Table 1 Table of definitions
Term or concept | Definition |
|---|---|
Impact (from patient-centric projects) | Broader effect of outcomes, both positive and negative of patient engagement which could be either indirect or direct, intended or unintended [23] |
Life science industry | Standard Industry Classification (SIC) codes (specifically SIC 2007) define life science industry as an industry represented by companies whose primary activity is manufacturing (e.g. pharmaceuticals and medical devices) or those whose primary activity is research in biotechnology (which includes non-health biotechnology). The broader definition comprises companies operating in the research, development and manufacturing of pharmaceuticals, biotechnology-based food and medicines, medical devices, biomedical technologies, nutraceuticals, cosmeceuticals, food processing, and other products that improve the lives of organisms [50, 51] |
Medicine’s life cycle | The process of drug development from discovery, through early research into development and ultimate utilisation of the medicine in clinical practice [41] |
Patient | A person who lives with a health issue, risk and/or disease. In our paper, this definition includes the person who has the medical condition, as well as those who live with and/or care for this person (i.e. family and caregivers) |
Patient engagement project (PEP) | Subject matter collaboration between patients, patient advocates, patient representatives, caregivers and the industry in the processes and decisions within the medicines life cycle (see Patient Engagement). According to the Patient Engagement Value Model, PEP should include listening, insights generation and translation, co-creation and measuring impact |
Patient Engagement | The effective and active collaboration of patients, patient advocates, patient representatives and/or caregivers in the processes and decisions within the medicines life cycle, along with all other relevant stakeholders when appropriate [42] |
Patient Expert | A relatively new category of external non-HCP experts who meet the key criteria of appropriate capabilities (subject matter expertise) and representation, or ability to represent views and interests of many patients and/or patient organisations. Patient expertise may also manifest as the achievement and/or demonstration of academic/scientific influence, such as an EUPATI fellowship [43, 44] |
Patient Involvement | Used synonymously/interchangeably with ‘Patient Engagement’, though ‘involvement’ suggests a more active and collaborative engagement to understand the patient perspective [53] |
Patient Organisation (PO) | A collaborative group of individuals that provides patient support and/or lobbies on behalf of the collective views of patients, where patients and/or caregivers represent the majority of members in a governing body [43] |
Return on Patient Engagement | The impact derived as a result of a patient engagement activity [23] |
Value (from patient engagement projects) | The benefits of patient engagement for individuals or organisations involved [23] |