PARADIGM is currently conducting a survey that will help determine stakeholders’ needs and expectations for Patient Engagement in the medicines research and development lifecycle. Here, we speak to some members of the survey-building team about what they would like to achieve.

Can you tell me what you wish to achieve with the survey?

Daphnee Pushparajah of UCB: That we gain an understanding of what patient engagement means to the community and we hear from them about what is needed in order to make this happen.

The IACS team: The survey is a unique opportunity to take a peek at what’s more relevant, in terms of needs and expectations, for those working in PE for medicine development. In a way, it can help us to – sort of – be in their shoes, and that’s the best starting point for ensuring PARADIGM produces something meaningful and actually useful.

Chi Pakarinen, The Synergist: I hope we get so many responses that it will inform us in our next steps to create the kind of tools everyone needs to do more PE. Ultimately I hope that this survey is the tool for PARADIGM to create meaningful support for those who need it in order to do more PE, that will benefit patients.

Dr Suzanne Ii, Centre for the Advancement of Sustainable Medical Innovation (CASMI): By gathering the results from the survey, we can have insight to understand the current landscape of patient engagement and how we can address the needs of various stakeholders, but ultimately how we can make healthcare better and more accessible to patients.

Why is it important to gather a wide range of responses?

DP: To understand the expectations of all the actors involved in patient engagement, we need different sources and range of responses to the survey.

IACS team: A wide range of responses ensures that the results of the survey and the conclusions we get from it are as close as possible to reality, which is essential if we want PARADIGM to make valuable contributions to the status quo of PE in medicines development. Moreover, we are dealing with a heterogeneous landscape of stakeholders, which makes it even more important to have all views properly represented.

CP: The wider range of responses we get, the better we’ll be able to tailor the outputs of PARADIGM to fit the needs of stakeholders doing PE.

SI: If we are able to understand patient engagement from the various perspectives of all of the stakeholders we can identify how patient engagement can be improved, particularly where there is still limited access to the patient voice. For PARADIGM, the three decision-making points in particular are addressed where there is limited patient engagement and we need to address the challenges that face all of the stakeholders in order to make the process effective, efficient and sustainable.

What will the responses mean as PARADIGM progresses?

DP: The responses will be used to inform other project deliverables so it’s important to collect as much meaningful information as possible – remember we will get out what we put in!

IACS team: As PARADIGM progresses, the responses can be a good way to see how far we’ve come. They can be a good reference as to where we started and where we stand with regards to understanding and internalizing the stakeholders’ needs and expectations.

CP: I think it is a kind of “sanity check” while we want to co-create useful tools, we also need to know where everyone is in their personal PE journeys. This means that the more responses we get, the better analysis we’ll be able to make regarding the current expectations for PE.

SI: As PARADIGM progresses, we will be able to create a framework that can aid people and build on what we are learning through the process of the current patient engagement landscape.  The responses will give us an idea of what we need to pursue as we progress and the answers that still need to be discovered as the process continues on in the project.