Glossary: Concepts of Patient Involvement (CoPIs)
Concepts of Patient Involvement (CoPI) are generally overarching and established terminology associated with methods of engagement that involve patients in the research process. This Glossary is divided into three subgroups – General Terminology, Established Concepts, or Proper Names.
Search the CoPI Glossary to locate existing terminology in practice to replicate, reference, or build upon, so we can improve efforts to measure the value of patient engagement in *rheumatology research.
*Not all entries on the Pathway are rheumatology specific – like initiatives by the European Medicines Agency (EMA) or PCORI – but were necessary to include because collaborative projects in rheumatology evolved from this work. Some terms, like “Patient Research Partner/PRP” originated in our space, but may be used differently in other disease spaces.
PLEASE NOTE – The Pathway is a living tool and this initial framework is limited to submissions provided by our original ACTion Council team through December 2020. If you think you have projects, examples, or case studies to submit, please read our submissions guidelines before completing the application.
If you want to know more about the Glossaries, watch the video below:
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
- 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]
- 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)]
- 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]
- See Pathway 1993 – Patient Engagement In Rheumatology Begins Year 1993 [Cochrane Musculoskeletal]
- 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
- 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]
- Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2017 [FDA/CTTI]
- 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]
- 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
- 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]
- 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]
- 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]
- See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015
- 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]
- See Pathway 2015 – Precision Medicine In Rheumatology Is On The Horizon Year 2017
- 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
- See Pathway Stop 1993 – Patient Engagement In Rheumatology Begins Year 1993
- See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2005
- See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2006
- See Pathway Stop 2000 – Patients Included in the Regulatory Process Year 2006
- See Pathway Stop 2010, Opportunities For Patient Involvement In Advisory Panels Expands Year 2013
- See Pathway 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015
- Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2017
- Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge In The United States & Europe Year 2015
- See Pathway 2002 – Young People And Families Are Included In Research Year 2006
