This project endeavoured to explore the unmet need and co-create a digital health intervention that supports the well-being of women living with and beyond treatment for gynaecological cancer, in order to complement existing care pathways and meet the identified gap. Working in true partnership with Lancaster University and the Clatterbridge Cancer Centre, we embarked on a co-design project through patient and public involvement which had the end users at its heart. This aims included a review of digital provision of information and support for women with attention to well-being, 5 co-design workshops with participants who have undergone treatment and clinical staff, development of a design brief for the digital intervention, co-creation of a digital health intervention in the format of an interactive prototype including testing and exploration of user experience of a prototype.
Following the literature review, patient and staff workshops were co-produced to explore the unmet need and develop a design brief and wireframes. We were keen to employ design methods that involved end users to inform how the design of a technology takes shape, which is crucial in order to gain understanding of lived experiences; without this insight, it is difficult to foresee how patients might experience and value a digital health intervention. A variety of techniques were used within the workshops to elicit and encourage involvement for all participants. Following the workshops, a co-designed brief was developed, which then formed the basis of the wireframes which were shared with participants.
The review found there is currently no specific digital support for this cohort of patients. During the workshops, patients reported there was some post treatment support but generally only covered ‘office’ hours. Participants described how scheduled follow-up appointments mainly had a clinical focus and despite leaflet information being available in abundance, this was perceived as being overwhelming and difficult to take on board. Patients repeatedly reported at the end of the traditional treatment care pathway, after the last cycle of radiotherapy, they felt a ‘sense of loss’ and of ‘falling off a cliff edge’ due to the dramatic drop in support. They felt the introduction of digital support to complement existing care packages would be a real benefit. Having a resource, they could access 24/7, providing information, support and network opportunities was felt to be hugely valuable. We aim to source further funding to develop the intervention.
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