Patient Partners in Research
Patient and public involvement (PPI) refers to research carried out "with" or "by" members of the public, rather than "to", "about" or "for" them. PPI can be achieved in different ways. A research team can collaborate with patient partners across some or all stages of a study, from problem identification to research dissemination. PPI can also be part of the structures and institutions of research, e.g. setting research priorities.
ResCenPI focuses on one area of PPI, namely "patients as partners in research".
The Research Centre for Patient Involvement (ResCenPI) and its affiliates focus on research involving patients that will aid in the design, evaluation and implementation of complex interventions that support further patient involvement in healthcare. The aim is to innovate experiences and delivery of healthcare and improve health outcomes.
ResCenPI wants patients, families and professionals to be involved as partners in research, participants in studies and contributors to the design, development and evaluation of healthcare interventions.
Professional Organisations & Conferences
ISOQOL
International Society for Quality of Life Research (ISOQOL): https://www.isoqol.org/
Mission
ISOQOL's mission is to advance the science of quality of life (QOL) and related patient-centred outcomes (PCOs) in health research, care and policy.
Vision
ISOQOL will improve QOL for people everywhere by creating a future in which their perspective is integral to health research, care and policy.
Patient Engagement
ISOQOL supports the patient voice in QOL and PRO research. Patient engagement initiatives are intended to align ISOQOL’s priorities and infrastructure with efforts to establish best practice in patient engaged QOL research and create educational efforts and model programmes that promote best practice and fulfil ISOQOL’s mission.
ePROVIDE
The ePROVIDE platform centralises all Mapi Research Trust resources and services, which help develop the endpoint strategy or identify the right outcomes for a study.
Subscriptions - ePROVIDE™ (mapi-trust.org)
HealthyQOL.com
HealthyQOL's Quality of life (QOL) assessments include questions that help to measure what matters to individuals about their quality of life, healthcare experiences, physical, mental and social health:
healthyqol.com
PROMIS
PROMIS is a rigorously tested patient reported outcome (PRO) measurement tool that uses recent advances in information technology, psychometrics, and qualitative, cognitive, and health survey research to measure PROs such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases:
PROMIS: Clinical Outcomes Assessment (nih.gov)
PROTEUS
The PROTEUS Consortium promotes tools and resources to optimise the use of patient-reported outcomes (PROs) in clinical trials to ensure that patients, clinicians, and other decision-makers can make the best decisions about treatment options:
PROTEUS (bham.ac.uk)
COSMIN
COSMIN helps select the most suitable outcome measurement instruments. COSMIN aims to improve the selection of outcome measurement instruments both in research and in clinical practice by developing methodology and practical tools for selecting the most suitable outcome measurement instrument:
COSMIN - Improving the selection of outcome measurement instruments
The Researchers on ResCenPI
Now I plan the engagement of the patient partners much earlier than before and I am more critical about how and when to engage patient partners.
If I were not affiliated with ResCenPI, I would have just designed and tested my intervention by myself. It is a great help to be a part of something bigger and cooperate with more experienced researchers.