Health stakeholders urged to ‘get on the map’ as online collection tool to capture global patient engagement goes live

logoHealth stakeholders are being urged to ‘get on the map’ using an online collection tool which went live last month and is designed to capture key information from patient engagement (PE) initiatives across the globe.

Data collected through the tool will be used to produce a series of overview ‘maps’ of the PE landscape in the lifecycle of medicines development that will portray the global PE landscape through various perspectives to make them meaningful to diverse stakeholders. The maps will provide a searchable and dynamic ‘who’s who’ of PE (more details and map visuals available from here).

The tool has been developed by Patient Focused Medicines Development (PFMD –  – a multinational coalition that aims to embed patients as active partners in the design and development of research and medicines. The collection and mapping initiative is being launched as health stakeholders gather at the DIA 2016 Annual Meeting in Philadelphia.

A unique report with visual mapping snapshots will be generated for each organisation or user that enters data. The report will show where their initiative ‘fits’ in the landscape according to a range of factors including focus area, therapeutic area, geographic scope, degree or spectrum of patient involvement, and level of patient expertise. A key feature of the tool is that information about each initiative will be entered by those directly involved – rather than relying on desk research alone – providing a greater opportunity to understand PE efforts, including their successes and limitations.

Much information on PE is not routinely published but instead is shared in meetings and discussions. As a result, there is a need for a pro-active collection process to gather data where there may be no documentation publicly available.

“This is why the new online collection tool has been developed. It will capture quality data using pre-defined standards to allow for consistency in depiction and will also help to ensure that the information collected across various initiatives is credible, consistent, and up to date,” said Nicholas Brooke, PFMD Chief Executive.

“Our end goal is to develop an efficient, measurable and reliable meta-framework for PE that involves patients as partners. But this cannot be achieved without knowing, understanding and learning from the many initiatives that already exist – this is what the mapping project has been designed to achieve.  We urge everyone committed to more effective and meaningful PE to access the collection tool and enter their data to make sure their initiatives get on the map,” said Brooke.

The online collection tool developed by Patient Focused Medicines Development (PFMD) is now open for users and organisations to enter their data and can be accessed here.

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