Are you planning a patient engagement activity in the early discovery and preclinical phases of medicines development?
A specialised How-to Guide, co-created with experts, is here to support you.
Are you an expert in the development of a clinical outcome assessments (COA) strategy?
The first co-created and comprehensive How-To Guide on Patient
Engagement in the development of a Clinical Outcome Assessment (COA) is now ready-to-use.
Are you planning to engage patients in clinical trial protocol design?
A specialised How-to Guide, developed through a systematic co-creation methodology with experts, is here to support you in specific patient engagement activities.
Are you planning a peer-reviewed publication? Would you like patients to be able to access it and understand it?
Download now the first experts co-created How-To Guide for the development and dissemination of plain language summaries of peer-reviewed publications and conference presentations.
Are you planning a patient engagement activity in the early discovery and preclinical phases of medicines development?
A specialised How-to Guide, co-created with experts, is here to support you.
Are you an expert in the development of a clinical outcome assessments (COA) strategy?
We need your help in finalising the first co-created, comprehensive Patient Engagement How-to Guide For COA Strategy Development
Public consultation open until July 2nd, 2021
Are you an expert in clinical trial protocol design?
We need your help in finalising the first co-created, comprehensive Patient Engagement How-to Guide For Clinical Trials Protocol Design
Public consultation open until July 2nd, 2021
Are you planning a peer-reviewed publication? Would you like patients to be able to access it and understand it?
Download now the first experts co-created How-To Guide for the development and dissemination of plain language summaries of peer-reviewed publications and conference presentations.
Guidance for Community Advisory Boards
Are you planning to set up, run, or engage in a community advisory board? Then this guidance and related tools are for you. This guidance has been developed by the PARADIGM public-private partnership. PFMD is committed to its adoption, maintenance and sustainability.
Patient Engagement in Early Dialogues (HTA)
Are you working in an HTA body? Are you interested in patient engagement? Then access this highly adaptable set of tools to guide you through your patient engagement journey. This resource has been developed by the PARADIGM public-private partnership. PFMD is committed to its adoption, maintenance and sustainability.
An easy-to-navigate platform to help you get started with patient engagement in research. The selected relevant public resources will help you understand the basics of patient engagement, and guide you through the different phases of patient engagement: from planning to conducting and evaluating.
The resource centre is developed by Eatris, the European Patient’s Forum (EPF), and the European Aids Treatment Group (EATG).
Background
Click here to expand
2017
As part of PFMD’s co-creation mission to deliver tools and guidances for enhanced patient engagement, a list of most common 150+ patient engagement activities was identified
2018
More than 100 people from over 50 organisations worked on delivering a co-created guidance with criteria for good patient engagement (PEQG)
As part of the effort for creating a comprehensive guide for systematic patient engagement,the first edition of Book of Good Practices was released, following the PEQG criteria
But we couldn’t stop here. The patient engagement community was in need for more detailed How-To Guides for at least some of the identified activities (from the 150+ list)
A public consultation was organised to help narrow down the list and prioritise the most needed topics.
2019
Piloting of the generic guidance (PEQG) started and more and more organizations started to use it as the go-to initiation or evaluation tool for patient engagement.
Multi-stakeholder working groups started to take shape, aiming to develop co-created How-To Guides covering the previously prioritised activities. These would be specific activities from the medicines development phases, but also covering overarching topics (i.e. plain language summaries)
2020
The groups continued to grow (54%, from 67 to 103 by June 2020), benefitting from the enthusiastic involvement from experts and representatives from over 50 organisations.
Currently there are 4 How-To Guides at different stages of completion
Public consultation for some of the How-to Guides
2021
Public consultations
Launch of the How-to-Guides
These groups laid the foundation for effective patient engagement with the co-creation of the Patient Engagement Quality Guidance (known also as PEQG for short) and the Book for Good Practices (or BoGP) – both released in May 2018. These tools were devised from the contributors’ aggregated experience, reviewed and validated through public consultation, as well as expert reviews in specific focus groups. They offer a framework for engaging patients and provide concrete and real-life examples of patient engagement in action, and are an integral part of the Patient Engagement Management Suite.
The Patient Engagement Quality Guidance serves as a core building block for the Patient Engagement How-To Modules – step-by-step, in-depth guides on making patient engagement happen, developed through co-creation Working Groups active in 2019 and 2020. These How-to Guides are built following a 4-phase methodology already proven effective when developing the Patient Engagement Quality Guidance.
People and organisations that are actively working on developing these guides
You can see below a quick glimpse of the network behind these materials. Access Synapse to view more, as well as other associated resources
Perspectives from contributors
Training can help to build capacity for patient engagement
May 5th 2020 by Gary Finnegan
Training, including online education, can play a key role in developing mutual understanding between clinical researchers and the patients whose needs they aim to meet.
Involving patients in drug development – from the start
May 12th 2020 by Gary Finnegan
Meaningful patient input in drug development is still in its infancy. Medicines regulators, including the FDA and EMA, began systematically engaging patients less than a decade ago.
Implementing patient engagement in clinical trial design
May 19th 2020 by Danielle Barron
Even in the best of circumstances, clinical research is a complex and challenging endeavour. In recent years, however, the pharmaceutical industry has realised that the unique insight only a patient can provide is crucial to successful trial design.
Researchers and patients benefit from co-designing clinical trials
May 27th 2020 by Gary Finnegan
Clinical research can be time-consuming and costly for scientists and sponsors, and maybe a burden on those participating. One way to make patient recruitment easier, and to reduce the number of people who drop out of trials before their conclusion, is to involve patients in designing studies.
Patient information leaflets: “Putting patients’ needs first is vitally important”
June 9th 2020 by Danielle Barron
Patient engagement in the drug development process does not come to a screeching halt when the medicine eventually reaches the market.
The final piece of the puzzle: capacity building in patient engagement
June 24th 2020 by Danielle Barron
The PFMD How-To Module for Capacity Building is a repository of training, education and capacity-building materials on patient engagement and pharmaceutical product development.
All the PEM Suite tools are designed to work together.
Interested to learn more about patient engagement?
Starting a patient engagement initiative and need support with legal and contractual work?
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The “Patient Engagement Management Suite” is brought to you by the PFMD partnership.