It is vital to the success of our work that patients and members of the public are involved from the outset, inform discussions and influence decision making. As the “Data and Connectivity” National Core Study 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.
We are working with patients and members of the public in a number of different ways to ensure we are truly embedding the patient and public voice in a meaningful way.
How will patients and the public be involved?
Members of the HDR UK Public Advisory Board will have the crucial role in providing strategic advice to this programme of work. Additionally, lay members will also be 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.
We will 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.
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
This is only a snapshot – much more patient and public involvement and engagement is planned for “Data and Connectivity” 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.