Wanted: patient engagement co-creators

by | 10 Dec 2018

PFMD is inviting the patient engagement contributors community to join a global collective effort to advance patient engagement
Patient-Focused Medicines Development (PFMD) welcomes expressions of interest to join patient engagement work streams in 2019. The move will kick-start a busy year, leading to concrete results by Q1 2020.
The call was announced during a well-attended webinar on 4 December at which PFMD unveiled some of the top-line insights of a public consultation that took place during the summer. The survey, answered by 133 individuals and stakeholder groups 26 countries, explored the state-of-play with patient engagement across the medicines development lifecycle. Interestingly, there was a strong participation rate from outside the EU and US which are often seen as the frontrunners in patient engagement.
One of the key findings was that most PE experience has been built in the clinical trials stages (phases I-III), suggesting more should be done in the post-marketing and regulatory phases. Further detail of the results of the consultation will be published in early 2019.
Moving forward
The consultation exercise helped to focus the work of PFMD as it enters a new three-year cycle. Opening the webinar, Nicholas Brooke, PFMD CEO, reflected on the shared achievements of the previous working groups that collaborated closely since the launch of the initiative in 2016. Together, they have mapped existing PE frameworks, built a repository of PE initiatives through the Synapse portal, created a Book of Good Practice and published the Patient Engagement Quality Guidance.
The PFMD Board met in November to chart the path forward. Future initiatives will see some of the good practices developing into training modules, the creation of ‘How to’ modules, and work on new tools that the PE community needs including a PE self-assessment tool and a fair market value calculator.
PFMD is also working with PARADIGM, an EU project; engaging with the FDA at the regulatory level, and working with the National Health Council in the US and WECAN in Europe on a number of initiatives.   
How to help
Applications from health professionals, patients and patient representatives, regulators, industry, academia and others will be welcomed until December 21. The PFMD team will form balanced working groups – ensuring a mix of experience, expertise, stakeholder diversity and geographical balance – by mid-January. Kick-off calls for the working groups are envisaged for late January (28-31). Interested participants should complete an application, outlining their areas of interest and expertise.
‘We see the Working Groups as having a one-year duration,’ said Anne-Marie Harmoir, consultant at PFMD. ‘By Q1 2020, the groups should have delivered some priority modules, marking an important contribution to making PE happen.’
Dawn Richards, Director of Patient Engagement, Clinical Trials Ontario and Vice President of the Canadian Arthritis Patients Alliance, said her experience of co-creating with PFMD work streams has been very positive. ‘I’ve worked with the PFMD team for almost two years. They made it very simple for a group that was located around the globe to collaborate together,’ she said.
The work was completed through a combination of virtual and face-to-face meetings of people with a diverse mix of expertise. ‘It was a really nice experience. The team I worked with was from around the globe and it is really rewarding today to see the products that we have developed being highlighted at conferences and taken up by the community.’


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