NHS data is crucial for healthcare professionals and researchers alike, but its use is complex. It involves a high level of technical and legal expertise as well as contextual knowledge (such as understanding different NHS data storage systems that are used to process patient data). This is a knowledge barrier for the public, making it difficult for patients to make informed choices about their data, leading to fear and suspicion.
This is particularly true for mental health patients which receives special attention from DATAMIND, the UK’s Hub for Mental Health Informatics Research Development and this project’s catalyst. As a result, the team developed a course to help people understand their rights regarding NHS data and how it is used, as well as learning how to make informed choices about how these data is used for research purposes. It highlights the fact that NHS data is about patients, and patients are entitled to access their data and know how it is being used.
With the support of DATAMIND, the team were able to create a short, self-paced online course on data literacy, in collaboration with the McPin Foundation (a charity that transforms mental health research by involving people with relevant personal experience) and various Patient and Public Involvement and Engagement groups. Its aim is to enhance people's understanding of NHS data utilisation, including insights from those who have experienced NHS mental health services in both primary and secondary care settings, where participants will learn how NHS healthcare data is employed and secured, along with their rights as patients and citizens.
Designed for anyone who has engaged with NHS services and holds an interest in their health data, the course dives into how researchers utilise health data to advance knowledge about medical conditions and treatments. It becomes even more intriguing for those who have received NHS mental health support, given its emphasis on relevant examples.
As a result of this course, the hope is to improve data literacy in people who are interested in understanding how NHS data works, and encourage people to become curious and explore this subject in more detail with the ultimate aim from to empower people to make informed decisions about their NHS data.
The project's sustainability is ensured by its design, as the course remains static with no need for further updates, changes, or ongoing support, making it freely accessible to all. However, the course is also open to future growth. It could be expanded to delve deeper into modules covering security, ethics, and research methods. The course can also be used to host live workshops, incorporate real-life case studies, feature guest speakers, introduce course certification, and establish a robust feedback system for continuous improvement. DATAMIND is actively considering these possibilities for future enhancements.