Patients Know Best (PKB) is helping to bridge a critical gap in the healthcare system by allowing patients to work directly with research teams. From the beginning at Great Ormond Street Hospital the patient, the care-giver and the clinician were using the PKB system to bring their information and views to clinical decisions. Now, researchers are starting to use patient-control to facilitate research.
Today in the United States, we are working with talented groups who share this view in connecting all those parties together. The focus is on Inflammatory Bowel Diseases (IBD), complex diseases that affect approximately 1.2 million individuals in the US. Crohns and Colitis Foundation of America (CCFA), a nonprofit, volunteer driven organization, has been at the forefront of IBD research. Other partners that we are working with include Crohnology.com, a global network of patients with Crohn’s Disease that provides real time data, Validic, a mobile health company that provides a platform for the integration of mobile health devices, UNC School of Medicine, and White River Computing, a data analytics and integration company, and a selected governance group of engaged and knowledgeable IBD patients. The health data network that we will build together is supported by and included in the overall Patient-Centered Outcomes Research Institute (PCORI) here in the US. We encourage you to click on their sites for more information.
This project is based on a mechanism of research that is patient-centered. These are the following goals(press release):
- Enhance the network expansion, diversity, and retention of CCFA Partners participants
- Build a robust network community, including patient governance structures that allow greater involvement of patients in research
- Expand the CCFA Partners database to include electronic health records, data from health apps and devices, and biological samples
- Create a customized, yet scalable and adaptable, distributed data network (i.e. virtual database) by repurposing NASA-built technology
- Develop and test patient- and provider-focused tools that utilize individual patient data to improve health behaviors, healthcare decisions and outcomes
- Further engage the scientific community through open collaboration and data sharing
- Rapidly disseminate new knowledge to patients, enabling them to improve their health
Patients are no longer on the sidelines of their own health, diseases, and now clinical research. While PKB will start with IBD with CCFA, the bigger picture is for this network to integrate with the rest of the National Patient-Centered National Clinical Research Network (PCORnet), which aims
to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs and make it easier to launch new studies. It will focus research on questions and outcomes useful to patients and those who care for them.