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This training was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award, with additional sponsorship from the American Society of Clinical Oncology (ASCO), the Biotechnology Innovation Organization (BIO), Celgene Corporation, Kaiser Permanente and PatientsLikeMe. It concluded in 2017, with the intent that patients and advocay groups would use the tools and resources developed and shared on this site. Acknowledgement of any resources adapted for use by others should include the following disclosure: This training was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (1492-RUF). An example of how patients and advocacy groups can use BD4P tools was the Susan G. Komen symposium and conference called Big Data for Cancer Patients.

The Foundation does not provide staffing or information other than the resources archived on this site. However, other big data research iniatives of interest to the BD4P community include:

Evaluation of Clinical Care and Other Products:

PCORnet -- Information from http://www.pcornet.org/

PCORnet is a national network for conducting clinical effectiveness health research. It uses data, such as patient-reported outcomes, electronic health records, and insurance claims data, that is gathered from individual networks around the country. This data may be used in conjunction with patient-supplied data that is gathered using methods from mobile devices, registries, etc. The purpose of PCORnet is to increase the effectiveness of health research through a central warehouse of health data collected from patients and office visits. It is patient-driven and utilizes patient input for decision-making and research priorities. PCORnet uses a Common Data Model (CDM) to organize the data collected from disparate sources. Partner networks use the CDM to create a more consistent and efficient platform. 

Basic Science:

Big Data to Knowledge (BD2K) -- Information from https://datascience.nih.gov/bd2k/about

This NIH initiative's focus is on supporting the research and development of new and novel methods and tools that increase the integration and use of big data in biomedicine. The program states four major aims to enhance the use of biomedical big data:

  • Make biomedical big data discoverable, accessible, and citable
  • Conduct research and create methods for analysis
  • Improve training in the development and use of big data science tools and procedures 
  • Support an environment that encourages innovation in biomedical big data

BD2K funds research and education initiatives, including training and methods and tools development, which promote the use of big data in advancing biomedical research and innovation. 

Big Data for Breast Cancer

Susan G. Komen hosts symposiums and conferences on

Precision Medicine Initiative (PMI)
Information from https://www.whitehouse.gov/precision-medicine

The PMI aims to transform the traditional methods of uniform diagnosis and treatment. Precision medicine takes into account individual aspects of a person’s genetics, environments, and habits to tailor medicine and treatments to best fit each person. In theory this gives providers and patients the tools they need to result in better outcomes. The PMI includes research, technology, and policy initiatives and will involve collaboration with public and private entities. Initial funding is provided to the National Institutes of Health, the Food and Drug Administration, and the National Coordinator for Health Information Technology to support research, development, and innovation. The overall objectives of the PMI are to develop better cancer treatments, create a national cohort of volunteers who want to provide their data for research, modify the regulatory landscape if needed, and strengthen public-private partnerships to accomplish these goals. 

An important research goal is to develop a cohort of at least one million Americans to provide their data for PMI research purposes. This cohort databse will be patient-centered and focus on supporting research for new knowledge and treatment methods to reduce disease and improve health. The cohort will be racially, ethnically, and geographically diverse so it represents the US population. The cohort will eventually focus on treatment for diseases such as rare diseases, Alzheimer’s, and heart disease, and develop new standards of research to promote open and accountable data sharing. 

 

The initial focus of the PMI is cancer. NCI is supporting the PMI through expanding clinical trials, researching drug resistance, developing new laboratory models to understand research and treatments, and creating a national database of clinical and outcomes data for scientists, patients, and providers. 

Medical Product Safety:

Innovation in Medical Evidence Development and Surveillance (IMEDS)
Information from http://imeds.reaganudall.org/

IMEDS is a program within the Reagan-Udall Foundation for the FDA that aims to help the FDA, regulated industry, and clinicians improve patient care and the safety of medical products. IMEDS uses insurance claims data for drug safety assessments, while leveraging the Sentinel CDM and other tools to help answer questions about the safety and effectiveness of drug interventions.