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.
General Terminology
Advisory Panels (also called Advisory Councils) Conference Participant  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. Co-production of Stakeholder Groups – Joint working between people or groups who have traditionally been separated into categories of user and producer. 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. 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. Peer Reviewer (may also be called a Consumer Reviewer) is a person that has experience of the disease or intervention. 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. Working Groups
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. 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. 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). 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. 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).  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. 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. Research Advocacy Conducting research and collecting data that can be used to influence legislation or public policy. 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.
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 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 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 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 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 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 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 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 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