Public and Patients

We are committed to transparency and developing a trustworthy approach.

4 friends walk down the street each wearing PPE masks

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 trust is essential. We are therefore committed to demonstrating trustworthiness.  As part of this we want to embed meaningful public and patient involvement across all our activities.

We will work with the community to learn from, develop and share best practice.  We are currently gathering input from a range of representatives to help develop our approach.  One of the challenges  is to ensure effective engagement and involvement in a wide range of different cultural contexts.

We also recognise that the pandemic itself also represents a challenge – urgent medical treatment can result in data collection without appropriate engagement.  So, we will seek advice to help set up practices to build confidence in how health data is collected and used in the long term.

 

How we will include public and patients in our governance

We are working with public and patient experts to identify the best way of including public and patient representatives in our decision-making processes.  We are currently setting up a Public and Patient Engagement Expert Group, to provide regular advice, for example to inform the development of our Driver Projects.  If you have experience of international involvement, including working with public and patient networks across the globe, please do get in touch.

We are also drawing on Health Data Research UK’s Public Advisory Board and ICODA’s Patient and Public Involvement and Engagement Group for advice.

 

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 which will be published here soon.

  • “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 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

    Co-Director of Public Programmes / Wellcome Trust Engagement Fellow

Get involved

To help ensure our work has the trust and confidence of patients and public globally, we want to work with you to ensure this happens every step of the way.

There will be a number of different opportunities, activities and ways to get involved. To find out more please contact us.