Government Regulatory Agencies and Healthcare Policy Initiatives Pathway

Government Regulatory Agencies and Healthcare Policy Initiatives

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Cool Timeline

2009

Pharmaceutical Companies attempt to engage with rheumatology patients

Pharmaceutical Companies attempt to engage with rheumatology patients

“Can I have a few moments of your time?” Around 2009, pharmaceutical companies began realizing the benefits of patient involvement in research, but legal barriers minimized engagement. At this time, pharmaceutical companies did not have official patient-engagement branches, so outreach was often limited to patients they could access online (bloggers,..Read More

2010

Experience working with patients in research leads to guidance for best practices

Experience working with patients in research leads to guidance for best practices

As a few years have passed since patient engagement in rheumatology began, guidance and recommendations are developed based on lessons learned. 2010: Patient Research Partner (PRP): As a result of patient-researcher collaboration with Outcome Measures in Rheumatology  (OMERACT) OMERACT is a global community for the development of Core Outcome Sets..Read More

Concepts of Patient Involvement (CoPI) change the paradigm for patient engagement in research

Concepts of Patient Involvement (CoPI) change the paradigm for patient engagement in research

  2011: Strategy for Patient Oriented Research (SPOR): Canadian Institutes of Health Research (CIHR) Canadian Institutes of Health Research played a prominent role in the launch, implementation, and oversight of SPOR, but represents only one in a multitude of partners.cihr-irsc.gc.ca.html establishes a Strategy for Patient-Oriented Research SPOR is a collaboration of..Read More

Opportunities for patient involvement in advisory panels expands

Opportunities for patient involvement in advisory panels expands

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..Read More

As the value of patient engagement evolves, so does guidance and outcome focus

As the value of patient engagement evolves, so does guidance and outcome focus

As the decade progresses, international efforts to expand the patient voice in rheumatology research continues. As a result, more programs that focus on patient-reported needs, guidance for involving patients in research, and reports that assess patient involvement emerge. 2013: Patient-Centered Outcomes Research Institute (PCORI)PCORI is an independent nonprofit, nongovernmental organization..Read More

Formal training of patients to be more active in research begins with EUPATI

Formal training of patients to be more active in research begins with EUPATI

● 2012: The European Patients’ Academy (EUPATI)The European Patients’ Academy (EUPATI) was formed as a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. The Academy was started, developed, and implemented as a flagship project of the Innovative Medicines..Read More

Focus on expanding PCOR leads to the established of collaborative communities – United States

Focus on expanding PCOR leads to the established of collaborative communities – United States

2013: PCORnet PCORnet is a national resource that offers the kind of research ecosystem that has long been pursued: a fully integrated network where vast, highly representative health data, research expertise, and patient insights are built-in and accessible from the very start. The infrastructure of PCORnet is well established, meaning..Read More

Young People Help Shape Rheumatology Research

Young People Help Shape Rheumatology Research

Young people need a voice too! The evolution of patient engagement in rheumatology research expands to ensure the voice of the younger patients is counted. 2014: EULAR Young PAREYoung PARE aims to improve the quality of life of young people (18 to 35 years old) with rheumatic and musculoskeletal diseases (RMDs)..Read More

Establishment and Evolution of the Patient-Focused Drug Development Initiative

Establishment and Evolution of the Patient-Focused Drug Development Initiative

Patient-focused drug development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. The primary goal of patient-focused drug development is to better incorporate the patient’s voice in drug development and evaluation 2012: The Food..Read More

Patient engagement in research is here to stay – the growth of patient-centered research conferences

Patient engagement in research is here to stay – the growth of patient-centered research conferences

Blended Engagement Conferences 2014: Since the launch and success of patient-engagement conferences in the United States and Europe in 2014, stakeholders in search of information to help improve collaboration efforts has surged. However, most include sessions that merge various disease groups, who utilize different Concepts of Patient Involvement (CoPI) Concepts..Read More