Figshare - IEEPO 2021 Survey_Results (1).xlsx (5.05 MB)

IEEPO Community Survey Results 2021

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The IEEPO community survey was commissioned by the International Experience Exchange for Patient Organisations (IEEPO) External Advisory Committee following results of the pre-event survey from the IEEPO Kick Off event in March. The pre-event survey highlighted the patient committee's interest in a position paper and in the topic of humanising healthcare post-pandemic.

In response to this pre-event survey IEEPO delivered a position paper through the MAKE domain entitled ‘Humanising Healthcare: a call for transformational change’ on during the IEEPO ‘Think Global, Act local’ event (8th November). The position paper addresses the issue of building trust in healthcare systems & humanising healthcare and calls for a mindset shift to achieve this change.
The position paper is co-owned and validated by the IEEPO patient community through:

· The IEEPO community survey

· Best practice case studies from the community

To support the development of the publication an online survey, using GetFeedback software, was distributed to the IEEPO patient community in August 2021 and was open until 30 September 2021. The survey received 304 responses from across the following regions: Europe, US/Canada, Asia Pacific, Latin America and Middle East & Africa.

Composed of both quantitative and qualitative questions, the survey was designed based on input from IEEPO’s external advisory group (EAC) as well key insights from an earlier survey linked to the IEEPO 2021 THINK event (March 2021). The survey was made available in 6 languages available to ensure inclusiveness of patient communities across the world.

To analyse the survey data from a Global and Local lens, responses were segmented into regional and demographic breakouts. Due to geographical locations of the EAC, the survey received limited responses from US/Canada. In order to translate the open-ended responses, Google AI was used.

For any use and/or publication of the data, please send an email to with details of the publication.

Please note that the data provided is from a non-representative patient community survey conducted by the IEEPO initiative and this should be taken into account when analyzing and evaluating the data. Any publication or other use of the data must include, in addition to the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, a statement that the data is derived from a non-representative patient community survey conducted by the IEEPO initiative.

This material is released under Creative Commons Attribution-NonCommercial-ShareAlike4.0 International license (CC BY-NC-SA 4.0). You may share (copy and redistribute) and adapt (remix, transform, and build upon) this. However you must give appropriate credit to the External Advisory Committee from the International Experience Exchange for Patient Organisations (IEEPO) and its co-creation partner Roche, a license notice, and a link to the original material as co-created in August/September 2021. If you build upon this material, you must distribute your version under the same license as the original (CC BY-NC-SA 4.0).


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