Patient and Public Involvement Resources

EUPATI Individual Patient Training; The European Patients’ Academy (EUPATI) is a pan-European Innovative Medicines Initiative project of 33 organizations, led by the European Patients’ Forum, with partners from patient organisations, universities and not-for-profit organizations, along with a number of European pharmaceutical companies. It provides scientifically reliable, objective and comprehensive information to patients on medicines research and development.

The Open Academy School on Medicines Research & Development helps prepare patients for advocating for medicines development, equal access to treatments across Europe and ensuring that medical information is clear, accurate and comprehensible. The European Organisation for Rare Diseases (EURORDIS) launched this training program for patient experts in 2008.

The European Research Infrastructure for Translational Medicine (EATRIS) offers self-paced online courses and resources to enhance understanding of translational medicine.

The European Medicines Agency (EMA) provides training resources for patients and consumers, including videos, documents, workshops, and webinars, to enhance understanding of EMA’s activities and the involvement of patients and consumers in medicines evaluation and regulation.

The PFMD E-Learning Platform offers accredited training programs to enhance patient engagement in pharmaceutical and medical technology sectors, featuring interactive modules and practical exercises.

The PCORI Research Fundamentals resource provides accessible, beginner-friendly training to help patients and the public understand and contribute effectively to health research. It includes modules, glossaries, and tools designed to build confidence and knowledge for meaningful research involvement.

The Australian Clinical Trials Alliance Consumer Involvement and Engagement Toolkit is a comprehensive guide that provides strategies and practical tools to support meaningful consumer involvement in clinical trials, enhancing collaboration between researchers and the public throughout the research process.

The Patients in Publications course by WECAN is an open-access online training designed to equip patient advocates with the skills to publish their own research and survey data, and to serve as co-authors or peer-reviewers in academic journals.

The Drug Information Association (DIA) offers a range of resources to support patient engagement, including:

• Patient Initiatives
• Patient Engagement Certificate Program
• Patient Engagement eLearning Program
• European Patients’ Academy

The Patients’ Academy for Research Advocacy develops educational programs that prepare patients and care partners to apply their lived experiences to inform the development of new and better medicines.

The Patient-Focused Medical Product Development (PFMPD) Webinar Series by the National Health Council offers educational sessions on integrating patient perspectives into medical product development. Topics include clinical outcome assessments, patient preference research, and patient engagement in clinical trials. These webinars aim to equip stakeholders with the knowledge to enhance patient-centeredness in healthcare research and development.

The Patient Centred Outcomes Research Institute (PCORI) Compensation Framework provides guidance on fair compensation for patients, caregivers, and patient/caregiver organizations engaged as research partners.

This resource outlines the The European Federation of Pharmaceutical Industries and Associations (EFPIA) Patient Remuneration Principles, providing guidance on fair and transparent compensation practices for patient involvement in pharmaceutical industry activities.

This resource from the National Health Council (NHC) outlines fair-market-value principles for compensating patients involved in engagement activities, promoting equitable and transparent collaboration.

The National Health Council’s (NHC) Fair Market Value Calculator is a tool designed to help organizations determine appropriate compensation for patient and public engagement in health care and research activities.

The Fair Market Value Calculator from the Patient Focused Medicines Development (PFMD)’s Patient Engagement Management Suite is a user-friendly tool designed to help organizations determine fair market value compensation for patient and public engagement activities, ensuring transparency and equity.

This resource outlines the European Federation of Pharmaceutical Industries and Associations (EFPIA) Patient Remuneration Principles, providing guidance on fair and transparent compensation practices for patient involvement in pharmaceutical industry activities.

Guidance from the National Institute for Health Research (NIHR) Centre for Engagement and Dissemination on recognizing and compensating public contributors for their involvement in research activities

Comprehensive financial guidance from the National Institute for Health Research (NIHR) to support applicants and award holders in managing budgets for patient-focused research projects.

This Canadian Institutes of Health Research (CIHR) resource provides comprehensive guidance on patient and public engagement in health research, offering practical tools, strategies, and principles to foster meaningful collaboration and improve research outcomes.

This resource provides comprehensive guidelines for compensating patients and public members involved in research and engagement activities, ensuring fair and consistent practices in alignment with Canadian Institutes of Health Research (CIHR)’s standards.

The Association of the British Pharmaceutical Industry (ABPI) Code of Practice for the Pharmaceutical Industry 2024 outlines ethical standards for promoting prescription medicines and engaging with healthcare professionals, patients, and the public.

The Association of the British Pharmaceutical Industry (ABPI)’s “Sourcebook for Industry” provides guidance on working with patients and patient organizations, emphasizing fair and transparent remuneration practices in compliance with competition law.

The Patient Partner Recognition Guide outlines Healthcare Excellence Canada’s approach to valuing patient partners, detailing compensation rates and engagement levels to ensure meaningful collaboration in healthcare improvement.

This Patient Focused Medicines Development survey provides practical questions to help researchers and healthcare professionals gain a deeper understanding of a condition and its therapy area, supporting meaningful patient and public engagement in research and decision-making.

The European Patients’ Academy on Therapeutic Innovation (EUPATI)’s EUPATIConnect is a platform that fosters collaboration between patient experts and researchers, enhancing patient involvement in medical research and development.

PatientsLikeMe is an online platform that connects patients with others who have similar health conditions, empowering them to share experiences, track outcomes, and contribute data to advance medical research and patient-centred healthcare solutions.

Savvy Cooperative is a patient-owned co-op that connects healthcare innovators with diverse patient perspectives to improve products, services, and research through meaningful collaboration.

This resource from the Reproductive Health National Training Centre (RHNTC) provides a comprehensive guide to understanding and improving patient experiences through effective communication, engagement strategies, and practical tools for healthcare providers.

International Children’s Advisory Network  (iCAN) is a global network empowering children, adolescents, and their families to actively participate in shaping paediatric health research and innovation.

The Patient Experience Data page from Patient Focused Medicines Development offers insights into integrating patient experiences into healthcare research to enhance care strategies and outcomes.

This article discusses the integration of patient experience data into the development, regulation, and clinical application of medicines within the European Union.

The Patient Experience Mapping Toolbox by the National Health Council is a resource designed to help organizations better understand and incorporate the patient journey into healthcare decision-making and improvement efforts.

This page on the Healthcare Excellence Canada website highlights the invaluable insights and perspectives gained from personal healthcare journeys, fostering inclusive and meaningful patient and public engagement.

Recommendations developed be the Innovative Medicines Initiative (IMI) PREFER (Patient Preferences in Benefit–Risk Assessments during the Medical Product Lifecycle).

This FDA guidance outlines methods for collecting comprehensive and representative patient and public input to inform patient-focused drug development and enhance regulatory decision-making.

This DIA Global Forum article highlights methods for assessing and integrating patient preferences to enhance patient-centric healthcare decision-making and engagement strategies.

Orphanet is a comprehensive resource dedicated to improving knowledge and care for rare diseases, providing detailed information on conditions, expert centers, research projects, and patient organizations worldwide.

The National Institute for Health Research (NIHR) website provides comprehensive resources and opportunities for patients and the public to engage in health and care research, including guidance, funding opportunities, and involvement initiatives.

This resource provides an overview of the CIOMS report, which highlights the importance of incorporating patient preferences into medical research, regulatory decision-making, and the safe use of treatments in everyday healthcare.

This Patient Focused Medicines Development (PFMD) document provides the Patient Engagement Quality Guidance (PEQG), offering a framework to ensure high-quality patient engagement in developing medicines and healthcare policies.

This European Federation of Pharmaceutical Industries and Associations (EFPIA) statement emphasises the importance of clear, accessible patient information leaflets, advocating prioritising patient needs in delivering essential healthcare information.

The Global Patient Experience Data (PED) Navigator, developed by the Patient Engagement Management Suite (PEM Suite), is a comprehensive tool designed to guide the collection and understanding of patient experience data.

This resource from the UK Home Office provides a set of accessible posters designed to raise awareness about accessibility issues, promoting inclusive practices and supporting the needs of individuals with disabilities in various environments.

The Patient Technology Implementation Framework by TransCelerate offers a comprehensive approach for organizations to integrate patient-facing technologies into clinical trials. It emphasizes strategic planning, rapid learning, and patient-centric design to enhance the adoption and effectiveness of these technologies

This Patient-Centred Outcomes Research Institute (PCORI) resource highlights the importance of putting research evidence into practice by fostering collaborations between researchers, healthcare providers, and patients to improve health outcomes and healthcare delivery.

This National Institute for Health and Care Research (NIHR) webpage outlines the role of Public and Patient Involvement (PPI) leads in healthcare research, emphasizing their responsibility in ensuring meaningful patient engagement throughout the research process to improve outcomes and relevance.

This Canadian Institutes of Health Research (CIHR) webpage outlines their strategic approach to patient engagement in health research, emphasizing the importance of involving patients in decision-making to improve research outcomes and ensure relevance to those directly affected by health conditions.

The International Patient and Public Involvement (PPI) Network connects global organisations and individuals to enhance the impact of patient and public engagement in health and social care research.

This CIOMS (Council for International Organizations of Medical Sciences) publication outlines best practices and guidelines for incorporating patient involvement in the development of medical products, emphasising the importance of patient perspectives in ensuring effective healthcare solutions.