Recent Stories

The impact of patient engagement

Patient health data: translating stories into science

by Gary Finnegan · April 25, 2022
How can real-world data be captured and shared in ways that marry the needs of patients and researchers?   Patients’ lived experience is increasingly viewed as a valuable datapoint in understanding and addressing unmet health needs....
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PFMD partners & projects

PARADIGM and PFMD – Kicking-off

by Roxana Radu · April 9, 2018
A European public-private partnership co-led by the European Patients’ Forum and EFPIA, PARADIGM’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient...
Tools for patient engagement

The co-created Patient Engagement quality guidance is arriving soon

by Roxana Radu · April 9, 2018
Our unique Patient Engagement Quality Guidance is finally coming to fruition and will be available very soon. A practical guide to designing, planning, developing and assessing the quality of patient engagement activities and projects...
PFMD partners & projects

5 minutes with… Kate Sonpal from INVOLVE

by Gary Finnegan · March 29, 2018
As part of a new series to help the patient engagement community get to know one another, we asked Kate Sonpal, Senior Public Involvement Manager at INVOLVE in the UK, to discuss how she is working to move patients centre-stage in...
The impact of patient engagement

“On the right track” in patient engagement

by Danielle Barron · March 27, 2018
Interview with Magda Chlebus, Executive Director of Science Policy & Regulatory Affairs at EFPIA.  The European Federation of Pharmaceutical Industries and Associations (EFPIA), MSD, UCB, and Bayer recently received major recognition...
Patient engagement in practice

Seeing the person behind the patient

by Danielle Barron · March 8, 2018
Interview with Dawn Richards, PhD, Director of Patient Engagement, Clinical Trials Ontario and Vice President of the Canadian Arthritis Patient Alliance. Dawn is also a member of the PFMD Patient Engagement Framework Building core team. ...
Patient engagement in practice

Sharing is caring: Rare diseases patients take centre stage

by Gary Finnegan · February 27, 2018
Rare diseases are finally in the spotlight. Share4Rare, a new awareness platform, moves patients centre-stage and opens new opportunities for patient engagement.   After decades of neglect, there is real momentum behind improving care for...
Patient engagement in practice

A dedicated team, one objective: better patient engagement

by Roxana Radu · February 12, 2018
Since the Framework building work stream started in 2016, we’ve held 7 workshops in Europe and the US in order to create the first version of a comprehensive and global framework for all stakeholders to do patient engagement (PE) in a...
The impact of patient engagement

Pledge when waiting for the kettle to boil, or when the train is late…

by Roxana Radu · February 8, 2018
Author: Kate Sonpal, Senior Public Involvement Manager, INVOLVE The start of the year is known for new beginnings and promises.  However, these are often made in the post-Christmas haze and many do not last until the end of (dry)...
Tools for patient engagement

Aha moments and body parts at the PM Society meeting

by Ifeanyi Sargeant · January 26, 2018
Something I heard yesterday (Thursday 25 January) at the PM Society meeting – Patient Engagement a real world snapshot, beyond the talk – stuck in my mind. Mark Duman (Patient and NW Service Champion, Diabetes UK) gave body parts a new...
Tools for patient engagement

Patient engagement? No more excuses…

by Nicholas Brooke · January 18, 2018
The transcript from the FDA’s recent public workshop on Patient Focused Drug Development (PFDD) makes interesting reading. The workshop was held in December as part of the FDA’s commitment to develop four guidance documents on...
Patient engagement in practice

Pledge to Patients challenge

by Roxana Radu · November 21, 2017
We are officially launching a 90-day challenge to secure 500 Pledges to Patients in collaboration with INVOLVE, a PFMD member organisation. INVOLVE is one of the few government funded organisations in the world that dedicates its work to...