Case Studies

Patient and Public Perspectives on Advanced Therapies

The Challenge

Over the last decade, new advanced therapy medicinal products (ATMPs) have been developed to treat various cancers, inherited diseases and chronic conditions. Although they offer ground-breaking new opportunities for the treatment of disease and injury, the uptake of these therapies requires appropriate patient and public engagement and buy-in.

There is therefore a need to offer patients and their families educational resources which provide accurate, relevant and valued information about ATMPs in order to increase their knowledge and understanding and empower them in making decisions about these therapies, which may also potentially improve patient recruitment for ATMP trials.

The solution

In order to gain an initial understanding of patient perspectives of ATMPs, a comprehensive systematic review of published literature on the subject was recently conducted within the MW-ATTC (Aiyegbusi et al 2020, Nature Communications). The high-impact review included 35 publications and summarised findings on patient concerns, expectations and information needs relating to ATMPs.

The results

The systematic review revealed a number of misconceptions about ATMPs among patients and the general public. The review also highlighted a lack of accurate information and clarity about the potential benefits and risks of these novel therapies. These issues have led to over-optimism in some patients and a lower level of acceptance in others. Acceptance of cell and gene therapies varied among patients but generally increased after the provision of information.

Making further impact

Utilising the results of the systematic review, particularly the gaps in educational resources which were highlighted, the MW-ATTC are developing a series of informational webinars aimed at patients and the public which will be delivered virtually in the summer of 2021. Additionally, patient and public partners in MW-ATTC focus groups will contribute to the shaping and creation of new materials within the centre which will address topics identified in the review.

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