Public and Patients
ICODA was set up to support research that led to tangible health impact, and to benefit patients and the public by improving the understanding of COVID-19 and by speeding up identification of ways to prevent and treat the disease.
For a project as ambitious as ICODA, with health data at its heart, building public trust was essential. We recognised that the pandemic itself represented a challenge – urgent medical treatment could result in data collection without appropriate engagement.
We worked with public and patient experts to identify the best way of embedding the community, public and patient voice in our decision-making processes and projects. As a first step in developing our community engagement and patient and public involvement strategy, we conducted a survey in October 2020, followed by a workshop with representatives from diverse geographies in November 2020 – find out more in our workshop report here.
Public and patient involvement and engagement was also one of the key principles underpinning the Grand Challenges ICODA pilot projects funding call. Applicants had to demonstrate how public and patient engagement would be woven into their study design and governance. For applicants who progressed to second stage review, two Stakeholder Engagement Workshops were convened to support research teams on:
- engagement and involvement of patients and the wider public in data science research
- researcher engagement with policy makers and influencers to maximise impact studies;
Our successful grantees were asked to report on engagement activities in each of their quarterly progress reports and we also convened the public and patient community and stakeholders in January 2022, half way through the project funding period, for our teams to share their activities, challenges and lessons learned.
“A diverse and inclusive public involvement community is vital if research is relevant to population needs and provides better health outcomes for all. Working effectively with the public and patients and advocates from a wide range of different cultural contexts is essential to the work of ICODA and key to achieving their aims of delivering world-leading research that is transparent and demonstrates trustworthiness.”
Bella Starling, BSc, Dip, PhD
Director of VOCAL, Wellcome Engagement Fellow