Maarten Kraaijenhagen, Senior Medical Director Rare Disease with Pfizer and PARADIGM member interviews Marzena Nelken, board member of the EPF and Project Manager with the Federation of Polish PatientsRead More
Dr Stuart Faulkner and Laiba Hussain, Oxford University
On Feb 21st 2020, Work package 2 (WP2) held an interactive webinar to disseminate the final results of the identification and analyses of gaps in patient engagement (PE) practises and processes. It offered a unique chance to understand how identifying tangible gaps in PE can inform actionable outcomes in the development of tools, templates, and frameworks for improved patient engagement.Read More
Initial efforts to commence patient engagement initiatives across Novartis were greeted with both enthusiasm and scepticism, writes David Parrish, Patient Engagement Early Research and Dr Francesco Patalano, Head of Center of Excellence, Patient-Reported Outcomes at Novartis, and Laura McKeaveney, Global Head of Patient Advocacy with the Novartis Group.Read More
Patient and care-giver input into a Duchennes muscular dystrophy clinical trial had positive outcomes, explain Katherine Beaverson, Senior Director and Patient Advocacy Lead Rare Disease Research Unit, Pfizer and Maarten Kraaijenhagen, Senior Medical Director Rare Disease, Pfizer and PARADIGM memberRead More
Dr Rosamund Yu, Head of PPI and Research Communications at the NIHR biomedical research centre at University College London Hospital, outlines how cancer patients were instrumental in the successful development of a digital health toolkitRead More
The path to patient engagement does not always run smoothly. Michelle Mujoomdar, director of scientific affairs, Canadian Agency for Drugs and Technologies in Health (CADTH), outlines how the agency has learned from its endeavours in this areaRead More
Authors: Zsófia Bakonyi, Camilla Baouchi Habre and Chi Pakarinen (PARADIGM team)
As part of a new online series, PARADIGM sought to explore the many angles of patient engagement in real life, by looking at learnings from six different stakeholder organisations Read More
Authors: Dr Sheuli Porkess & Dr Jennifer Harris
Patient and public involvement must be embedded at a system-wide level throughout the health and research landscape – across government, industry, charity and academic sectors. Read More
Authors: Tjerk Jan Schuitmaker, Assistant Professor System Innovations in Health Care at Athena Institute (VU) and Paul Robinson, European Lead, Patient Innovation at MSD.
Metrics are good but what makes them both meaningful and feasible when it comes to Patient Engagement (PE)? A session at the PE Open Forum explored this questionRead More
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
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
The progress of the PREFER project will lead to broader use of patient preference studies in medicines R&D, write EPF’s Camilla Habre (Project Officer) and Mathieu Boudes (PARADIGM Coordinator) in a short report from the PREFER Annual Meeting 2019 Read More
Professor Faiez Zannad
Faiez Zannad is Professor of Therapeutics and Cardiology at the Centre d’Investigation Clinique Inserm and Université de Lorraine, CHU Nancy, France, and founder of the Global CardioVascular Clinical Trialists (CVCT)Read More
Developing appropriate policies for compensating patients, patient organizations, and family members for patient-engagement activities have been a hot topic for those involved in patient engagement in recent years.Read More
Author: Lisa Power, consultant EATG
Community Advisory Boards, both in-country and Europe-wide, are a feature of patient engagement (PE) in the R&D process for a growing number of health conditions. Patient advocates from across Europe meet with companies and researchers to inform the drug development pathway about real-life impacts and improve information flow to their communities. The European AIDS Treatment Group (EATG)’s European Community Advisory Board (ECAB) has been working for over two decades now on HIV and, more recently, drug development and access issues for viral hepatitis and tuberculosis. I spoke to members of the ECAB, as well as the Scientific Officer about their experiences from the early days when anyone could attend the ECAB to the current, more systematic and orderly structure.Read More
A two-part session taking place over both days of the Open Forum will endeavour to understand and prioritise gaps in patient engagement practices and processes, while also seeking to create future patient engagement tools.Read More
Dr Stuart Faulkner and Dr Teresa Finlay, University of Oxford
The aim of the PARADIGM project is to enable structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) that demonstrates the ‘return on the engagement’ for all stakeholders. PARADIGM’s partners are convinced of the importance of PE and are committed to working to improve its impact, value and sustainability across medicines research and development (R&D). At this midway point, it is worth reflecting on other views pertaining to PE in order to keep sight of why we are committed to this project and how we can maintain an inclusive approach as the tools we are developing begin to take shape.Read More
The Patient Engagement Open Forum is a unique event that aims to bring together a range of stakeholders interested in and committed to making meaningful patient engagement a reality.
In order to make this happen, stakeholders must have the right tools. The first session of the Open Forum is entitled “Learning from Good Patient Engagement Practices and Applying to your Everyday Work.”Read More
Is measuring the impact of patient engagement activities in medicines R&D, a way to sustain the cultural change for more systematic and meaningful patient engagement? We asked this question during a session at the DIA Global Annual Meeting 2019 in San Diego earlier this summer
Author: Mathieu Boudes, European Patients’ Forum and PARADIGM CoordinatorRead More
Ingrid Klingmann outlines the objectives and work of the PARADIGM Ethics Expert Panel
Patient engagement, by definition, is the meaningful and active collaboration of patients, patient advocates, patient representatives and/or carers in the decisions and judgements within the medicine lifecycle with all other relevant stakeholders involved. PARADIGM, an IMI project, aims at developing a framework of consensus-based recommendations on ethically-sound patient engagement practices, processes and tools, as well as on methods to measure and demonstrate the added value of innovative and effective approaches to patient engagement.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.
By Nathalie Moll, Director General, European Federation of Pharmaceutical Industries and Associations (EFPIA)
At EFPIA, we work across a wide spectrum of topics from prevention and awareness, through research and development (R&D), regulatory and Health Technology Assessment (HTA) processes, managing relationships, to developing healthcare service design and outcomes measurement. Each one has a direct impact on the lives of patients, their families and carers across Europe.
By Jean Georges, Executive Director, Alzheimer Europe
Dementia affects around nine million people in Europe. Despite many efforts, no treatment exists to date which could cure, prevent or slow down its progression. Globally, and at European level, a lot of research is being conducted which is helping to better understand what causes dementia, the risk factors, its progression, how to cope and live better with the condition and to develop more effective treatments and care options.
The term value-centred healthcare is increasingly replacing the concept of patient-centred healthcare. On the surface, this doesn’t seem to be problematic, given that patients intuitively seek value, but it is dependent on the inclusion of patient perspectives. However, the components of value have yet to be standardised. Aspects such as quality and cost are part of a number of value equations, although the prioritization or weighting of these elements can be a sticking point amongst stakeholders. Read More
The basic tenet to let go of things, and to declutter one’s surroundings, is fundamental to an organising method coined KonMari. Within healthcare systems, there is the opportunity to streamline the number of available interventions, to eliminate or let go of less effective ones.Read More
Author: Teresa Finlay, Postdoctoral Researcher, IRIHS Research Group
DIA Europe, a member of the PARADIGM International Liaison Group, held its annual conference in Vienna in early February. I quickly forgot the sun glinting on the Danube and biting cold when the impressive programme commenced. Structured around seven tracks concerning medicines research and development, the overarching theme that prevailed at conference sessions was change, its realities, its impact and management. I was fortunate to be able to attend the conference courtesy of one of PARADIGM’s industry partners, MSD, and with the IMI-PARADIGM project in mind, I focused on sessions related to patient engagement.
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