General Terminology

Advisory Panels (also called Advisory Councils)

• See Pathway Stop 1996 – INVOLVE Is Established To Support Public Involvement In Research (PIR) Year 1996
• See Pathway Stop 1998 – Patient Research Collaboration In Rheumatology Begins In Canada Years Years 1998, 2000, 2001
• See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2006
• See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2008
• See Pathway Stop 2009 – Pharmaceutical Companies Attempt To Engage With Rheumatology Patients Year 2012
• See Pathway Stop  2010 – Young People Help Shape Rheumatology Research Years 2014, 2016 
• See Pathway Stop 2010 – Opportunities For Patient Involvement In Advisory Panels Expands Years 2012, 2013
• See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Years 2015, 2016, 2017
• See Pathway 2015 – Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015
• See Pathway 2020 – Pharmaceutical Companies Expand The Role Of The Patient Advisory Panel Year 2020
• See Pathway 2020 – Rheumatology Registries And Research Front And Center Year 2020

Conference Participant 

• See Pathway 1994 – EULAR Congress Inclusion Of Patients, Engagement Pillar Year 1994
• See Pathway 2002 – Patients Are Invited To Join The Rheumatology Research Team Year 2002 [OMERACT]
• See Pathway 2008 –EULAR PARE Established Year 2008
• See Pathway 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Year 2021 [GRAPPA]
• See Pathway 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients Years 2016 [American College of Rheumatology], 2017 [EULAR]
• Pathway Stop 2020 – Health Equity And Diversity, Front And Center Year 2020 [COVID19 Global Rheumatology Alliance, Research Abstract]

Consumer Reviewer (may also be called a Peer Reviewer or Consumer Expert) is a person that has experience of the disease or intervention and helps review research materials.

• See Pathway 1993 –Patient Engagement In Rheumatology Begins Year 1993 [Cochrane Musculoskeletal]
• See Pathway 2005 – Rheumatology Guidance Begins Year 2005 [Cochrane Musculoskeletal Consumer Group (CMSG)]

Co-production of Stakeholder Groups – Joint working between people or groups who have traditionally been separated into categories of user and producer.

• See Pathway 2002 – Databanks And Registries Year 2002 [FORWARD: National Databank for Rheumatic Diseases]
• See Pathway 2010 – Focus On Expanding PCOR Leads To The Established Of Collaborative Communities – United States Years 2013, 2015 [PCORI]
• See Pathway 2010 – Young People Help Shape Rheumatology Research Year 2014 [EULAR Young PARE]
• See Pathway 2015 – Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015 
• See Pathway 2015 – The ACTion Council Is Established Year 2015
• See Pathway 2020 – Rheumatology Registries And Research Front And Center Year 2020 [Global Healthy Living Foundation/CreakyJoints, FORWARD: National Databank for Rheumatic Diseases, COVID-19 Global Rheumatology Alliance]

Health consumer In the Cochrane Collaboration, the term ‘health consumer’ applies to anyone who uses, is affected by or is entitled or compelled to use a health‐related service. A health consumer is anyone who is concerned with making wise health‐care decisions, whether he or she is a patient, family member or caregiver.

• See Pathway 1993 – Patient Engagement In Rheumatology Begins Year 1993 [Cochrane Musculoskeletal]

Patient-Powered Networks are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes.

• See Pathway Stop 2010 – Focus On Expanding PCOR Leads To The Established Of Collaborative Communities – United States Year 2013 [PCORI/PPRNs/PR–COIN], Year 2015 [CreakyJoints/ArthritisPower], Year 2015 [Arthritis Foundation, PR-COIN, Lupus Foundation of America/PARTNERS

Peer Reviewer (may also be called a Consumer Reviewer) is a person that has experience of the disease or intervention.

• See Pathway 1993 –Patient Engagement – And We’re Off! Year 1993 [Cochrane Musculoskeletal]
• See Pathway 2000 – Patients Included In The Regulatory Process [EMA]
• See Pathway 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative [FDA]
• See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe [EMA/FDA]

Regulatory Reviewer Persons affected by specific diseases who consult for regulatory reviews. See also Consumer Reviewer. Research Committee An advisory body of individuals from various stakeholder groups.

• Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2017 [FDA/CTTI]

Working Groups

• See Pathway 2000 – Patients Included In The Regulatory Process Year 2003 [EMA]
• See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Years 2015-2017 [EMA, FDA]
• See Pathway 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018 
• See Pathway 2015 – Value-Based Health Care Year 2019
• See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2017
• See Pathway 2020 – Rheumatology Registries And Research Front And Center Year 2020

Established Concepts

Developed concepts that include defined involvement activities and which may or may not include associated guidance.  These are important to note for measuring value if the same term – but different meaning – is used by other groups.  Mentor Assisted Research (MAR) Mentor Assisted Research rely on patients leading various phases of research with professionals assisting as advisors. Put into practice by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) in 2015 by training patients to lead focus groups (qualitative research), with professionals as advisors.

• See Pathway 2015 – Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015 [International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), FORWARD: National Databank for Rheumatic Diseases]
• See Pathway 2015 –Precision Medicine In Rheumatology Is On The Horizon Year 2019 [International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), OMERACT]

Patient Centered Outcomes Research (PCOR) – the Patient Centered Outcomes Research Institute (PCORI) established the research approach called patient-centered outcomes research, or PCOR, which 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.

• See Pathway 2010 – Experience Working With Patients In Research Leads To Guidance For Best Practices Year 2013
• See Pathway 2010 – Opportunities For Patient Involvement In Advisory Panels Expands Years 2011, 2013
• See Pathway 2010 – Focus On Expanding PCOR Leads To The Established Of Collaborative Communities – United States Years 2013, 2015
• See Pathway 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Year 2013
• See Pathway 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients Years 2016, 2017
• See Pathway 2015 – Patient Engagement In Research Is Here To Stay – The Growth Of Patient-Centered Research Conferences Year 2015 

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. Developed by the Food and Drug Administration (FDA).

• See Pathway 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative Years 2012, 2016, 2017, 2018, 2019 [National Psoriasis Foundation, Arthritis Foundation, Lupus and Allied Diseases Association, Lupus Research Alliance, Lupus Foundation, FasterCures]

Patient Involvement in Research (PIR) the term developed in the 1990’s by INVOLVE/National Institute for Health Research to mean being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.  “PIR” is now also referred to as Patient and Public Involvement (PPI) or Consumer Involvement.

• See Pathway 1996 – INVOLVE Is Established To Support Public Involvement In Research (PIR) Year 1996
• See Pathway 2010 – Experience Working With Patients In Research Leads To Guidance For Best Practices Years 2011 [EULAR], 2012 [INVOLVE]
• See Pathway 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018 [CIHR]

Patient-Oriented Research (POR) –as defined by the Canadian Institutes of Health Research. Endorses the active partnership of patients, researchers, health professionals and decision-makers in research so as to build a sustainable and accessible health care system that optimizes the health of Canadian citizens. See Strategy for Patient-Oriented Research 2011, 2014, 2018 (SPOR). 

• See Pathway 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Year 2011 [CIHR]
• See Pathway 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018 [CIHR]

Patient and Public Involvement in Research (PPI) See Patient Involvement in Research (PIR) Patient Preference Information (PPI) is one approach that incorporates the patient perspective in The Center for Devices and Radiological Health (CDRH) regulatory decision-making (through the Food and Drug Administration/FDA). CDRH defines patient preference information as qualitative or quantitative assessments of the relative desirability or acceptability to patients of specified alternatives or choices among outcomes or other attributes that differ among alternative health interventions.

• See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015

Patient Research Partner (PRP) EULAR defines a Patient Research Partner (PRP) as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project.

• See Pathway 2002 – Patients Are Invited To Join The Rheumatology Research Team Year 2002 [OMERACT]
• See Pathway 2010 – Experience Working With Patients In Research Leads To Guidance For Best Practices Years 2010 {OMERACT, EULAR], 2011 [EULAR]
• See Pathway 2010 – Formal Training Of Patients To Be More Active In Research Begins With EUPATI Years 2012 – 2014 [EUPATI]
• See Pathway 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Years 2012 [GRAPPA], 2013 [COMET, IDEOM, OMERACT]
• See Pathway 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients Year 2017 [American College of Rheumatology]
• See Pathway 2015 – Patient Engagement In Research Is Here To Stay – The Growth Of Patient-Centered Research Conferences Year 2014
• See Pathway 2015 – Additional Frameworks, Recommendations, And Reviews Years 2015 [EULAR], 2016 [EUPATI]
• See Pathway 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients Years 2016 [American College of Rheumatology], 2017 [EULAR]
• See Pathway 2015 – Establishing Measurements Of Effective Patient Engagement Year 2018 [Arthritis Research Canada]

Research Advocacy Conducting research and collecting data that can be used to influence legislation or public policy.

• See Pathway 2015 – Precision Medicine In Rheumatology Is On The Horizon Year 2017

Strategy for Patient-Oriented Research (SPOR) SPOR is a collaboration of researchers, patients, provinces and territories, health care professionals, and others – all working in partnership to integrate research into patient care, ultimately improving the health of Canadians.

• See Pathway 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Year 2011
• See Pathway 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018

Proper Names – Specific Engagement Groups or Initiatives 

If a CoPI was turned into an official panel or team of collaborators, the proper names are referenced in the bottom portion of this Glossary (differentiating these initiatives from Organizations/Groups). Arthritis Patient Advisory Board (APAB) – Derived from the first self-governed Consumer Advisory Council (CAC), now refers to the patient board for Arthritis Research Canada (AC). Advisory Panel

• See Pathway Stop 1998 – Patient Research Collaboration In Rheumatology Begins In Canada Year 2000 

Cochrane Musculoskeletal Consumer Group (CMSG) –  formed in 1993, enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. “The feedback provides a layperson’s perspective to complement the feedback provided by our clinical experts.” Consumer Reviewers

• See Pathway Stop 1993 – Patient Engagement In Rheumatology Begins Year 1993
• See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2005

GenerationR is a National Network (GenerationR Alliance) of Young People’s Advisory Group’s (YPAGs) based across the United Kingdom to support the design and delivery of pediatric research. GenerationR Alliance YPAGs are a resource available to any health researcher (both academic and life science industries) who seek the input of children, young people and families in their research projects. Advisory Council

• See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2006

Patients’ and Consumers’ Working Party (PCWP) was established by the European Medicines Agency (EMA) to provide a platform for the exchange of information and discussion of issues of common interest between EMA and patients and consumers. Consumer Reviewers, Working Group

• See Pathway Stop 2000 – Patients Included in the Regulatory Process Year 2006

The Patient-Centered Outcomes Research Institute (PCORI)’s Advisory Panel for Patient Engagement is an advisory body established in 2013 that provides input and recommendations to PCORI. Advisory Panel

• See Pathway Stop 2010, Opportunities For Patient Involvement In Advisory Panels Expands Year 2013

Patient Engagement Advisory Committee (PEAC) – Food and Drug Administration (FDA) committee providing advice to the Commissioner or designee on complex issues relating to medical devices, the regulation of devices, and their use by patients. Advisory Panel, Regulatory Reviewer

• See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015

Patient Engagement Collaborative – Food and Drug Administration (FDA) and Clinical Trials Transformation Initiative (CTTI) committee to develop guidance materials for R & D projects inclusive of patients. Research Committee

• Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2017

Patient Engagement Cluster (PEC) – Allows Food and Drug Administration (FDA) and European Medicines Agency (EMA) to share best practices involving patients along drug and biologic regulatory lifecycles. Information that is discussed is covered by confidentiality agreements signed by the FDA and EMA. Working Group

• Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015

Patient Research Ambassadors (through GenerationR program) is a network of young people’s advisory groups within the National Institute for Health Research (NIHR) that enables children and young people under 25 to be involved in research. Advisory Panels

• See Pathway 2002 – Young People And Families Are Included In Research Year 2006