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Patient perspectives on publishing research outcomes

Alexandra Moutet, Patient Engagement
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Alexandra Moutet, Patient Engagement
At UCB, we strive to put patients first in everything we do. This means integrating patients into all the activities along the development lifecycle to meet their needs and expectations more effectively.

A natural extension of this approach to research and innovation is to involve patients in the dissemination of our research. With this in mind, UCB is embracing an innovative way of shaping our publication planning process.

We have worked with patient partners, publication professionals and our internal experts to devise a framework for establishing Patient Publication Steering Committees (PPSCs). The feasibility of developing a PPSC was shared at the DIA Annual Meeting held virtually from June 14-18.

The purpose of the PPSC is to plan and oversee the timely and ethical development of high-quality publications that address unmet and important information needs, as identified by people with the experience of living with specific diseases. This could relate, for example, to  disease burden and the patient healthcare journey. It is an approach that ensures the patient voice is heard at every stage of  development.

“Establishing a PPSC can help guide who should be involved in the development of the publications and where they should be disseminated, to ensure maximum reach to relevant audiences” explained Trishna Bharadia, Patient Engagement consultant involved in the development of the framework.

We have now established the criteria for selecting PPSC members, developed a draft PPSC charter defining roles and responsibilities, drafted operational documents, and identified suitable therapeutic areas for a pilot. The documents adhered to plain language principles, met readability targets, and were deemed suitable for patients.

Our first PPSC will help to complete the co-creation of key governance and operational documents. This will provide the foundation from which our PPSC can build a publication plan that will identify topics, timelines, target conferences and journals to maximise the impact of our patient-centred scientific work.

At UCB, we see PPSCs as one of the next steps in our journey to deliver patient value. They will strengthen our commitment to patient communities by involving them in our efforts to meet their needs and expectations more efficiently. We hope this innovative step forward will contribute to writing the next chapter in the history of patient-centred care.

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Posted by Peter Bates, 21 June 2020

This looks good, but I am not entirely clear about the reach of the PPSC. Is it narrowly focused on patient-facing publications, leaving all publications targeted at healthcare professionals, funders and researchers beyond it's remit?

Posted by UCB

Many thanks for your inquiry. The remit of the PPSC will be to co-create a Publication Plan based on non-product specific publications such as manuscripts on disease burden, unmet need and the patient journey, however the audience will include HCPs, funders and researchers as the manuscripts will be published in the peer-reviewed medical literature.