Big Data for Patients (BD4P) was a training program to give patient advocates a basic understanding of the science of big data so they can participate more fully and effectively in related initiatives. The program hoped to empower patients and advocates by enhancing data science literacy and critical appraisal skills. Programatic aims included developing a community of informed and empowered advocates who understand what big data is, how it is being used in research and medicine, its promises and limitations, the challenges, the impact on patients, and how they can use this knowledge. Trainees were shown how to communicate on big data issues with policy makers, scientists, physicians, as well as other patients.
Program work began in July 2015 with a Eugene Washington PCORI Engagement Award to support the development and implementation of the project. BD4P initiation was separated phases covering development, design, and implementation of the program – including a needs assessment/landscape report, curriculum and resources, and training workshops.
One way that the Foundation collected initial public input on program development was through an online needs assessment survey conducted from August-October 2015. The assessment determined knowledge gaps and solicited input