Improving the multi-stakeholder framework for patient engagement (PE) was the goal of the final session of the PE Open Forum 2019
Hosted by Ingrid Klingmann of EFGCP, Karina Huberman and Giorgio Barbareschi of EATG, the final break-out session of the Open Forum aimed to raise awareness regarding relevant materials already under development and to foster collaboration for future co-creation of the next generation of patient engagement tools. Read More
The importance of collaboration and alignment and why it takes a village to achieve meaningful patient engagement (PE) was the opening call to action at the recent Patient Engagement Open Forum – Delivering patient engagement beyond aspirations. Over 250 delegates participated in the two-day immersive event which took place in Brussels, Belgium on 18–19 September 2019. Read More
Workshop highlights the challenge of drafting contracts for patient-pharma collaboration but aims to make co-created legal agreements the norm.Read More
The lack of a transparent and consistent system in place for financial compensation that reflects the level of individual contribution and expertise of patient partners is finally being addressed, heard the Patient Engagement (PE) Open ForumRead More
An interactive workshop at the Patient Engagement (PE) Open Forum offered a chance to hear how patient engagement works in practice. Read More
By Dr Stuart Faulkner, Programme and Operations manager, Nuffield Department of Primary Health Sciences, Oxford University, UK
Patient engagement (PE) and patient and public involvement (PPI) before, during and after the research process can help develop research questions, methods and outcomes that respond better to the needs and interests of patients, carers compared to when researchers alone in isolation. Furthermore, researchers can benefit by producing research that is more relevant and impactful.
English language survey results
Chi Pakarinen, Daphnee Pushparajah, Paula Decola, Magda Chlebus, and Suzanne Ii Read More
An editorial written by Mathieu Boudes, EPF, coordinator PARADIGM and Alexandra Moutet, UCB, member of the PARADIGM Steering CommitteeRead More
PARADIGM understood from the start that the success of the initiative is dependent on a number of factors, none more important than understanding the perspectives and needs of the diverse set of stakeholders associated with the patient engagement ecosystem. These perspectives are important in the design, development, dissemination and implementation of PARADIGM; essentially these underpin the entire initiative. Read More
Not unlike the Shakespearean play, Measure for Measure, justice is critically important to PARADIGM. Both the play and the initiative are focused on the sensibilities around the concept of justice. If PARADIGM is to fulfil its promise, the overall patient engagement outputs must be justified, in other words, be found to be legitimate or valid and to have value. One important output for PARADIGM is the design of a monitoring and evaluation framework for patient engagement. Read More
One of the essential outputs from PARADIGM will be a set of recommended core capabilities that should underpin patient engagement in the defined priority areas within the medicines lifecycle. These capabilities are composites of individual attributes; this includes knowledge, skills and attitudinal aspects of patient engagement that are context-bound. Additionally, organisational capabilities need to be considered such as processes, tools and systems. Read More
A gap is defined by what is around it, a bit like a donut hole. A gap analysis is somewhat straightforward, albeit complex process that helps to identify the current holes in existing frameworks, processes and practices. A core aspect of PARADIGM’s strategic plan is to build upon the existing patient engagement activities and to bridge existing gaps. Read More
If a tree falls in the forest and no one hears it, does it make a sound? This philosophical question provides an important cautionary tale for the PARADIGM project. If PARADIGM delivers on the promised outputs, but no one knows about it, in essence, it fails. A critical part of success is awareness and transparency during the project, as well as uptake of the outputs upon its completion. Our remit involves not only the creation of content; it is about ensuring the target audience understands that content and its contextual underpinning.Read More
Sustainability is the new catchall phrase, yet when it comes to initiatives like PARADIGM, we cannot afford to offer empty promises. Sustainability is an essential element of success. If patient engagement is to truly deliver, it must become systematic, especially as the positive outcomes of patient engagement will be experienced over long periods of time, across a very broad scope of R&D programmes. Read More
An editorial by Nicola Bedlington, EPF Secretary-General and Magda Chlebus, EFPIA Executive Director, Science Policy and Regulatory Affairs
A report on the EURORDIS Round Table of Companies, Barcelona October 16, by Maarten Kraaijenhagen
Twice per year, EURORDIS organizes the European Round Table of Companies, bringing together industry, patient advocates, public officials and other experts to address patient needs.Read More
By Teresa Finlay and Lidewij Vat
On Nov 15 and 16, we attended the conference ‘International Perspectives on Evaluation of Patient & Public Involvement in Research’ in Newcastle. The conference attracted researchers, professionals and patient contributors who together discussed whether and how the impact of patient and public involvement* should be evaluated. Four themes struck us from the debate on evaluation. Read More
Dr Stuart Faulkner, Oxford University, reports on the first joint workshop of PARADIGM Work Packages 1 & 2
On Oct 11th 2018, at UCB headquarters in Anderlecht, Brussels, PARADIGM WP1 and WP2 held their first joint workshop, ‘Translating Inputs into outputs’. This marked a pivotal point in the development timelines of both work packages that facilitated detailed sharing of progress, alignment of key joint timelines and process, and discussion of how we can continue to develop together, for the greater good of the consortium. Read More
For start-up biotech companies, the potential benefits of engaging patients early and often are clear: insights on unmet patient need, guidance on how to value clinical improvement and reduced side effects, and a new way to give investors confidence in the future market for potential medicines. But making PE happen is far from straightforward.Read More
PARADIGM is receiving funding from the Innovative Medicines Initiative Joint Undertaking 2. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.