RESEARCH CONTEXTS
Contexts are general categories or topics associated with the research. If you want to search for examples of collaborative projects (*in rheumatology) that involve children or lay summaries, for example, use the Context Glossary.
*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.
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 learn more about the Glossaries, watch video below:
Assessing grant applications
- See Pathway Stop 2010 – Opportunities For Patient Involvement In Advisory Panels Expands, Years 2011 [PCORI], 2012 [NIAMS], 2012 [Department of Defense (DoD)], 2013 [FOREUM]
Authorship
- See Pathway Stop 2020 Patients as Co-Authors Year 2020 [Chronic Pain Network], 2022 [Envision Pharma Group]
Basic Research
Scientific investigation that involves the generation of new knowledge or development of new theories; its results often cannot be applied directly to specific clinical situations.
- See Pathway Stop 2020 – Patient Involvement in Basic Rheumatology Research Year 2022 [Radboud University Medical Center]
Children
- See Pathway Stop 2002 – Young People And Families Are Included In Research Years 2002 [CARRA], 2006 [NIHR]
- See Pathway Stop 2010 – Young People Help Shape Rheumatology Research Year 2016 [Your Rheum]
- See Pathway Stop 2010 – Focus On Expanding PCOR Leads To The Established Of Collaborative Communities – United States Year 2015 [PARTNERS/PPRNs]
Clinical Effectiveness Research (CER)/Decision Science
CER compares the effectiveness of two or more interventions or approaches to health care, examining their risks and benefits. CER findings assist clinicians, patients, and other stakeholders in making informed decisions that improve health care. Comparing two or more interventions distinguishes CER from other types of clinical research. It can both validate a particular intervention and identify which treatments best meet a certain population’s needs.
- See Pathway Stop 2015 – As The Value Of Patient Engagement Evolves, So Does Guidance And Outcome Focus Year 2013 [PCORI]
Clinical Trials
- See Pathway Stop 2010 – Formal Training Of Patients To Be More Active In Research Begins With EUPATI Year 2014 [EUPATI]
- See Pathway Stop 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative Year 2012 [FDA/EMA]
- See Pathway stop 2015 –Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015 [CTTI]
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2017 [FDA/CTTI]
- See Pathway Stop 2020 – Precision Medicine In Rheumatology Is On The Horizon Year 2015 [AiArthritis, Preparing Patients for PM Trials project]
Compensation
- See Pathway Stop 2020 – Compensating Patient Partners – Guidance Emerges Year 2018, 2020 [Canadian Arthritis Patient Alliance (CAPA) and the Rare Disease Foundation]; Year 2019 [National Health Council]
Core Outcome Sets (COS)/Core Outcome Measures
A COS is an agreed standardized set of outcomes that should be measured and reported, as a minimum, in all clinical trials in specific areas of health or health care. This approach reduces heterogeneity between trials, and leads to research that is more likely to have measured relevant outcomes. Importantly, it enhances the value of evidence synthesis by reducing the risk of outcome reporting bias and ensuring that all trials contribute usable information.
- See Pathway Stop 2002 – Patients Are Invited To Join The Rheumatology Research Team Year 2002 [OMERACT]
- See Pathway Stop 2010 – Concepts Of Patient Involvement (CoPI) Change The Paradigm For Patient Engagement In Research Year 2013 [COMET/IDEOM/OMERACT]
- See Pathway Stop 2015 – Value-Based Health Care Year 2019 [ICHOM]
Decision Aids
Patient decision aids are tools that help people become involved in decision making by making explicit the decision that needs to be made, providing information about the options and outcomes, and by clarifying personal values. They are designed to complement, rather than replace, counseling from a health practitioner.
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2015 [FDA]
- See Pathway Stop 2015 – Precision Medicine In Rheumatology Is On The Horizon Year 2015 [AiArthritis, OMERACT – Preparing Patients for PM Trials project]
Dissemination (Knowledge Translation)
Process of translating information in an understandable and meaningful way. Knowledge translation (KT) is defined as activities involved in bringing research evidence to various audiences in a useful form so it can be used to support decision making and improve practices.
- See Pathway Stop 1993 – Patient Engagement In Rheumatology Begins Year 1993 [Cochrane Musculoskeletal]
- See Pathway Stop 1996 – INVOLVE Is Established To Support Public Involvement In Research Year 1996 [NIHR/INVOLVE]
- See Pathway Stop 2002 – Young People And Families Are Included In Research [NIHR/GenerationR]
- See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2006 [Cochrane Musculoskeletal Consumer Group (CMSG)], 2008 [ASAS/EULAR]
- See Pathway Stop 2010 – As The Value Of Patient Engagement Evolves, So Does Guidance And Outcome Focus Year 2013 [PCORI], Year 2014 [Cochrane Musculoskeletal Consumer Group (CMSG)]
- See Pathway Stop 2020 – Rheumatology Registries and Research Front and Center Year 2020 [COVID-19 Global Rheumatology Alliance]
Ethical Review
- See Pathway Stop 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018 [CIHR], Year 2019 [ESCEO/WHO]
Guideline Development
- See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2005 [Cochrane Musculoskeletal, systemic reviews]
- See Pathway Stop 2010 – Experience Working With Patients In Research Leads To Guidance For Best Practices Year 2010 [EULAR/OMERACT, PRP collaboration], Year 2011 [EULAR, patient engagement reference cards], Year 2012 [NIHR/INVOLVE, briefing notes]
- See Pathway Stop 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative Year 2019 [FasterCures, PFDD]
- See Pathway Stop 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2018 [CIHR, ethics PRP], Year 2018 [NIHR/INVOLVE, 6 standards for patient engagement], Year 2019 [ESCEO/WHO, best practices patient engagement]
Health Technology Assessment (HTA)
- See Pathway Stop 2010 – Formal Training Of Patients To Be More Active In Research Begins With EUPATI Year 2014 [EUPATI, patient expert training]
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2015 [FDA, Patient Engagement Advisory Committee (PEAC)]
Lay Summaries
A brief summary of a research initiative that has been written for members of the public, rather than researchers or professionals and that explains any technical terms that have to be included.
- See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2008 [ASAS/EULAR]
- See Pathway Stop 2020 – Pharmaceutical Companies Expand The Role Of The Patient Advisory Panel Year 2020 [BMS, PEERS program]
- See Pathway Stop 2020 – Rheumatology Registries and Research Front and Center Year 2020 [COVID-19 Global Rheumatology Alliance]
Measuring Impact
- See Pathway Stop 2015 – Establishing Measurements Of Effective Patient Engagement Year 2018 [Arthritis Research Canada/PEIRS tool]
Patient-Powered Registry
Patient registries are defined as an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s) (REFERENCE: Agency for Healthcare Research and Quality, 2010). In patient-powered patient registries, patients and family members “power” the registry by managing or controlling the collection of the data, the research agenda for the data, and/or the translation and dissemination of the research from the data.
- See Pathway Stop 2002 – Databanks And Registries Year 2002 [FORWARD: National Databank for Rheumatic Diseases]
- See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2002 [CARRA]
Patient-Reported Outcomes (PROs)
PROs are defined as any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.
- See Pathway Stop – 2010 Experience Working With Patients In Research Leads To Guidance For Best Practices Year 2010 [University of West England, BRAF]
- See Pathway Stop – 2010 Opportunities For Patient Involvement In Advisory Panels Expands Year 2011 [PCORI, project list]
- See Pathway Stop – As The Value Of Patient Engagement Evolves, So Does Guidance And Outcome Focus Year 2013 [PCORI/Arthritis Foundation, report patient needs], Year 2014 [GRAPPA, Ps/PsA outcomes report]
- See Pathway Stop – Additional Frameworks, Recommendations, And Reviews Year 2015 [EULAR, RAID/PsAID instrument]
- See Pathway Stop – Value-Based Health Care Year 2019 [ICHOM, framework inflammatory arthritis]
Poster Presentation
- See Pathway Stop 1994 – EULAR Congress Inclusion Of Patients, Engagement Pillar Year 1994 [EULAR PARE]
- See Pathway Stop 2008 – EULAR PARE Established Year 2008
- See Pathway Stop 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients [ACR]
Precision Medicine
- See Pathway Stop 2015 – Precision Medicine In Rheumatology Is On The Horizon Year 2018 [AiArthritis, Preparing Patients for PM project]
- See Pathway Stop 2020 – Patient Involvement in Basic Rheumatology Research
Qualitative Research
- See Pathway Stop 2015 – Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015 [ AiArthritis, patient-led focus groups]
Registries (also See Patient-Powered Registries)
- See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2006 [NIHR/GenerationR]
- See Pathway Stop 2020 – Rheumatology Registries and Research Front and Center Year 2020 [COVID-19 Global Rheumatology Alliance]
Regulatory Process
- See Pathway Stop 2000 – Patients Included In The Regulatory Process Years 2000-2006 [EMA]
- See Pathway Stop 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative Years 2012-2019 [FDA, PFDD]
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Years 2015-2017 [ FDA/EMA]
- See Pathway Stop 2015 – Additional Frameworks And Recommendations For Including Patients In Research Year 2019 [ESCEO/WHO, best practices]
- See Pathway Stop 2020 – Pharmaceutical Companies Expand The Role Of The Patient Advisory Panel Year 2020 [Bristol Myers Squibb (BMS), PEERS program]
Research & Development
- See Pathway Stop 1998 – Patient Research Collaboration In Rheumatology Begins In Canada Year 2000 [Arthritis Research Canada, patient board]
- See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2002 [CARRA, registry patient advisors], Year 2006 [NIHR, patient research ambassadors]
- See Pathway Stop 2009 – Pharmaceutical Companies Attempt To Engage With Rheumatology Patients Year 2009 [Pharma-patient engagement]
- See Pathway Stop 2010 Opportunities For Patient Involvement In Advisory Panels Expands Year 2013 [PCORI, patient board]
- See Pathway Stop 2010 – Formal Training Of Patients To Be More Active In Research Begins With EUPATI Year 2014 [EUPATI]
- See Pathway Stop 2010 – Young People Help Shape Rheumatology Research Year 2014 [EULAR Young PARE, collaborative research], Year 2016 [Your Rheum, young persons collaborative research]
- See Pathway Stop 2010 – Establishment And Evolution Of The Patient-Focused Drug Development Initiative Year 2012 FDA/PFDD
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2016 [FDA/EMA Patient Engagement Cluster (PEC)], Year 2017 [FDA/CTTI, patient R & D guidance], Year 2017 [EMA, patient/consumer review]
- See Pathway Stop 2015 – Pharmaceutical Companies Get More Involved In Patient Research Collaborations Year 2015 [AiArthritis, FORWARD: National Databank for Rheumatic Diseases, A Community Team project, CTTI]
- See Pathway Stop 2015 – Additional Frameworks, Recommendations, And Reviews Year 2016 [EUPATI, R & D Toolbox]
- See Pathway Stop 2020 – Pharmaceutical Companies Expand The Role Of The Patient Advisory Panel Year 2020 [Bristol Myers Squibb (BMS), PEERS Program]
- See Pathway Stop 2020 – Patient Led Guidance to Help Researchers Improve Collaboration Year 2022 [The Saskatchewan Center for Patient-Oriented Research (SCPOR)]
- See Pathway Stop 1st Scientific Session at ACR to Assist those Designing Patient-Included Rheumatology Research Projects Year 2022 [American College of Rheumatology]
Study Groups
- See Pathway Stop 2015 – Rheumatology Scientific Meetings Continue To Unite Researchers, Rheumatologists, And Patients Year 2016 [ACR, patient-centered study group ], Year 2017 [EULAR PARE, patient-centered study group]
Systemic Literature Review
Systematic reviews are like scientific investigations in themselves, using pre-planned methods and an assembly of original studies that meet their criteria as ‘subjects’. The systematic reviewers synthesize the results of an assembly of primary investigations using strategies that limit bias and random error.
- See Pathway Stop 1993 – Patient Engagement In Rheumatology Begins Year 1993 [Cochrane Musculoskeletal Consumer Group (CMCG)]
- See Pathway Stop 2005 – Rheumatology Guidance Begins Year 2005 [Cochrane Musculoskeletal Consumer Group (CMCG)]
Value Based Health Care
- See Pathway Stop 2015 – Value-Based Health Care Year 2019 [ICHOM, framework inflammatory arthritis]
Young Adults
- See Pathway Stop 2002 – Young People And Families Are Included In Research Year 2002 [CARRA, registry patient advisors], Year 2006 [NIHR/GenerationR, advisory group]
- See Pathway Stop 2010 – Young People Help Shape Rheumatology Research Year 2014 [EULAR Young PARE, collaborative research], Year 2016 [Your Rheum, young persons collaborative research]
- See Pathway Stop 2015 – Patient Engagement In The Regulatory Process – Tools Emerge Year 2017 [EMA, young patient involvement standards developed]
