information and healthcare guidelines.

It is an interactive Internet resource that provides the user with accurate, timely, and individualized healthcare information on a “just-in-time” basis. Initially being developed for survivors of childhood cancer, once completed and evaluated, the Passport for Care® application will be extended to encompass the millions of adult cancer survivors nationwide. It is anticipated that eventually the Passport for Care® application could evolve into “Passports” that would address the needs of individuals with a wide range of medical conditions.
 

Passport for Care® Survivor Portal

The PFC Survivor Portal will give the survivor direct access to their treatment history and follow up recommendations as well as information about possible late complications of therapy. The Survivor Portal will be available to survivors by the end of 2012. To obtain access to the Survivor Portal please contact your oncology clinic and request that they add your treatment history to the Passport for Care and notify you when the Survivor Portal is available to you.

For additional information please contact Susan Krause at skrause@txch.org.

The Passport for Care® application for survivors of childhood cancer is being developed in collaboration with the Children’s Oncology Group to address the healthcare information needs of the estimated 350,000 long-term survivors in the United States. The Institute of Medicine and the President’s Cancer Panel have identified the provision of comprehensive follow-up medical care to long-term survivors of cancer as a critical national priority. Child and young adult survivors are often at risk for serious medical problems that result from cancer and its treatment. Obtaining consistent medical follow-up is confounded by several factors. Americans change primary healthcare providers on an average of every two years. Survivors themselves are often unfamiliar with the details of their treatment history and are unable to accurately share pertinent medical information with their healthcare providers. Primary care providers, in turn, are often unfamiliar with cancer treatments or with recommendations regarding surveillance for long-term complications of cancer and cancer therapy. In the current healthcare environment, obtaining consistent follow-up for the survivor population is extremely difficult and has been identified both by the Institute of Medicine and the President’s Cancer Panel as a major challenge to our healthcare system.

The Passport for Care® application, with security features that ensure privacy and confidentiality, will eventually contain the following elements:

  • A Guidelines Generator that dynamically assembles recommendations for care individualized to each survivor according to his or her treatment history. These recommendations are based upon the Children’s Oncology Group Late Effects Screening Guidelines. 
  • An end-of-treatment Care Summary, completed by the treating institution, and available to the survivor, that can be securely shared with other healthcare providers at the direction of the survivor. This Care Summary is used to generate the individualized recommendations for each survivor. 
  • Individualized survivor education resources customized to the needs of each patient based on their disease and its treatment. These will be readily accessible to the survivor and their healthcare provider(s). The information provided helps empower the survivor and is designed to facilitate both survivor and healthcare provider follow-up compliance. 
  • Other features that have been identified as important to survivors and healthcare providers, including an online survivor forum and a section for survivor news and stories.

The goal of this initiative is to develop a national resource that will serve as the model for meeting the needs of cancer survivors. The implementation, testing, and modification of the Passport for Care® application will be an iterative process with the objective of producing an effective tool that optimally serves the healthcare information needs of this growing population. In using the Passport for Care® application, the survivor will have complete control over access to their medical follow-up information. It empowers the survivor to actively partner with his or her caregiver in managing their long-term follow-up.

The Passport for Care® application was successfully implemented in the in the Long-Term Survivor Clinic at the Texas Children's Cancer Center in November 2007, and is currently in over 85 other clinics throughout the United States. Over 50% of the domestic Children’s Oncology Group member institutions are undergoing the implementation process and the Passport for Care® application has been used with over 6,000 patients to provide care summaries and guidelines to practitioners in the clinics.

This initiative has been furthered through the generous support of:
 

The Passport for Care® application is now available to Children’s Oncology Group (COG) member institutions

To meet the needs of childhood cancer survivors, the Passport for Care® application was developed by Texas Children’s Cancer Center and the Center for Collaborative and Interactive Technologies at Baylor College of Medicine. It is a database-driven, Internet-based decision support tool for use by healthcare providers and survivors. The Passport for Care® application provides healthcare providers access to survivors’ personal medical information and guides long-term follow-up screening for late effects of childhood cancer to monitor risk for chronic medical illnesses. Currently in use in over 85 clinics, it is available at no cost to COG member institutions. If you are interested in learning more about the Passport for Care® application, please contact Marc E. Horowitz, MD, (mehorowi@txch.org) or Susan Krause, (skrause@txch.org).