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Cool Timeline
Patient Engagement in the Regulatory Process – Tools Emerge
Patient testimony in the regulatory process expands in the second half of this decade and the Food and Drug Administration (FDA)Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits..Read More
Pharmaceutical companies get more involved in patient research collaborations
By 2015, most pharmaceutical companies had formed "patient engagement" departments and regularly enlisted the help of Patient Advocates to serve on Advisory Panels, summarizing the patient experience on behalf of the entire population. In addition to recognizing a need to include a more realistic patient sample, efforts to include patient..Read More
Rheumatology Scientific Meetings Continue to Unite Researchers, Rheumatologists, and Patients
While 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,..Read More
the ACTion Council is established
Led by patients who have helped shaped patient engagement in this space, the ACTion CouncilLearn more about the ACTion Council at www.rheumactioncouncil.org unites a global representation of key stakeholders in the rheumatology research community to record the history of patient engagement and track its continued expansion so efforts are not..Read More
Additional frameworks and recommendations for including patients in research
2018: INVOLVEINVOLVE was established in 1996 and funded by the National Institute for Health Research (NIHR) to support active public involvement in National Health Services (NHS) public health and social care research.As a national advisory group, the role of INVOLVE is to bring together expertise, insight, and experience in the..Read More
Precision Medicine in Rheumatology is on the Horizon
2017: While Precision Medicine (PM) Precision Medicine is a medical approach that proposes to prevent and treat disease based upon a person’s unique genetic makeup and their lifestyle habits. Precision medicine, the ability to accurately measure specific predictors of patient outcomes is implemented in personalized clinical care. research has progressed..Read More
Establishing measurements of effective patient engagement
2018: Arthritis Research Canada (ARC)ARC was created in 2000 in recognition of the tremendous potential that research can bring to arthritis treatment in Canada, and indeed, the world. Arthritis Research Canada has earned international attention as a leading arthritis research environment. We have built a strong multi-disciplinary research team of..Read More
Additional frameworks, recommendations, and reviews
2015: Outcome Measures in Rheumatology (OMERACT)OMERACT is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group.https://omeract.org publishes recommendations for collaborative research Cheung PP,..Read More
Value-Based Health Care
2019: International Consortium for Health Outcome Measurement (ICHOM)International Consortium for Health Outcomes Measurement (ICHOM) aims to unlock the potential of value-based healthcare by defining global Standard Sets of outcome measures that matter most to patients and driving adoption and reporting of these measures worldwide to create better value for all..Read More
Compensating Patient Partners – Guidance Emerges
Patients, care partners, and patient groups involved in patient engagement activities should be compensated as lived experience experts. Over the years, as more patient voices in research have emerged, various levels of expertise have also evolved. What should you pay these engagement partners for participation in your project? 2019:..Read More