The work of Data and Connectivity, and all the National Core Studies, is reliant on using the public’s data to answer important questions related to COVID-19 and to prepare the UK against future health threats.

It’s vital that representatives from patients and the public are meaningfully involved in shaping this work to make sure public data is used in a trustworthy and transparent way, and that patients get maximum data from research that uses their data.

Patients and the public are involved in:

  • Informing decision making by sharing their views on challenging and complex issues that may affect public trust
  • Planning how patients and the public can become involved in the National Core Studies and measuring the impact of this
  • Writing accessible content for the public to share key messages of interest and help make sure the work of the National Core Studies – from how data is accessed, to the results of research using public data – is transparent.

Patients and the public are represented across the Data and Connectivity programme:

  • Governance: To shape the delivery of the programme, ensure that trustworthiness and transparency is demonstrated in all aspects of its work  and make sure the public’s voice is heard in strategic decision making for the programme
  • Funding panels: To ensure that research funded by Data and Connectivity maximises benefit to patients and the public
  • Lay Advisory Group: To advise on the development of the programme and raise any concerns relevant to patients and the public.
  • HDR UK Voices: HDR UK’s newsletter for patients and members of the public, to communicate progress and outputs from Data and Connectivity

 

The impact of involving patients and the public

Enabling trustworthy access to vaccine data

Members of the public took part in a workshop to understand public perspectives in making regional, linked health data available for research use, to support vaccine safety research.

Read more

Keeping the public informed

Data and Connectivity work with representatives from the public to produce videos to keep patients and the public informed in its work.

Watch now

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. 

Sign up to HDR UK Voices