News Archives - PARADIGM

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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

Looking further afield in Patient Engagement

Lisa Power, a consultant with the European Aids Treatment Group, explores how European organisations can support wider geographical diversity in patient engagementRead More

CEE Patient Engagement Conference Transferability Workshops

When? May 12th between 9am and noon

Where? Online

Registration here: https://cutt.ly/6tJ7g5B

“There is a lot of space to collaborate”

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

Implementing patient engagement across a global organisation

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 insight transforms study protocol

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

“Equal and valued members”

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

Building strong relationships with patients – challenges and opportunities for a regulator

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

Training patient advocates in PE – “a learning curve”

Training patients in PE has resulted in many successes, but there have also been missed opportunities, writes Traceann Rose, Program Director at the Children’s Tumor FoundationRead More

What does patient engagement look like in real life?

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

Engagement of people with dementia in Europe

Authors: Nicole Goedhart, Lidewij Vat, Léa Darvey (VU-Athena) and Ana Diaz (AE)

How to measure the shared value of patient engagement

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

Why patient engagement takes a village – highlights from the Patient Engagement Open Forum 2019

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

Co-creating legal agreements between patients & pharma

Workshop highlights the challenge of drafting contracts for patient-pharma collaboration but aims to make co-created legal agreements the norm.Read More

What does fair market value for patients look like?

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

Learning from good patient engagement practices

An interactive workshop at the Patient Engagement (PE) Open Forum offered a chance to hear how patient engagement works in practice. Read More

Understanding patient preferences – the next frontier in PE

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

A focus on evaluating patient engagement activities

Metrics to determine the shared value of patient engagement will be the focus of Session 6 on Day 2 of the Open Forum, which will be led by representatives from VU-Athena, MSD and EURORDIS.Read More

What’s a fair price for patient input?

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

What’s missing when it comes to patient engagement?

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

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

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

The Ethics of PARADIGM

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

The ultimate goal of patient engagement

The ultimate goal of patient engagement throughout the lifecycle of medicines is to develop safer, more effective therapeutic solutions for patients that closely match their specific needs, and to deliver them faster and more efficiently. The overarching mission of PARADIGM is to participate in the creation of a sustainable framework that allows structured, meaningful, and ethical patient engagement during three of the key decision-making points in the medicines development process; the research priority setting, the design of clinical trials, and early dialogues with regulators and HTA bodies.Read More

PARADIGM: Advancing meaningful patient engagement in the life cycle of medicines for better health outcomes.

English language survey results

Chi Pakarinen, Daphnee Pushparajah, Paula Decola, Magda Chlebus, and Suzanne Ii Read More

The PARADIGM International Liaison Group – a short-term support for our long-term goal

An editorial written by Mathieu Boudes, EPF, coordinator PARADIGM and Alexandra Moutet, UCB, member of the PARADIGM Steering CommitteeRead 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

Capitalising on core capabilities

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

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

Sustainability: fit for the future

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

PARADIGM featured in magazine series on patient engagement

A series of articles in EyeForPharma shows not only that patient engagement (PE) is gathering momentum but that PARADIGM is on the map.

The articles, published online and collected in a mini-magazine, address key issues in PE and include quotes from several leading PARADIGM participants. Read More

How community advisory boards can drive patient engagement in rare diseases

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

1st Open Forum on Patient Engagement

The 1st PARADIGM Patient Engagement Forum took place on the 10th of April in Brussels. It was co-organised by PARADIGM, PFMD and EUPATI. Below you can find a short report on the events of the day or click here for a downloadable version. Check out the forum’s video here.

PARADIGM, a unique collaboration for better patient engagement in medicines development kicks off with the first-ever open forum on patient engagement

Brussels, 10 April 2018 – A brand new collaboration between 34 public and private partners was launched today, with the aim to make meaningful patient engagement in the life cycle of medicines a reality. PARADIGM stands for Patients Active in Research and Dialogues for an Improved Generation of Medicines and is funded by the Innovative Medicines Initiative.

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.