Together with members of our PPIE Group, we identified a significant lack of opportunities for patient representatives to learn about health data issues and the nuances of research projects that use health data. This was backed up by a joint survey about patient data from DATA-CAN, the National Cancer Research Institute (NCRI), use MY data and Health Data Research UK (HDRUK). The survey established people’s experiences of data-learning and whether patient advocates saw a need for more. 90 per cent of respondents said they would like more advice or guidance to help with their health data projects.
DATA-CAN has therefore developed a programme of learning resources for patients and the public wishing to learn more about health data and its uses for analytics and research. Many health education materials are aimed at professionals – this programme is aimed directly at patients, carers and advocates with an interest in patient data. Although its main focus is on cancer data, it has been designed to be used for wider data education so that it can be used by other health data research hubs as well as members of the public.
Initially, the education programme comprised of eight modules and was subsequently extended to sixteen separate topics, from collection to usage. Participants can ‘pick and choose’ according to their needs and interests. We also use existing materials, including patient data animations from Understanding Patient Data, and materials produced by use MY data and the NCRI. We have recorded a number of sessions to create training videos.
You are attempting a variety of different ways of engaging us. A strong starting point is your belief that additional education will help to strengthen our resolve to contribute to DATA-CAN and I thoroughly support that belief.
DATA-CAN PPIE member
Our intention is to continue to develop education on a wide range of topics reflecting the different levels of expertise and experience, and exploring various delivery mechanisms and forums. This will all be co-developed with PPIE representatives and health data researchers.
I did not understand who was allowed to share my personal health data, who with, for what purpose and whether or not I could be identified from the data. As a result of using this education material, I now have a much better understanding and as a result feel much more reassured.
DATA-CAN PPIE member
Topics covered in our learning sessions so far include:
- Data – from consultation to dataset; what your data looks like
- Use of cancer data during the COVID-19 pandemic
- Data and inequality; what data exists, what can we measure and what does it show
- Rare and less common cancers
- Mental health data
- Legal bases for using data; including the GPRD and Common Law
- Data access for research; the process, timelines and frustrations
- Commercial access to data; how does this happen, and who benefits?
- International data; what data is available outside the UK, and is it similar
- Children and young peoples’ data
- Clinical trials; from start to finish
- NHS and the private Sector; where does the NHS stop, and private start
- The HDRUK Innovation Gateway; an overview
- Data stories in the media; some examples of media representation of data stories
- Primary care data, research and industry (CPRD).
For further information, email info@data-can.org.uk