Brief
The Health Quality Improvement Partnership (HQIP) appointed Brickwall to help them deliver several resources as part of their Understanding Health Data Access project. We formed part of the team that set out to deliver against two main aims:
- To inform health and care professionals, researchers, healthcare regulators and industry about the legal requirements and principles of data access, to help them access health and care data for uses beyond direct care.
- To improve the understanding of patients and the public about the legal requirements governing access to health data and how the system works to meet these requirements.
Approach
We underwent a significant discovery phase with the UHDA team and a wider working group made up of various stakeholders involved in the data healthcare landscape, including data custodians, information governance organisations, patient representative groups, healthcare professionals and researchers.
This phase helped us to understand many of the issues surrounding the subject and find a number of sweet spots that meant we could satisfy recurring themes that came from audience representatives, whilst also being sure that we were also passing on new information regarding the laws and processes surrounding proper access to healthcare data.
By the end of the discovery phase, we had a set of key messages and a proposed content strategy - the production of two explainer films, plus a design-led reference asset, all delivered through a peer-led network of healthcare data professionals.
Outcomes
The resources provided accessible, introductory information supporting:
- an overview of how to design projects which both protect patient privacy and meet legal requirements
- an understanding of how to construct data applications clearly, thereby improving the chances of success and reducing the risk of avoidable delays.
The information in the resources also introduced some of the key legal requirements for data sharing in England and Wales. It applied to all applications regardless of who the data custodian was.
The rollout was also successful, with the resources being shared across several partners such as NHSX, HDRUK, Understanding Patient Data, National Data Guardian, NHS Digital and more.
We also received several pieces of anecdotal feedback from viewers:
‘Both videos are really useful, I can see these helping explain these concepts to everyone’s benefit’ Data Protection Officer (DPO) large teaching hospital trust
‘This is very useful to share with our R&I colleagues and the regional research teams.’ DPO acute trust
‘Thank you- this is an amazing resource! The videos are very well done.’ Researcher, Primary Care Health Sciences, University of Oxford
'... these resources will be hugely useful. I have recently been asked by a colleague about background reading in this area and it's very hard to find a good source, so there is definitely a gap in the market for an engaging resource. Good luck getting it finalised and I’m looking forward to seeing the final product!' Director, NHS Digital
The first video, the introduction, can be viewed above. The second film, on the Duty of Confidentiality, can be watched below: