ABSTRACT
The feasibility and acceptability of computerized screening and patient-reported outcome measures have been demonstrated in the literature. However, patient-centered management of health information entails two challenges: gathering and presenting data using "patient-tailored" methods and supporting "patient-control" of health information. The design and development of many symptom and quality-of-life information systems have not included opportunities for systematically collecting and analyzing user input. As part of a larger clinical trial, the Electronic Self-Report Assessment for Cancer-II project, participatory design approaches were used to build and test new features and interfaces for patient/caregiver users. The research questions centered on patient/caregiver preferences with regard to the following: (a) content, (b) user interface needs, (c) patient-oriented summary, and (d) patient-controlled sharing of information with family, caregivers, and clinicians. Mixed methods were used with an emphasis on qualitative approaches; focus groups and individual usability tests were the primary research methods. Focus group data were content analyzed, while individual usability sessions were assessed with both qualitative and quantitative methods. We identified 12 key patient/caregiver preferences through focus groups with 6 participants. We implemented seven of these preferences during the iterative design process. We deferred development for some of the preferences due to resource constraints. During individual usability testing (n = 8), we were able to identify 65 usability issues ranging from minor user confusion to critical errors that blocked task completion. The participatory development model that we used led to features and design revisions that were patient centered. We are currently evaluating new approaches for the application interface and for future research pathways. We encourage other researchers to adopt user-centered design approaches when building patient-centered technologies.
Subject(s)
Consumer Health Information , Internet , Neoplasms/therapy , Patient Outcome Assessment , Quality of Life , Computers/statistics & numerical data , Focus Groups , Humans , Neoplasms/diagnosis , Patient Education as Topic , Research DesignABSTRACT
The DHAIR software system is a database-driven, web-based survey platform. It implements the delivery of survey instruments in packaged assessments, creation and editing of those assessments, researcher access to the results of the survey application, and a flexible authorization framework.
Subject(s)
Health Surveys , Software , Data Collection/methods , InternetABSTRACT
We have implemented a customized Internet decision support system designed to engage men in the decision-making process for the management of localized prostate cancer. The system is delivered to patients in the patient education room of the UWMC Prostate Oncology Center. The system interactively guides the patient through a series of surveys, and delivers multi-media interaction modeling and decision support output, both of which are customized for the patient's preferences. The system is currently implemented on an open source platform.
Subject(s)
Internet , Patient Education as Topic/methods , Patient Participation , Prostatic Neoplasms/therapy , Decision Making , Humans , Male , Patient SatisfactionABSTRACT
Healthcare organizations are complex systems and well served by efficient feedback mechanisms. Many organizations have invested in data warehouses; however there are few tools for automatically extracting and delivering relevant measures to decision makers. This research study resulted in the design and implementation of an intranet dashboard linked to a data warehouse.
