It is vital to the success of our work that patients and members of the public have been involved from the outset, inform discussions and influence decision making. As the “Data and Connectivity” National Core Study (NCS) is a part of the UK’s research response to the COVID-19 pandemic, it is therefore imperative that patient and public involvement and engagement is a core theme that runs throughout its work.
Patients tell us how COVID-19 has affected them and why research using health data is important
The patient voice is at the heart of everything we do. We spoke to patients who shared their personal experiences of COVID-19 and why they believe research using health data is important.
How are patients and the public involved?
Members of the HDR UK Public Advisory Board have had a crucial role in providing strategic advice to this programme of work. Additionally, lay members have a significant voice in our planning processes, delivery groups and work with us to push forward our patient and public involvement and engagement work in this area.
The Data and Connectivity Delivery Group reports to the leads of Data and Connectivity and then to the NCS Oversight Committee, who ensure the programme of work meets the needs and is delivered across the UK. Public and patient engagement and involvement is crucially important to monitor study developments and ensure that trustworthiness and transparency is demonstrated and to ensure that benefit to the public is key to all actions.
Currently there are two lay members who sit on the Independent Advisory Group and one lay member who sit on the Delivery Group. Additionally, we created a wider Advisory Group of four lay members that works alongside the Delivery Group. The objectives of the lay members on the Delivery Group and the Advisory Group are to raise any concerns and help shape the development and delivery of the programme.
Working together, we want to ensure the patient and public voice influences and shapes our work in “Data and Connectivity” through:
- Informing key decision making
- Planning and measuring patient and public involvement and engagement impact
- Sharing views on challenging and complex issues that may affect public trust
- Ensuring transparency of the entire process of the study, from data access to insights and observations, all the way through to outputs of the work
- Helping write content to ensure it is engaging, accessible, includes key messages of interest to the public and ultimately helps us communicate why this is such an important piece of work
We also work with a wider group of patients and the public, including our COVID-19 Patient and Public Group, patient and public groups based in the Health Data Research Hubs, our newly established network – HDR UK Voices and key patient and public partner networks too.
A key example has been a work in enabling COVID-19 Vaccine Research. As part of this work, over 800 patients, carers, members of the public and practitioners participated in a two week-long consultation to prioritise health data research questions on COVID-19 vaccines. This insight has been invaluable in guiding the work of the National Core Studies.
We have continued public involvement in all of our work on COVID-19 vaccine research. In November 2021 we invited 18 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 research. Please read this case study to read about the process of involving patients and the public and the impact of this work.
This is only a snapshot – much more patient and public involvement and engagement will be occurring as the programme progresses.
If you’d like to find out more information, get in touch with the team at firstname.lastname@example.org.
Interested in getting involved?
To help ensure the work across the Data and Connectivity programme has the trust and confidence of patients, public and practitioners, we want to work with you to ensure this happens every step of the way.
There will be a number of different opportunities, so you will have a range of options when it comes to the type of activities and how much you choose to get involved.
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...
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...
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.