- 2011: PCOR – Patient-Centered Research Outcomes (PCOR)Established by PCORI, this research approach is a new form of comparative effectiveness research (CER) that considers the needs and perspectives of patients and stakeholders by engaging them throughout the entire research process. www.pcori.org is established by the Patient-Centered Outcomes Research Institute (PCORI)The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
www.pcori.org and enlists patients to participate in clinical research grant evaluationsPCORI also engage the public through its own institutional activities, such as Merit Review, which includes patients and stakeholders as reviewers of research applications, ensuring dollars spent are aligned with research outcomes that are meaningful to the patient population. United States View other PCORI projects that included rheumatology patients in research.
- 2012: National Institute for Arthritis and Musculoskeletal and Skin diseases (NIAMS)The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.
www.niams.nih.gov adds one patient to the grant application review team.
- 2012: The US Department of Defense (DoD) The Department of Defense is America’s largest government agency. With our military tracing its roots back to pre-Revolutionary times, the department has grown and evolved with our nation. Our mission is to provide the military forces needed to deter war and ensure our nation’s security. www.defense.gov created the Peer Reviewed Medical Research Program (PRMRP)PRMRP is one of 35 research programs managed by the Congressionally Directed Medical Research Programs (CDMRP). Patients/survivors/individuals living with the diseases and conditions with research programs managed by the CDMRP were incorporated into all aspects of the program cycle with equal voice to include research focus, investment strategy, and programmatic review in 1993, and into peer review in 1995.
cdmrp.army.mil adds patients/individuals living with rheumatoid arthritis and osteoarthritis as peer reviewers starting in 2012 and lupus was added in 2015. In 2017, lupus became its own research program within the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DOD) program. that receives congressional appropriations explicitly for. biomedical research in specific, congressionally identified. health matters. cdmrp.army.mil However, patients/individuals living with lupus originally participated in peer review starting in 2005 and continue doing so in the Lupus Research Program.
- 2013: Establishment of Foundation for Research in Rheumatology (FOREUM)FOREUM Foundation for Research in Rheumatology is devoted to promote research in rheumatic and musculoskeletal diseases (RMDs) as an independent research funding body in rheumatology research. Basic and applied research of highest quality is supported to reduce the burden of disease for people with RMDs.
www.foreum.org, supported by the European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org, involves patients in the government of the foundation as well as in the review of research grant applications.
- 2013: The Patient-Centered Outcomes Research Institute (PCORI)The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions.
www.pcori.org established the Advisory Panel for Patient EngagementBy inviting the patient and caregiver community to help generate research questions, review research proposals, assist in the conduct of research, help disseminate information and evaluate impact, patient engagement ensures authentic patient-centeredness in the research process. www.pcori.org which is an advisory body that provides input and recommendations to PCORI Board of Governors, Methodology Committee, and staff to help plan, develop, implement, improve, and refine efforts toward meaningful patient-centered research. Panel members assure the highest patient engagement standards and a culture of patient-centeredness in all aspects of its work.
- Most pharmaceutical companies realize the need for an internal patient engagement department. The use of Patient Advisors becomes common.
CoPI: Advisory panels , consumer reviewers, Patient-Centered Outcomes Research (PCOR)
Context: Assessing grant applications, Research & Development, Patient-Reported Outcomes (PROs)