(258) Stanford-NIH Pain Registry: open source platform for large-scale longitudinal assessment and tracking of modern patient-reported outcomes

The Institute of Medicine (IOM) in Relieving Pain in America report (2011) called for the development of national patient registries to support the development of learning healthcare systems. In particular for the management of patients with chronic pain, the IOM has called for national patient outcome registries that can support point-of-care decision making and large-scale assessment of safety and effectiveness of therapies. In answer to this, we developed the Stanford-NIH Pain Registry, an open-source web application to assess patients and to support clinic staff with integrating the pain registry into the clinic workflow. Patient assessment features are designed for use on mobile devices with touch interfaces (smart phones and tablets), while also supporting desktop web browsers. Key technologies used include Java, Oracle database, Google Web Toolkit, and jQuery Mobile. Since roll-out in August 2012 and the subsequent slow ramp-up, over 2,700 unique patients have completed surveys, with over 6,000 assessments overall. Surveys were completed at home via email link, or at the Pain Clinic, using computers, iPads, Android tablets, and Chrome notebooks. In conclusion, we have created an open source, extensible platform that enables rapid definition and deployment of data capture tools. This represents a successful partnership between the NIH and Stanford with funding from most of the NIH Institute Directors. Future works include the expansion of survey items, into additional disease areas, dissemination of code, as well as networked registry build-out. The Institute of Medicine (IOM) in Relieving Pain in America report (2011) called for the development of national patient registries to support the development of learning healthcare systems. In particular for the management of patients with chronic pain, the IOM has called for national patient outcome registries that can support point-of-care decision making and large-scale assessment of safety and effectiveness of therapies. In answer to this, we developed the Stanford-NIH Pain Registry, an open-source web application to assess patients and to support clinic staff with integrating the pain registry into the clinic workflow. Patient assessment features are designed for use on mobile devices with touch interfaces (smart phones and tablets), while also supporting desktop web browsers. Key technologies used include Java, Oracle database, Google Web Toolkit, and jQuery Mobile. Since roll-out in August 2012 and the subsequent slow ramp-up, over 2,700 unique patients have completed surveys, with over 6,000 assessments overall. Surveys were completed at home via email link, or at the Pain Clinic, using computers, iPads, Android tablets, and Chrome notebooks. In conclusion, we have created an open source, extensible platform that enables rapid definition and deployment of data capture tools. This represents a successful partnership between the NIH and Stanford with funding from most of the NIH Institute Directors. Future works include the expansion of survey items, into additional disease areas, dissemination of code, as well as networked registry build-out.