Articles Tagged with: Patient Involvement
Home / Blog Archives

CEE Patient Engagement Conference Part 1: Transferability workshops report

On May 12th, PARADIGM organised 3 parallel workshops online, aimed to provide the opportunity for participants from the CEE countries to give feedback and shape the thinking about the patient engagement tools that PARADIGM is currently developing to support sustainable patient engagement across the board. This resulted in the recognition from the PARADIGM consortium that for the tools to have a global impact, the insights coming from regions where the patient engagement ecosystem might be less mature are very much needed.Read More

From Gaps to Bridges: Tangible Gaps to Actionable Outcomes

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

Creating future patient engagement tools 

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

From Demonstrations to Dialogue

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

Don’t throw the patient engagement baby out with the bath water

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

12 months to make a difference, starting with the Open Forum on Patient Engagement

Mathieu Boudes – (EPF) PARADIGM Coordinator

One year. This is the time that remains for PARADIGM to have a tangible impact on the patient engagement in medicines R&D ecosystem. All the workstreams, as well as all our partners, are fully involved as we seek to deliver what will make a difference. The phase of aiming to understand and prioritize the gaps in patient engagement practices and the process will end soon, allowing the new phase to begin, that of developing the necessary tools to systematise patient engagement. Meanwhile, all the other elements of this significant project are converging to deliver the Monitoring and Evaluation Framework on time and by the end of the year.Read More

Learn the right tools for successful patient engagement at the Open Forum

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

Sustainability and measuring patient engagement

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

“Global CardioVascular Clinical Trialists”, as a new member in the PARADIGM in its International Liaison Group

PARADIGM is proud to announce a partnership with Global CardioVascular Clinical Trialists (CVCT), a community of cardiovascular clinical trialists. They will join the PARADIGM International Liaison Group (PILG),  an information hub acting as an operational platform to connect PARADIGM with key IMI and other international engagement initiatives in co-development and promote the implementation of patient engagement practices.Read More

Required capabilities and tools for patient engagement

In March 2019, a workshop was organised to validate the final draft of the “Recommendations on the required capabilities by all stakeholders to implement patient engagement” before launching the wider consultation and to perform a trial consultation. The group of 37 participants also sought to agree on concrete plans in the areas identified as gaps where the material for facilitating patients engagement is needed.Read More

Why IMI PARADIGM – The academic perspective

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.

Read More

Why IMI PARADIGM? – The industry perspective

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.

Read More

Why IMI PARADIGM? – The patient perspective

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.

Read More

The Price of Health Depends on Value

Editorial by Paula DeCola – Global Patient Affairs/Lead Healthy Ageing Center of Excellence at Pfizer

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

Value Creation: Making Room for Innovation

Editorial by Paula DeCola – Global Patient Affairs/Lead Healthy Ageing Center of Excellence at Pfizer

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

Stakeholder insights add value and are valued

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

Measure for measure: it isn’t trouble-free

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

Bridging gaps to generate new growth

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

4 lessons learned on evaluation of patient and public involvement

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

Translating Inputs into outputs

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

Determining the ‘value’ of patient engagement

Authors: Schuitmaker, T.J., Vat, L.E. & Robinson, P.

“What is in it for me?” A question often asked by people involved in patient engagement practices. Evaluating whether engagement adds value for different stakeholder groups can be an effective tool to further support patient engagement. The PARADIGM project is a European public-private partnership that is developing ways to ensure that patients are meaningfully involved in medicines development. One of the aims of the project is to develop metrics to measure the “return on engagement”.Read More

Webinar on patient engagement on medicines research and development

On September 6th 2018, four European patient organisations (European Patients’ Forum (EPF), European AIDS Treatment Group (EATG), EURORDIS-Rare Diseases Europe and Alzheimer Europe and a research foundation (Fondation Sant Joan de Déu) organised a webinar on patient engagement on medicines research and development. The webinar was attended by more than 100 interested people, many of them patient representatives.

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.

© Copyright 2020. All Rights Reserved. This communication reflects the author's view and that neither IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained therein.
X