Public and Patients
ICODA has been set up to support research that will lead to tangible health impact, and to benefit patients and the public by improving the understanding of COVID-19 and 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 is essential. We are therefore committed to demonstrating trustworthiness. As part of this, we are determined to embed meaningful community engagement and public and patient involvement across all our activities.
We also recognise that the pandemic itself represents a challenge – urgent medical treatment can result in data collection without appropriate engagement. So, we will always seek advice to help set up practices to build confidence in how health data is collected and used in the long term.
We are working with public and patient experts to identify the best way of embedding the community, public and patient voice in our decision-making processes. 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 the report here. From this, we have developed a draft Community Engagement and Patient and Public Involvement strategy, which is set out below:
- Embed public and patient voices in our governance
- We will establish a dedicated Public and Patient Voices Expert Group, with lay representatives from around the world to provide advice from the patient perspective.
- We will include representation from this Group in other parts of ICODA’s governance, and the Chair will be a member of the Ethics Advisory Council.
- Work in partnership with expert groups in Community Engagement and Patient and Public Involvement
- We will invite expert groups to become Strategic Partners of ICODA, to provide ongoing input and guidance as we develop our strategy. We will work with this network of partners to share ideas and best practice, and to broaden our engagement and involvement work by connecting with their lay and patient networks.
- Ensure transparency throughout our work, emphasising inclusivity and accessibility, to continually build public trust
- We will emphasise inclusivity and accessibility throughout all our communications, with a particular focus on explaining how data is used and how it is kept secure.
- Focus on involvement and engagement for Driver Projects (exemplar research studies)
- Driver Projects are exemplar studies where ICODA is working in close partnership with data contributors to bring together datasets to address specific research questions. These projects provide an opportunity to ensure Community Engagement and Public and Patient Involvement is embedded from the outset.
“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
As we move forward with our strategy, we are keen to ensure that it is fit for purpose and reflects the perspective of different communities. We therefore invite comments and feedback and also are keen to hear from individuals and organisations that are interested in keeping in touch or getting involved in our work going forward. Please contact us using this form:
Find out how data is used
We are committed to transparency across all our activities. We provide information about all research projects that have been approved to take place in the ICODA Workbench, including information about the researchers involved. We also provide information about applications that have not been allowed.
We will also give updates on any findings and publications from research undertaken using the ICODA Workbench.
We know how important it is to recognise the contribution of trial participants, patients and the public who allow data about them to be used in research. We encourage researchers to acknowledge this contribution through our Attribution policy.