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2020 is coming to an end. It has impacted all of us at an individual level, in our families and friendships, and at work. Beyond our individual experiences, vulnerable communities have been hit the hardest, inequalities have grown, and patients have experienced all sorts of extra burden to various degrees.

The global pandemic revealed many gaps and inequities in our health systems but it also shone a light on science, the rigours of drug or vaccine development, clinical trials and health systems. COVID-19 is a demonstration that health is not just another commodity but the foundation on which all activities are built, from social bonding, travel and leisure to the economy. COVID-19 has also demonstrated that only science can help us to understand and face a pandemic.

The very same year, in this dramatic context, engaging patients has reached a new level. 2019 had seen a paradigm shift from focusing on the risk of involving patients to the risk of not engaging patients. As a result, the early majority began to roll-out best practices in patient engagement.

2020 turned individual organizations doing their part into one growing cohesive global movement sharing the same understanding, language, practices, tools and educational material to replicate, scale and sustain patient engagement. This global movement is developing its infrastructure with platforms like the Patient Engagement Open Forum, the patient engagement network Synapse and the CoRE and Milken Institute round tables with key stakeholders from across Asia, to name just a few. From Paradigm, the PEM Suite or elsewhere, practical tools continue to be developed and integrated to empower people in the field.

More than ever, the time has come to prioritize health; to do it together with patients in a key role to help shape better health systems and deliver better health outcomes. In PFMD, we believe patient engagement is faced with an opportunity to take a strategic turn, to scale in drug development, to broaden its geographic spread and to expand in other health systems, in digital health and data or in devices. We believe we have to invest in the patient community to ensure better outcomes for patients.

It has been the richest year ever in terms of patient engagement. Thousands of purpose-driven individuals and organizations have contributed to it and combined their brainpower and resources to make this happen at an unprecedented scale.

Whatever shape or form it has taken, we would like to acknowledge and thank all PE contributors and ambassadors, all connectors and champions of collaboration and collective action. We would particularly like to thank all those involved in the projects listed below. Thank you for all your work and efforts even in the face of adversity.

Let’s look together at 2021 and build on our growing movement to take PE to yet another level in yet other strategic areas for better health outcomes. Scaling patient engagement will happen through expanding our community and its collective action. After a challenging year, we can look to the future with optimism as we move forward together.

The PFMD Community and Members
 
New Patient Engagement outcomes
 
As difficult as it was, 2020 has been enriched with significant patient engagement advancements. We saw the wrap-up of PARADIGM and the delivery of its key outcomes – the Patient Engagement Toolbox, the Monitoring and Evaluation Framework with metrics, and the sustainability roadmap.

The Patient Engagement Open Forum maintained a high level of engagement in the patient engagement community, helping shape real solutions. The FMV Calculator launch put in place a system in the US for fair financial compensation reflecting the expertise and contribution of patient partners.

The second level of the Patient Engagement Training brought to the community concrete ways for everyone to understand and apply qualitative patient engagement tactics in their day-to-day work and the Reuters Awards nomination serves as a recognition of its importance in today’s ecosystem. New public-private partnerships are being developed in Asia, while the patient community continues to shape capacity and capability programs, and key stakeholders are starting to explore how to better work with patients.

Last but not least, PFMD saw the launch of its PEM Suite – an effective way of coherently integrating in a single hub co-created, systematic solutions for patient engagement.
 
 
As we are getting close to the end of 2020, yet another 3 launches this week to continue building the PEM Suite:
PE Training Repository

The patient engagement training program is an integral part of the PEM Suite – helping build capacity and capability across key stakeholders involved in patient engagement. After the success of the first level of training (the basics) in 2020, the second level has been launched focusing on the practical operationalization of key concepts. Today, in an effort to support stakeholders in their capacity building and beyond, we have published the Patient Engagement Training and Resources Repository, a collection of more than 140 training courses and educational materials.

Co-created by a wide array of experts working across the patient engagement landscape, including patient association representatives, pharmaceutical industry, and academia, this repository will serve as a critical piece of the puzzle when it comes to accessing worldwide educational material on these topics. All the database content has been identified and reviewed by the working group to ensure it is up-to-date and relevant.

 
 
The first How-to Guide public consultation launch

Involving patients in the preclinical phases of research is new – and largely uncharted – territory for academics, industry and patients, but it has been identified as a priority area by the co-creation work and consultations in PFMD. To support effective early patient engagement, a multi-stakeholder group was initiated to develop a How-To Guide on Patient Engagement in the Early Discovery and Preclinical Research. The goal – a practical guide, based on the early work done in the Patient Engagement Quality Guidance. It will be a guide that will provide the practical tools that academics, biotech and pharma researchers need to engage with patients from the beginning of the discovery process.

Now anyone can contribute in finalising this guide, by participating in the public consultation. We are looking forward to receiving your feedback by January 15th 2021.
 
 
Stay tuned for upcoming updates about the How-To Guides for patient engagement in 2021.
3rd edition of the Book of Good Practices

After a positive response of the last two editions, we are proud to announce the third edition of the PFMD Book of Good Practices. This edition contains a growing selection of concrete examples demonstrating the value and impact of patient engagement work and will hopefully become the go-to reference and a source of inspiration for those seeking to make patient engagement happen. A big thank you to all the participants and reviewers who made this possible.
You can now explore all cases of the third edition in Synapse or download the Book and read it offline.
New partners
We are proud to announce that three new partners joined the PFMD membership in 2020, with more following in 2021:
 
 
 
 
 
 
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