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 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 informative webinars; the first was in September 2015 and provided an overview of the program and discussed the needs assessment. The public was introduced to BD4P and given opportunities to provide feedback if they had not already done so. Prior to the first workshop, another webinar was held in August 2016.