Big Data for Patients (BD4P) training gives patient advocates a basic understanding of the science of big data so they can participate more fully and effectively in related initiatives. The program empowers patients and advocates by enhancing data science literacy and critical appraisal skills. The program aims to develop 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 learn to communicate on big data issues with policy makers, scientists, physicians, and other patients.
Program development 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 on program curriculum, format, and delivery. Information was gathered from a broad range of stakeholders to help project staff identify interests and priority topics for the training program. The results identified many subjects of interest, but the three topics that were identified as “most important” to include in the BD4P curriculum were: general use of health data, types of data, and ethical issues in big data. These issues, along with many others, were incorporated into the final BD4P curriculum and workshops.
To reach an even broader audience and gather more comprehensive data, BD4P staff also hosted multiple webinars to discuss the needs assessmet, overview the program and gather stakeholder feedback.