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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

Building the next generation of patient advocates

by Danielle Barron · October 5, 2018
Interview with Dr Derick Mitchell, Chief Executive of  Irish Platform for Patient Organisations, Science & Industry (IPPOSI) As patient engagement reaches a tipping point, it’s worth looking back at some of the original players in...
PFMD partners & projects

FDA prioritizes patient engagement

by Danielle Barron · October 1, 2018
The past two decades have witnessed the evolution of patient engagement as a priority at the Food and Drug Administration (FDA) in the US. Since the first patient group was established for HIV/AIDs patients in 1988, the FDA has been slowly...
The impact of patient engagement

Pledging to patients: what can you to do enhance patient engagement?

by Gary Finnegan · September 28, 2018
Dr Cyndi Grossman, Director, explains why FasterCures, a center of the Milken Institute  is encouraging patient engagement advocates to take the PFMD pledge In the coming weeks, FasterCures aims to increase the number of pledges to 1,000...
Patient engagement in practice

Penning the Book of Good Practices

by Danielle Barron · September 21, 2018
Earlier this year, PFMD launched the first edition of the Book of Good Practices in patient engagement. The unique book details a first wave of dynamic and innovative working examples illustrating the Patient Engagement Quality Guidance....
PFMD partners & projects

5 minutes with….the World Alliance of Pituitary Organizations (WAPO)

by Gary Finnegan · September 17, 2018
As part of our series to help the patient engagement community get to know one another, we spoke to Sheila Khawaja and Muriel Marks, board members of the World Alliance of Pituitary Organizations (WAPO).  What is WAPO? Muriel: We are an...
PFMD partners & projects

EUPATI Belgium prepares for take-off

by Danielle Barron · September 7, 2018
The European Patients’ Academy on Therapeutic Innovation (EUPATI) aimed to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement therein. Funded by the...
PFMD partners & projects

Empowering patients to participate in innovation

by Danielle Barron · August 27, 2018
 Interview with Tony Hoos, PFMD board member and VP Medical, Europe, Amgen.  The European Parliament, along with the European Federation of Pharmaceutical Industries and Associations (EFPIA), recently played host to a wide range of...
PFMD partners & projects

Patient Engagement Quality Guidance highlighted at Miami meeting

by Danielle Barron · July 26, 2018
Interview with Roslyn Schneider, Global Patient Affairs Lead of Pfizer and PFMD Board Member. The PFMD Patient Engagement Quality Guidance is global in its intent, and multinational in its creation. Thus it makes sense that it garnered...
Patient engagement in practice

Co-creation by motor neurone disease patients and researchers

by Gary Finnegan · July 9, 2018
People with motor neurone disease (MND) have worked with doctors, designers and engineers to develop a device that improves their quality of life. The ‘HeadUp’ collar is the result of a five-year project led by the University of...
Patient engagement in practice

Don’t talk about patients, without patients

by Gary Finnegan · June 25, 2018
Interview with Bernadette Hendrickx, Scientific Advisor to PFMD, CEO and Founder SAHB Consulting The ISPOR conference highlights major advances in technology, real-world evidence and patient-centricity but more patient input is still...