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Patient health data: translating stories into science

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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Building the next generation of patient advocates

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...

FDA prioritizes patient engagement

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...

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

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...

Penning the Book of Good Practices

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....

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

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...

EUPATI Belgium prepares for take-off

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...

Empowering patients to participate in innovation

 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...

Patient Engagement Quality Guidance highlighted at Miami meeting

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...

Co-creation by motor neurone disease patients and researchers

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...

Don’t talk about patients, without patients

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...