Partnering with the NIHR and young people on clinical research
Patients’ voices are integral to shaping clinical research and development.
Pfizer recognises that patients and caregivers are the experts in their conditions and that their lived experience is invaluable in creating successful and accessible clinical trials. Diversity and representation in the patient communities we partner with is key in ensuring that underrepresented groups are also involved in impacting clinical research.
Pfizer has a long-standing partnership with the National Institute for Health Research (NIHR) Clinical Research Network (CRN),1 and we work together to engage patient insights. The NIHR is a government organisation that funds and delivers research into health and care. It has established national frameworks that enable organisations to easily engage with patient communities and is involved in facilitating patient partnerships with scientific organisations.
In 2018 we further collaborated with the NIHR on a new project when it launched its Patient Engagement in Clinical Development Service.2 This service aims to shape clinical research through collaboration between life sciences companies and patients. Since its conception, Pfizer has worked with the NIHR on 15 separate patient engagement partnerships.
The pilot of this service included an adult and paediatric clinical trial.2 As part of this, the NIHR connected Pfizer with GenerationR, a Liverpool-based Young People’s Advisory Group (YPAG). YPAGs are communities of young people who collaborate with researchers, inputting their opinions and insights to impact clinical research design and delivery.
Pfizer’s engagement with GenerationR led to unexpected and fascinating insights and resulted in changes being made to the trial documentation including:
- The addition of images that were considered more appealing in the informed consent documentation (cartoons replaced with real-life images)
- Explanations as to why blood tests needed to be performed
- Clear explanations of how the investigational drug acted in the body
Sophie Evett, Senior Director, Feasibility Group Lead at Pfizer was involved in the engagement and says, "Engaging with young people was fantastic for our researchers, and their insights were revelations for us. Our partnership with GenerationR led to many improvements in the design of the informed consent documentation for an eczema clinical trial."
Our patient partnerships have also underscored the importance of diversity and representation in our research groups to better enable a wider group of participants to co-design clinical trials. It’s crucial that we continue to engage patients from all walks of life as we know that those who are underrepresented in clinical research are likely to be underrepresented in health care settings as well.
Our project with the NIHR further showed how insightful young people’s perspectives are and the importance of listening to their experiences and opinions. Adit Bassi was a member of GenerationR during this project and says, "Young people’s preferences are changing every day and researchers now see us as truly beneficial to the clinical trials they’re designing. There is huge potential for young people to improve clinical research so every effort must be made to reach out to all demographics and communities."
Theo Christie is a Business Development Manager at the NIHR and says, "Pfizer was the first company to pilot our Patient Engagement in Clinical Development service and it’s fantastic to see more companies beginning to seek greater engagement with patient communities. We’re now reaching out to a wider range of patient groups to ensure that clinical research is accessible for all. Our shared vision is about bringing new and effective drugs to market, and the sooner we get there the better."
At Pfizer, we’re making sure that we engage with patients and caregivers from the outset of clinical trial design to ensure that our research is accessible and meaningful for all groups. With continued collaborations such as with the NIHR’s Patient Engagement in Clinical Development Service, we can further ensure that patients from all backgrounds and communities are meaningfully listened to and have the opportunity to shape and co-design clinical research.
- Pharma Times. Pfizer teams up with NIHR Accessed March 2022.
- NIHR. Case study: Translating intention into action – Piloting the NIHR Patient Engagement in Clinical Development Service Accessed March 2022.