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PEDRI partners are committed to exemplifying best practice in public involvement and engagement in data-driven research and statistics. As organisations in a privileged position to be working with people’s data, we have a duty to listen to and understand what matters most to the public and act on their needs, interests, and concerns by involving them in decisions about data projects. We are dedicated to embedding public voices at the forefront of our work to maximise the impact of data research, demonstrate trustworthiness and accountability, and build public confidence. As partner organisations we commit to working collaboratively and sharing learnings across the sector to enable meaningful public involvement and engagement across the data research and statistics ecosystem.
“I definitely want my personal data to be used in studies that generate public benefit, but I need to know that it will be handled safely and used to good effect. Everyone should be able to find out how their data is used, for what purpose, and what the safeguards are, but this information is often hard to find. Solving this problem must become a top priority for those who look after and analyse our data.”
The subject of data is a daily news headline. Through the pandemic, we had a clear sign that the use of data has quickly become a part of our national conversations and has an increasingly vital role to play in research. However, to unlock the full potential of the access and use of data for research and statistics, the public need to be actively and consistently heard, engaged and involved in decisions around how their data is used.
To address this challenge the Public Engagement in Data Research Initiative (PEDRI) is a new sector-wide partnership bringing together a range of organisations who work with data, whether that’s health data, administrative data or statistical data. The PEDRI members recognise the need for collective action to embed meaningful public involvement and engagement across the data ecosystem. Our goal is to collaborate on best practice of bringing the views of the public to policymakers and data holders and to ensure data is being managed and used in ways that builds trust and confidence in the safe, appropriate, and meaningful use of their data in research.
PEDRI members from across the UK data ecosystem are excited to come together for the very first time as partners to demonstrate our commitment to bringing about real changes that will push forward best practice standards. Yet, we can only succeed in our mission if all research organisations, funders and regulators unite with us in our collective action to proactively work with and for the public.
“Public and patient engagement and involvement is a cornerstone of health data science. Simply put, it makes research better. It enhances the transparency and accountability of research, and the opportunity to deliver impact to address societal needs locally, nationally and globally. I am delighted that HDR UK is working in partnership to learn how we can maximise the benefits of public and patient at scale.”
“Across the ADR UK programme, we know we need to go above and beyond our legal responsibilities if we are to maintain our social contract with the public to use administrative data for research. That is why we see it as our responsibility not just to embed meaningful public engagement into the research and data linkage programmes we fund, but to actively seek and promote best practice in how to do this. The PEDRI initiative is an important step forward in strengthening this work, providing a platform to support and share best practice in public engagement across the field of data research.”
“In these challenging times, it’s more important than ever to ensure that the public – our most important stakeholder - is happy for us to continue collecting data from across society and will benefit from the statistics we create. That is why it’s imperative we seek out the views of the public and involve them in decisions about their data. We are stronger together and this new partnership will improve how everyone in the data space engages with the public. This, in turn, will increase the quality of the data available to us to address a wide range of challenges, from the rising cost of living to regional deprivation and inequality.”
