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?
That’s where Patient Focused Medicines Development mapping and networking tool comes in. It captures and maps key information from patient engagement initiatives around the world. But importantly the tool is not just about providing the big picture overview of patient engagement, it’s a way of untangling the myriad of patient engagement initiatives into an understandable structure with logical categories so that it becomes valuable and useful. Designed with the end-user in mind the tool provides a global ‘Who’s Who’ of patient engagement and allows users to search for and find potential partners.
We have this landscape – this ecosystem of patient engagement. We also have a fertile environment for progress being nurtured with a growing commitment to achieve meaningful patient engagement across all stakeholders. Until now, what we did not have was a way of connecting the dots – building networks and getting stakeholders working together to reach common objectives. That’s what the mapping tool will do – it will help us to connect the dots in patient engagement.