The Journey Project

1

• Facilitate access to health information for
  cancer patients
• Increase patients ability to navigate the health
  care system
• Attend to patients affective needs in regards to
  their condition

• Learning about the health care system is
  complicated
• Due to the variety of providers involved in one
  cancer patients care, learning the many
  resources and options available took four months
  longer than anticipated
• Finding people willing to explain the business
  side of health care was difficult. Only a few
  individuals could explain the many variations of
  payers and the process to cover non-insured
  patients
• Working across disciplines required negotiating
  expectations, goals, and boundaries such as
• Setting clear project scope boundaries given the
  large need for services
• Communicating clear expectations about what
  information would be provided to address the
  variety of concerns of the partners
• Relationships with patients and health care
  providers directed the project
• Time was needed with each patient to determine
  the type of information to provide
• Through building trust relationships with health
  care providers, the project could change as
  necessary to meet their multiple needs as well as
  the patients

Massey Cancer Research Center, VCU Medical Center

• Identified areas of common interest with
  potential partners within the health care system
• Reviewed health information needs of cancer
  patients
• Determined a tool (notebook) was needed to
  organize and manage patients health care
• Used patient experiences and health care
  providers expectations to create notebook
  content
• Created notebook and elicited feedback about it
  through interactive process with providers

• Negotiated with clinic physician and nurse about
  project procedures
• Determined patient interaction process
• Prepared customized resources for each patient
  visit
• Adjusted process as new experiences presented
  new needs of patients and staff

• Better able to locate relevant health care
  financial information
• Capable of getting more information about
  treatment options
• Increased understanding of health condition
• More familiar with health information resources
  within the medical center