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....
Read more
Filter by:
Sort by

More Stories
Patient engagement in practice

What expertise is required to make an impact in patient engagement?

by Gary Finnegan · May 12, 2022
Patient engagement remuneration: what are the capabilities, skills and expertise  needed to engage with pharma on medicines development? The answer depends on the activity in question.  The publication of Global Remuneration Principles...
The patient's corner

New European health partnership promises to boost patient involvement 

by Gary Finnegan · March 25, 2022
The newly unveiled European Health Initiative ‒ the world’s largest Public Private Partnership in the life sciences with a €2.4 billion budget ‒ aims to include patients at every stage of its research projects. Applications for its...
The patient's corner

Are cardiovascular patients ready for the digital revolution? 

by Gary Finnegan · December 13, 2021
The adoption of digital technologies has accelerated dramatically during the pandemic. Now patients want more influence on how technologies are designed and how their data is handled  The digital tools needed to support remote...
Patient engagement in MedTech

How tailored training and guidance could help medtech involve patients

by Gary Finnegan · October 27, 2021
The medical technology sector has been slow to see the value of patient engagement. Now a new suite of tools — co-created by patient advocates and industry insiders — offers practical ways to put patients at the heart of its work  The...
Tools for patient engagement

Patient remuneration: have your say

by Gary Finnegan · October 25, 2021
Now is your chance to help to share harmonised global principles on remunerating patients for interactions with industry  As patients and industry move towards new standards on how the patient community collaborates with healthcare...
The impact of patient engagement

Wanted: a global approach to patient remuneration

by Gary Finnegan · October 6, 2021
Patients should be compensated for their contributions to public engagement activities. A new project aims to co-create global tools to enable ethical, transparent, fair interactions between the patient community and pharmaceutical...
Patient engagement in practice

Fast-moving medtech accelerating pivot towards patient engagement

by Gary Finnegan · September 14, 2021
Pharma got a head start on working with patients, but some medical technology companies could catch up quickly if they have the right tools, templates and examples of success  The medical technology sector is large, diverse and populated...
The impact of patient engagement

Digital health: how patients can shape responsible data management 

by Gary Finnegan · August 23, 2021
Big data has big potential to change healthcare. But, if patients are to buy into this vision of the future – and share their data – the benefits to their care must be made clear    The capacity of digital tools to...
The patient's corner

Hearing the voices of children in medicines R&D

by Gary Finnegan · August 23, 2021
The views of patients are too often ignored by researchers. Now some clinicians and companies are seeing the value of engaging with younger people  Young patients are up against it. Depending on their illness, they may feel very unwell,...
Uncategorized

PEOF 2021 How to Connect Patients to Digital Health

by Danielle Barron · June 11, 2021
Google the phrase “digital health” and you’ll get roughly 50 million results. But what does it actually mean for patients in practice?    An umbrella area allowing exponential scaling in terms of data, networks, information,...
Patient engagement in practice

Putting cardiovascular patients at the heart of the technology revolution

by Gary Finnegan · June 3, 2021
The Global Heart Hub is empowering patients to play a central role in improving their health care. Its founder, Neil Johnson, sees opportunities for medtech and digital health companies to engage with people affected by cardiovascular...
Patient engagement in practice

The road to patient-centred medtech

by Gary Finnegan · May 28, 2021
As medical technology companies become more patient-centred, industry leaders seek to enter the patient engagement fast lane. There is still some distance to travel. The medical technology sector is highly diverse, populated by thousands...
Patient engagement in practice

Virtual events: tips for patient organisations

by Gary Finnegan · March 4, 2021
As more patient advocates embrace online meetings, what’s the secret to attracting, engaging and keeping your audience? A series of webinars takes you through the 33 questions you need to ask to create impactful events.    The...
The patient's corner

The challenges of engaging patients with rare diseases 

by Gary Finnegan · February 26, 2021
Patient engagement requires a critical mass of patients with the time, expertise and language skills to work with medicines developers. For rare diseases, these patients are hard to find, but EU initiatives offer...
The patient's corner

Coping with COVID: Pandemic putting pressure on vulnerable patients 

by Gary Finnegan · February 3, 2021
Vulnerable patients are at risk of serious illness if they are infected by the SARS-CoV-2 virus. By disrupting research, clinic visits and patient engagement meeting, the pandemic will also have a long-term impact, writes Gary...
Patient engagement in practice

“A pioneering opportunity”: piloting the first How-To Guide

by Danielle Barron · January 26, 2021
Danielle Barron speaks to Schiffon Wong, Executive Director, Global Evidence & Value Development at EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, about how piloting the new “How-To Guide for Patient...
Uncategorized

How patients can make a real impact with virtual events

by Gary Finnegan · January 13, 2021
The pandemic prompted patient organisations to go digital, but many lacked the know-how to host high-impact online meetings. Now, faced with ‘Zoom fatigue’ and shrinking resources, a free webinar series is offering patient...
PFMD partners & projects

‘COVID-19 survivors are coming out as kidney patients’ 

by Gary Finnegan · January 6, 2021
The pandemic prompted the National Kidney Foundation to radically change how it works, compromising fundraising drives – just as demand for its services increased Like all patient organizations, the NKF was hit with major disruptions...
The impact of patient engagement

Bringing the trial to the patient

by Danielle Barron · December 16, 2020
Gilead’s endeavours in patient engagement may still be in their infancy, but Head of Technology and Innovation Matt Bryant tells Danielle Barron that the organization is striving to use innovation to transform the patient experience of...
The patient's corner

Supporting arthritis patients through the pandemic 

by Gary Finnegan · December 15, 2020
Due to COVID-19, patients have faced cancelled clinic visits and disruption to clinical trials. The Arthritis Foundation is working to support them through the crisis, despite significant challenges to its fundraising...
The impact of patient engagement

Pandemic hits patient engagement 

by Gary Finnegan · December 3, 2020
Interview: COVID-19 makes physical meetings more difficult, but there is a silver lining: virtual meetings can have lowered cost barriers and reduced the burden of travel. The challenge now is to make online connections more meaningful,...
Patient engagement in practice

Is MedTech ready for patient engagement? 

by Gary Finnegan · November 23, 2020
The medical technology industry is slowly expanding its patient engagement work. Barry Liden, Edwards Lifesciences, explains why the sector is playing catch-up and how listening to patients can add...
The patient's corner

COVID-19’s twin threat for cancer patients

by Gary Finnegan · November 20, 2020
Cancer patients face additional risks if they develop COVID-19, but many are also suffering as services are curtailed. People with cancer may even face discrimination if ICU beds are in short supply. How can cash-strapped patient advocates...
Patient engagement in practice

Patient engagement training: changing company culture one step at a time

by Gary Finnegan · November 12, 2020
MSD rolled out the first module of the PFMD training course in early 2020. Jan Nissen, Vice President of Patient Innovation & Enterprise Communications for MSD, says the company is achieving culture change organically rather than...
The patient's corner

How COVID-19 changes clinical trials – for good

by Danielle Barron · August 31, 2020
Pandemic sees clinical trials halted but some go virtual, benefiting patients, writes Danielle Barron With everything else upended by the coronavirus pandemic, it’s no surprise that clinical trials have also fallen victim to widespread...
Tools for patient engagement

The final piece of the puzzle: capacity building in patient engagement

by Danielle Barron · June 24, 2020
Pharmacist Anne-Lise Ducournau Lichtenberg explains what the PFMD How-To module on Capacity Building is and why it is essential that every actor in the patient engagement ecosystem can access relevant and up-to-date educational content to...
Patient engagement in practice

Protecting everyone’s interests: the RAPP project

by Danielle Barron · May 13, 2020
The result of a truly collaborative project, a series of reasonable legal agreement templates, offers protection for both patients and pharmaceutical companies, explains Federica Castiglione of Novartis Achieving meaningful patient...
Patient engagement in practice

Involving patients in drug development – from the start

by Gary Finnegan · May 12, 2020
Patient engagement in preclinical research is a new phenomenon. Dr David Feldman, National Kidney Foundation, says a forthcoming PFMD How-To Guide will help connect researchers and patients in the earliest stages of medicines...
Patient engagement in practice

Training can help to build capacity for patient engagement

by Gary Finnegan · May 5, 2020
Prof Benedikt Van Nieuwenhove, Managing Director of ECCRT, discusses the forthcoming PFMD ‘How-To Module for Capacity Building’ and how the COVID-19 pandemic is shifting attitudes to online...
Patient engagement in practice

Ensuring the patient’s voice is heard

by Danielle Barron · April 23, 2020
Esther Krofah, MPP, is the executive director of FasterCures, a center of the world-renowned Milken Institute. Having recently joined the board, she brings her extensive experience in the government, nonprofit, and for-profit sectors to...
Patient engagement in practice

“We need to take patient involvement to new levels”

by Danielle Barron · April 21, 2020
Dr Sanja Njegic is the Global Head of Patient Partnership at F. Hoffmann La-Roche Ltd (Roche). She is responsible for facilitating early and systematic engagement with patient communities across the product lifecycle through...
Patient engagement in practice

‘We need to build infrastructure to support patient-centricity’ 

by Gary Finnegan · April 15, 2020
Dr Anthony Yanni, SVP and Global Head, Patient Centricity at Astellas, brings clinical and industry experience to the PFMD Board. His recipe for advancing patient engagement centres on establishing systems to maximise how patient insights...
Patient engagement in practice

Nobody has ever regretted patient engagement

by Danielle Barron · March 30, 2020
David Haerry has been an active patient advocate since 1997. A prominent member of EUPATI, David was also involved in several European and global research networks and research collaborations. He co-chaired the Patient and Consumer Working...
Patient engagement in practice

Acknowledging the value of patient input

by Danielle Barron · February 5, 2020
When it comes to ascribing value to patient involvement in the development of innovative medicines and med-tech, different stakeholders may have different perspectives. That was the finding of an interesting new report commissioned by...
Patient engagement in practice

5 minutes with… the American Migraine Foundation

by Gary Finnegan · January 9, 2020
As part of our series to help the patient engagement community get to know one another, we spoke to Nim Lalvani, Executive Director of the American Migraine Foundation, about advocacy and involving patients in scientific advisory...
Patient engagement in practice

Unlocking the potential of cohort studies

by Gary Finnegan · October 4, 2019
Research studies following groups of individuals can answer vital medical questions, such as why people suffer from a health problem; or what determines recovery. They are, however, expensive and cannot always be applied broadly. Synchros,...
Patient engagement in practice

A PE trailblazer committed to improving patients’ lives

by Danielle Barron · September 23, 2019
In a fragmented and fast-evolving patient engagement landscape, the need to align stakeholders, harmonise approaches and perspectives and share best practices is critical as we strive to deliver better patient outcomes and drug development...
Patient engagement in practice

Developing the patient engagement system

by Gary Finnegan · September 19, 2019
Nicholas Brooke, CEO of PFMD, tells Gary Finnegan why solving the patient compensation conundrum will unlock the power of patient engagement Patients, industry and regulators are making patient engagement (PE) the norm in medicines...
Patient engagement in practice

Doctors are paid for their expertise, what about patients?

by Gary Finnegan · September 5, 2019
Patients are increasingly seen as playing a valuable role in setting research priorities, designing clinical trials and informing market access decisions. But sometimes they are the only people in the room expected to give their time...
Patient engagement in practice

How the National Kidney Foundation is piloting the PEQG

by Danielle Barron · July 25, 2019
The National Kidney Foundation is the leading organisation in the US dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and...
PFMD partners & projects

Putting patient engagement on the map at ISPOR US

by Gary Finnegan · July 18, 2019
Dr Oleksandr Gorbenko displayed a PFMD poster at the New Orleans conference, attracting strong interest from experts in health economics and outcomes Patients are increasingly involved in clinical research as companies and academics seek...
Patient engagement in practice

Making the case for patient engagement

by Danielle Barron · July 8, 2019
Danielle Barron speaks to MediPace founder Guy Yeoman about his latest efforts to spread the word on patient engagement.  When it comes to patient engagement, empowerment is the name of the game. That’s according to Guy Yeoman, founder...
Patient engagement in practice

EU must prioritise patient engagement in health research 

by Gary Finnegan · June 26, 2019
The European Commission, health industry organisations, and patient groups are busily crafting a bold new public-private partnership. Citizen and patient involvement will be a key focus. With plenty of existing tools to help make patient...
Patient engagement in practice

How Parkinson’s UK is piloting the Patient Engagement Quality Guidance

by Gary Finnegan · June 11, 2019
Parkinson’s UK is the UK’s leading charity supporting people affected by Parkinson’s, a neurological condition for which there is currently no cure. The charity’s mission is to find a cure and improve life for everyone affected by...
Patient engagement in practice

EU researchers to have access to ‘pool’ of patient experts

by Gary Finnegan · June 3, 2019
The value of including patients in medical research is now widely accepted. Yet one of the challenges for scientists and companies keen to embrace the concept of patient engagement is identifying suitably-qualified patient experts to work...
Patient engagement in practice

FDA calls on industry to speed up trials process

by Nicholas Brooke · April 29, 2019
The FDA appears to be taking its regulatory role to new levels as it seeks to shape a better medicines development ecosystem. The recent statement by FDA Commissioner Dr Scott Gottlieb focused on new strategies to modernise clinical trials...
PFMD partners & projects

Different patients, different solutions: PFMD at the EFGCP Annual Meeting

by Danielle Barron · March 18, 2019
Danielle Barron speaks to PFMD co-founder Tony Hoos about his recent participation at the EFGCP Annual Conference in Brussels What is an acceptable level of uncertainty? What is an acceptable benefit/risk ratio? These questions and many...
Patient engagement in practice

The wide-ranging impact of patient access

by Danielle Barron · February 27, 2019
Patient engagement means opening the door to patients for meaningful dialogue and contributions. A recent op ed in In Vivo explored several ways in which patient access can truly permeate the entire patient journey, especially in relation...
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....