Patient Information on Genomic Test

Patient Organisations

Salivary Gland Cancer UK (SGCUK)

Summary

Roche UK and SGCUK partnered to address an unmet need for clear, accessible information on genomic profiling for patients. Beginning in autumn 2021, the collaboration aimed to co-create a resource that would help patients understand the purpose and potential benefits of genomic testing. Through a co-production model involving clinicians, designers, and patient representatives, the final material—featuring patient videos, QR codes, and downloadable content—was published a year later on SGCUK’s website.

Contracting Process

Both parties were committed to a genuine partnership model rather than a simple financial transaction. This collaborative approach led to the creation of a bespoke working agreement, as standard frameworks were not yet in place. Roche’s legal and compliance teams were instrumental in navigating these novel contractual challenges. SGCUK’s legal familiarity proved beneficial in managing a broad scope of work.

Implementation

Delivery involved a series of virtual workshops due to ongoing COVID-19 concerns, which allowed equitable participation but required considerations for accessibility. Two initial sessions provided educational grounding, followed by material development and review workshops. Feedback indicated a strong preference for less corporate design, leading to user-led style changes. The iterative, user-driven development process ensured relevance, clarity, and resonance with the target audience.

Impact

The project resulted in a trusted educational resource, directly shaped by patients, and tailored to their informational needs. SGCUK gained a meaningful tool to support patient understanding of genomics, while Roche staff—especially those with limited direct patient contact—found the project deeply engaging and insightful. The initiative also highlighted internal opportunities to adapt processes to better support innovative patient partnerships.

Benefits

Impact on Patient Organisations:

Patients received a multi-format, accessible resource that demystifies genomic profiling. Moreover, SGCUK enhanced its educational offering with content rooted in real patient experiences. The project also demonstrated how patient input can improve both content quality and tone, increasing overall impact.

Impact on Industry Partner:

Roche deepened its connection to patient needs and strengthened internal understanding of patient-centred co-creation.

Top tips

Be honest and open with each other on what you want to achieve and build good working relationships.
Be flexible on your final output:
- outcome might be different to your initial expectations
- ensure you are answering people’s questions and addressing the purpose you set
- build trust between all parties.
Contracting took longer than expected. The experience was embraced as an opportunity to learn from each other’s diverse backgrounds.