The still new and emerging field of data science (Big Data) is rapidly evolving, and the methods of accessing, integrating, and interpreting data are becoming increasingly complex. Big Data efforts – including the National Institutes of Health’s (NIH) Big Data to Knowledge (BD2K) program, the FDA’s Sentinel Initiative, and the National Patient-Centered Clinical Research Network (PCORnet), which is funded by the Patient-Centered Outcomes Research Institute (PCORI) – are working to gather data from various sources and formats such as electronic health records (EHRs), electronic medical records (EMRs), patient reported outcomes (PROs), and physicians’ notes to help inform and improve patient care.
The main goals of the BD4P Program are the:
Comprehension of key Big Data concepts and uses
Awareness of the promises, limitations, and potential impacts on patients
Understanding of how patients can impact and shape Big Data research, institutional policy, and funding decisions
Development of critical thinking skills to evaluate and discuss Big Data issues
Creation of knowledge to allow you/your organizations to offer an educated perspective on issues related to Big Data
Many people find Big Data difficult to navigate. Without training in this topic, patients and advocates may not feel comfortable or prepared for participating in this work or its design and evaluation. This is not only a setback for patient engagement, it is also a detriment to the research work. Big Data in medicine is patient data, so patient participation is vital to creating beneficial and patient-centered research initiatives.
BD4P will bring together multiple stakeholder groups to leverage collective knowledge, technical expertise, data, funding, and other resources to create a state-of-the-art patient training program focused on the opportunities and challenges posed by Big Data.
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, its challenges, its potential impact on patients, and how patients can use this knowledge.
Equip trainees with the tools necessary to communicate on Big Data issues with policy makers, scientists, physicians, and other patients.
Serve as a forum for networking not only between patients, but also between patients and leaders in data science who will be teaching the courses and active in the community of practice.
Given the high profile of health research and initiatives using Big Data, and the growing efforts to make healthcare and medical research more patient-centered, it is critical that patients have a voice and active role in this work. It is still not completely understood how Big Data research will impact patient healthcare and medical decision making, but BD4P presents an opportunity to get ahead of the curve and ensure that patients are adequately informed and prepared to participate in this work.
Process and Timeline
Development of the program will be a fully collaborative process, with patients and key stakeholders involved in shaping the program every step of the way—from prioritizing topics for program content and having input on program design, to actually taking the training program and providing feedback to evaluate the program and make improvements. This will ensure that the focus is not only on the impact of Big Data on patients, but also the impact that patients can have on Big Data research.
Where We are Now
The development of the training program began on 1st July 2015. Nominations for the BD4P Steering Committee are commonly being sought, which will provide strategic guidance on and oversight of BD4P operations.
Input on BD4Pprogram development is being sought through an online needs assessment survey. This survey will help us identify stakeholder interests and priority topics for the training program. Because the program is being developed collaboratively with patients and stakeholders, input from these groups is essential. Use the below link to let them know what you think should be included in BD4P program development: