Passport for Care (SM)
Passport For CareSM (PFC) is an innovative healthcare project developed by researchers at Baylor College of Medicine that addresses the need to provide patients and survivors of chronic illnesses with increased access to their medical information and healthcare guidelines. The PFC is an interactive Internet resource that provides the user accurate, timely and individualized healthcare information on a “just-in-time” basis. The Passport For Care initially is being developed for survivors of childhood cancer. Once completed and evaluated, it will be extended to encompass the millions of adult cancer survivors nationwide. It is anticipated that eventually the PFC could evolve into Passports that would address the needs of individuals with a wide range of medical conditions.
The initial PFC is being developed in collaboration with the Children’s Oncology Group (COG) and the national Childhood Cancer Survivor Study to address the healthcare information needs of the estimated 300,000 long-term survivors of childhood cancer in the United States. The Institute of Medicine and 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 PFC is an interactive Internet resource that addresses the need for accurate and timely healthcare information for long-term survivors of childhood cancer. The PFC website has been designed to contain the following elements:
- A Guidelines Generator that dynamically assembles recommendations for care individualized to each survivor according to his or her treatment history. The recommendations, are based upon the recently developed COG Late Effects Screening Guidelines.
- An end-of-treatment summary Care Summary, completed by the treating institution, and available to the survivor, that can be securely shared with providers at the direction of the survivor. This Care Summary is used to generate the individualized recommendations for each survivor.
- Individualized survivor education resources that are customized to the needs of each patient based on their disease and its treatment. These are 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 provider follow-up compliance.
- Other features that have been identified as important to survivors and providers, including an online survivor forum and a section for survivor news and stories.
- System Security features that ensure privacy and confidentiality.
In using the PFC, the survivor will have complete control over access to their medical follow-up information. The PFC empowers the survivor to actively partner with his or her caregiver in managing their long-term follow-up.
The goal of this project is to develop a national resource that will serve as the model for meeting the needs of cancer survivors. Initially, the PFC will be systematically studied in a population of survivors of childhood cancer and their caregivers to determine whether use of the PFC will improve physician and survivor knowledge of, and compliance with, the best available surveillance and follow-up recommendations. The implementation, testing and modification of the PFC will be an iterative process with the eventual goal of producing an effective instrument that optimally serves the healthcare information needs of this growing population.
The PFC was successfully implemented in the in the Long-Term Survivor Clinic at the Texas Children's Cancer Center in November, 2007 and has been used with more than 300 patients to provide care summaries and guidelines to practitioners in the clinic. The initial implementation was under an institutional review board approved feasibility study. Implementation in the clinics of our working group members will begin in the near future.
This project has been furthered through the generous support of:
- Abell-Hanger Foundation
- Joan and Stanford Alexander Foundation
- Lance Armstrong Foundation
- Harry W. Bass Foundation
- Hearst Foundations
- Huffington Foundation
- Meadows Foundation
- Ronald McDonald House Charities of Greater Houston/Galveston
- Ronald McDonald House Charities
- Ronald McDonald House Houston
- Texas Cancer Council
- Private Individuals