Big Data for Patients (BD4P) is a data science training program that seeks to give patient advocates a basic understanding of the science of big data to enable them to participate more fully and effectively in big data initiatives. The program will serve to empower patients and advocates by enhancing data science literacy and critical appraisal skills. A primary goal of this program is 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 will be equipped with the tools necessary to communicate on big data issues with policy makers, scientists, physicians, as well as other patients. Read more about the program below:Program Background
The 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 RUF’s “Big Data for Patients” (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
Based on RUF’s work with scientists and clinicians and involvement of patient advocates in our projects and programs, we know that 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. BD4P will:
- 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.
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.
Work in the first two years of BD4P can be separated into 5 phases that cover development, design, and implementation of the program. There will be opportunities throughout for stakeholder involvement, including (but not limited to) potential roles as advisors, steering committee members, workgroup members, speakers, and instructors.
Longer-term objectives for BD4P include expanding the program training to additional audiences (e.g., clinicians and translational science researchers) and additional content areas (e.g., understanding risk-benefit analysis, clinical trial design, regulatory review) that would complement RUF’s broader regulatory science education agenda.
For full details on the BD4P Program development, click here.
The BD4P Steering Committee provides strategic guidance on and oversight of BD4P operations. The BD4P Steering Committee will work with RUF Board, project staff, and others to ensure a focus on the long-term vision of the project and its deliverables. Duties include reviewing and approving the BD4P charter and program development and implementation plan, as well as reviewing partnership and collaboration proposals that are submitted to the program. See full list of BD4P Steering Committee Roles and Responsibilities. Nominations for this multi-stakeholder advisory group were taken via an open process. See full list of BD4P Steering Committee members.
Partnerships and Funding
The BD4P Program will be developed through 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 input on program design, to actually taking the training program and providing feedback to evaluate the program and make improvements. Stakeholder meetings will be held over the course of program development. Additionally, RUF is actively exploring collaboration opportunities in support of this effort. To find out how you can get involved, contact us at BD4P@ReaganUdall.org.
- June 2015 – RUF has been approved for a Eugene Washington PCORI Engagement Award by PCORI, an independent, non-profit research funding organization, to support the launch and implementation of the BD4P program. RUF is working on raising additional funding in support of this effort.
- July 2016 – Celgene Corporation – charitable contribution to support program development and implementation.
- October 2016
- Celgene Corporation – charitable contribution to further support program development and the training workshop.
- Kaiser Institute for Health Policy – grant to support the training workshop.
- American Society of Clinical Oncology – grant to support the training workshop.
- December 2016 – PatientsLikeMe – grant to support the training workshop.
For additional information, please visit the BD4P program resources page. This page will be updated with the latest program materials, reports, and other media.
Please see the Training Workshop page for details on upcoming sessions, including application information.
Recent Updates & Upcoming Events
We will be hosting a BD4P Stakeholder Webinar on 2/1/17 to provide an update to the BD4P program and giving an overview of the next steps in workshop development. There will also be a special presentation by the NCI Office of Advocacy Relations about how they are using educated patient advocates in their work. For more information, or to register, click here.
The first BD4P Training workshop was held October 13-15 in Washington, DC. Check the Training Workshop page and program resources page for updated information from the workshop.
A Stakeholder Webinar was held on 8/16/16 to provide details about the BD4P program and information about applying to the first training workshop. Click to view slides or the recording of this webinar.
Our BD4P Stakeholder meeting was held on Thursday, June 9, 2016, to get stakeholder feedback on the draft curriculum, program development and use of case studies. The meeting webcast and presentation will be posted on our website soon.
Project status: Ongoing