News and opinion from public involvement and engagement
We work with members of the public and people using the health and care system. Our news, case studies and opinion pieces give some examples of how patients and the public have been involved in our work, and the positive impacts they have had.
How do HDR UK decide who wins the Patient and Public Involvement and Engagement (PPIE) Award?
Jan Speechley is a member of our Public Advisory Board and it has been a pleasure to have her chairing our Patient and Public Involvement and Engagement Award Panel meetings. In this blog, she...
Science Festivals: Reaching out to new audiences about health data
It was an unusually hot September weekend. Many of you will have spent your time relaxing in 30°C sunshine at the beach or your local park. Our hard-working HDR UK team? We were talking about all...
Antony: Making my voice heard to support the millions of people living with chronic pain
Why do I do this? Some of it's about the pain and raising pain awareness, but it’s also about making a difference. The key is to keep asking questions, be curious, and be kind.
Ed: Better to light a candle than curse the darkness
In Northern Ireland, I had often felt like a lone voice calling for wider access to patient data by accredited researchers. Now, I'm a member of a bigger UK organisation which would have a major...
Clara: Breaking the silence for neurodiverse voices
By sharing our unique experiences, we can help researchers and patients learn from each other. Open the door and see how it is. Give one step and you can always go back out.
Munisa: Be ready to have your say, never underestimate your value
After personal experience with a rare condition, I know how it feels to be bombarded with jargon and misleading articles. Getting involved allows me to have a say in all parts of the research process.
Lynn Laidlaw: “I want to have an honest conversation about the strengths, and limitations, of data. And you can too.”
We hear from Lynn Laidlaw, one of HDR UK’s public and patient advisors who will be speaking at HDR UK’s Scientific Conference in December, about what public involvement means to her and how we...
Being part of the Public Advisory Board has been such a unique experience
Many of you are probably reading this because you are interested in joining the Public Advisory Board. To which I say, express your interest today!
Public and Patient Involvement and Engagement (PPIE) Impact case study – BREATHE
From its inception and grant award in 2019, BREATHE, the Health Data Research Hub for Respiratory Health, has invested in Patient and Public Involvement and Engagement (PPIE). The contribution...
March Public Advisory Board meeting – planning ahead, and reflections on three months as a new member
The focus of the March Public Advisory Board (PAB) meeting was on the Board looking ahead and planning their strategy and activities for 2022-23 and beyond. Read this blog post by PAB member Alan...
The importance of engagement and involvement in health data research – reflections on the #AtoZHealthData campaign and HDR UK Voices
Engagement and involvement of patients and the public is key to all we do at HDR UK. We want to help everyone learn more about how their data can be used safely and securely to enable discoveries...
February Public Advisory Board meeting – Trusted Research Environments
The focus of the February Public Advisory Board (PAB) meeting was the activity the PAB aim to do around improving public involvement in Trusted Research Environments (TREs). Read this blog post by...
The A to Z of Health Data
Thank you to everyone who got involved in our A to Z campaign – we loved sharing the impacts with you. How did you do in the Wordle? You can retry some of our favourite words here and here. If...
The role of PPIE in enabling rapid and trustworthy access to regional health data to support COVID-19 vaccine research
We invited members of the public to participate in a workshop to understand public perspectives in making regional, linked health data available for research use, to support vaccine safety...
Population Research UK – how public contributors helped to shape research at its earliest stages
HDR UK sought to embed public and patient involvement in the entire journey of the design and dialogue phase of Population Research UK - through its design, to delivery, to impact and...
CO-CONNECT: A layperson’s perspective on using health data, building trust and the benefits of sharing
Karen Mooney, one of the Public and Patient Involvement team members for the CO-CONNECT project, guest-blogs on how getting closer to data has shifted her perspective.
How public contributors are influencing access to health data through the NHS Digital Trusted Research Environment Service for England
Involvement of patients and the public in data access processes, including access requests through Trusted Research Environments (TREs), is vital to ensuring the trust and support of those whose...
PIONEER’s public conscience – reflections on the first year of the Data Trust Committee
PIONEER, the Health Data Research Hub for Acute Care, reflects on the impact that their Data Trust Committee has had on access to health data for research.
How the HDR UK Public Advisory Board are driving involvement of patients and the public in data access processes
There’s nothing quite like throwing a small pebble into a still pond and watching the ripples spread out across the surface. Being a patient and public representative often feels like being a...
How North-West Londoners have helped shape how their health data should be accessed for research
Discover-NOW is the Health Data Research Hub for Real World Evidence and aims to revolutionise the way health data is used responsibly for research into treating and preventing disease. They...
DATA-CAN, the Health Data Research Hub for Cancer, speak to BMJ Opinion on how they work with patients and the public
Mark Lawler, Chris Carrigan, and colleagues describe how DATA-CAN’s co-created partnership has brought together patient representatives, healthcare professionals, and academic and industry...
Long COVID in Schools
How understanding the views of young people, families and doctors shaped research funded by Data and Connectivity National Core Study programme.
Data and Connectivity Rapid Funding Call: A guide to embedding patient and public involvement
We are pleased to publish a new document which provides guidelines to embed patient and public involvement (PPI) in a research funding call. The document provides advice and steps to ensuring that...
Why Public and Patient Engagement and Involvement is so important to health data research – Andrew Morris, Director HDR UK
In celebration of National Coproduction Week, we asked Andrew Morris for his thoughts on why Public and Patient Engagement and Involvement is so important to health data research.
Why PPIE is so important to health data research – SAIL Databank
In celebration of National Coproduction Week, we asked SAIL Databank for their thoughts on why Public and Patient Engagement and Involvement is vital for their research.
Why Public and Patient Engagement and Involvement is so important to health data research – Dr Sarah Bunney, Imperial College London
In celebration of National Coproduction Week, we asked Dr Sarah Bunney for her thoughts on why Public and Patient Engagement and Involvement is so important to health data research.
How public insights led by HDR UK informed vaccine research
In December 2020, the UK was at a crucial point in its response to the pandemic, with COVID-19 vaccine(s) entering the final stages of development and approval being rolled out across the four...
Why Public and Patient Engagement and Involvement is so important to health data research – Jillian, Rosanna and Chris, HDR UK lay members
Patient and public involvement and engagement (PPIE) is vital in the development of different areas of our work, including those where there is a level of uncertainty. Involving patients and...
Impact of patient and public involvement in the Data and Connectivity National Core Study
As the COVID-19 pandemic swept across the UK, the need to build a national health data capability to support priority COVID-19 research was obvious. Set up by the Government’s Chief Scientific...
Reflections on the COVID-19 National Core Study Data and Connectivity Delivery Group
What began as something so undesirable as a worldwide pandemic has become a catalyst for a coordinated, UK-wide approach to COVID-19 research, the National Core Studies Programme. It had become...
Get in touch
Public involvement and engagement is constantly shaping and influencing our work at HDR UK. If you have been involved in a piece of work with HDR UK and would like to talk to us about writing a case study or blog about your experiences, please email involvement[at]hdruk.ac.uk
