Just over 10 months ago we launched the PFMD Global Mapping and Networking tool – a dynamic user-populated platform that categorizes and ‘maps’ patient existing initiatives, frameworks and organisations. The goal is to capture the patient involvement practices and its experts and gather them in one place to categorise them and feed the research and work on this issue as well as identifying good practices and share them. We urged those involved in patient patient engagement to ‘get on the map’ and had a tremendous and growing response to this call to with 113 organizations and 172 initiatives already in the tool. For the first time we are moving towards a global overview of what’s happening and Who’s Who in patient engagement.
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?