PFMD member Anton (Tony) Hoos, Head of Medical for Amgen Europe discusses how developments in patient engagement are transforming drug development and access to medicines for patients in a video filmed at the DIA 2016 conference:
Kim McCleary Managing Director of FasterCures, a centre of the Milken Institute shares her views on the growing commitment to ensuring better patient engagement in a video filmed at the DIA 2016 conference:
Nirmala Singh, formerly Patient Engagement Director at the National Kidney Foundation shares her views about the effect patient engagement will have on the healthcare sector in a video filmed at the DIA 2016 conference:
Theresa Mullin, Director of Strategic Programmes for the U.S. Food and Drug Administration (FDA) Centre for Drugs shares her views about the importance of recognising patients and caregivers as experts in a video filmed at the DIA 2016 conference:
PFMD member Roslyn Schneider, Global Patients’ Affairs Lead at Pfizer discusses emerging trends in the development of meaningful patient engagement in a video filmed at the DIA 2016 conference:
“The most important trends I see emerging today are a stronger commitment to patient engagement and more collaboration. I see collaborations that go across companies, advocacy groups, regulators and academics.
Also, the questions are different now. The questions have moved from ‘Why should we be doing patient engagement?’ to ‘How should we be doing it?’.
Better patient engagement in medicine development begins with understanding and categorizing the existing landscape.
PFMD has developed and launched an online mapping and networking platform that captures, maps and categorizes patient engagement initiatives from across the globe. The platform facilitates networking and collaboration, and will be used to incorporate best practices into an integrated patient involvement framework.
PFMD published its inaugural paper, entitled Culture and process change as a priority for patient engagement in medicines development, in the peer-reviewed journal, Therapeutic Innovation & Regulatory Science (TIRS).
The complexity of medicines development and urgency to deliver effective patient engagement necessitates a phased working approach to the development of a meta-framework for patient engagement- PFMD’ end goal.
PFMD is taking a rational and methodological approach to co-create a meta-framework with key stakeholders in 4 key steps:
“How can we ensure that medicines and health solutions are made WITH patients not just for patients? What is your vision for meaningful patient engagement? What is your #PEmoonshot?”
We want to hear your thoughts on what patient engagement would look like in an ideal world. We want you to dream big — forget limits and embrace possibilities…
- Imagine if… every patient who wants to has a voice in defining their own care
- Imagine if … patient needs and priorities were at the heart of every decision on health interventions and systems
- Imagine if… 1 million patients were involved in co-designing research and the development of medicines globally
Nicholas Brooke, Chief Executive of Patient Focused Medicines Development, explains what the global patient engagement mapping and networking tool launched this month means for patients and other health stakeholders.
We hear a lot about patient engagement but often focusing on making patients adherent or compliant to a medical course of action. Patient engagement is much more than this – it’s about striving to ensure patient input across the whole spectrum of healthcare – right from the beginning when we set the research agenda through to development and availability of health interventions. There are lots of patient engagement initiatives taking place but no unifying platform where you can get a clear picture of the type and scope of initiatives. There are also different ways to engage, as well as different requirements in terms of patient expertise and experience so it’s important to differentiate between these and their associated roles.
Without this knowledge of the patient engagement landscape, it will be impossible to identify and spread good practices to deliver meaningful patient engagement. Many patients want to have their input – they want to get involved and some have made great efforts to get up to speed and improve their health literacy so they can provide valuable input. But, how do we match patients with initiatives – how do we harness patients’ skills and how do patients find out where they can add most value?