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Developing Automated Alternatives for Eliciting Patient Information for Breast Cancer Surveillance-Phase 1

Grant #: Supplement
PI Name: Taplin S
Title: Developing Automated Alternatives for Eliciting Patient Information for Breast Cancer Surveillance-Phase 1
Institute: National Cancer Institute

There is a growing need to automate survey collection and centralize health information that serves the needs of multiple care providers. Surveys provide a source of health information but contain both static and changing information. People seeking care have an interest in providing statis information like date of birth on one occasion rather than repeating it each time that information is sought. However, some information like family history of cancer changes, and that needs to be sought repeatedly. Both providers and people seeking care have an interest in rapid survey completion that facilitates rather than hinders their progress. Both providers and patients also want it available to all those involved in someone's care. The challenge is to accumulate a full set of information and update the parts that will change so that there is a valid, accurate source of information for people who need to know and care for an individual.

One context for such a system is breast cancer screening surveillance. This is a national effort to link screening mammography data to cancer date and use it to evaluate the performance of the technology A standard set of survey questions has been proposed based on the experience from 8 sites around the United States. The Breast Cancer Surveillance Investigators designated the survey for use in the course of usual care. That usual care process demands efficient approaches because women's movement through a mammography facility will affect the number of women that can be seen.

Purpose: The long-term goal of this effort is to create a computer-based system that will allow automated collection of accurate survey data that can be kept confidential but accessible to those who need it. This means that the survey data must be exportable from the application in a form that can be adapted to a variety of data systems. The purpose of this project is to create a prototype automated survey system that efficiently gathers patient information and allows easy updating of existing data in the course of usual care.

The specific aims of this pilot study are:

  • To evaluate the hardware and software options for a data collection system that can interface with HIPAA-compliant systems and would allow individuals to validate currently collected information and update those items that could change.
  • To evaluate the nature and extent of changes in responses when the system prompts an individual with previously collected data, compared to collecting the information de novo at each interview point.
  • To provide survey software and system description to the NCI in a form that can be tested for acceptability.
  • The benefits expected to be gained from developing this automated data system include a method of data collection that allows the patient to view previous survey answers, permits updates in real-time, presents a user-friendly process for the patient, and makes exported data available to automated information systems in a timely fashion.

The scope of this project is limited to finding solutions specifically for breast cancer care. However, to be generally useful, the solution must allow application to other data collection efforts that depend on survey data. The primary outcome of this study consists of the development of a software application that allows collection of breast cancer risk and medical data. The application will be available in a form for use throughout the Breast Cancer Surveillance Consortium.