Public involvement is vital in health research as lived experience can drive forward change and improvement in our healthcare and services. Knowledge of research processes and how data is collected, used and protected is the foundation for public understanding and essential to build trust in data use.
This course gives an overview of the journey of data and explains some of the complex and at times confusing processes involved and answers some of the Why? How? What? Where? questions you may have.
Anyone who is curious about data and wants to learn more can do this course it cannot answer every question but will give you lots of information to help you understand about data and research and where the public fit into the process. ”
Jan Speechley, Member of the DATAMIND Super Research Advisory Group
What is Healthcare Data?
Healthcare data is information about people’s health and medical care. It includes things like their medical records, test results, treatments, and even things like how often they see the doctor. This data helps doctors make good decisions about how to take care of patients, and it’s also used for research to find better ways to treat illnesses. It’s important to keep this data safe and private because it’s personal and sensitive.
What will you learn?
You will learn about how NHS healthcare data is used and stored, as well as your rights as a patient and citizen. The course will delve into how health data is used by researchers to help improve scientific understanding about health conditions and treatments. This will be presented in terms of the possible risks and benefits involved.
Who is This For?
This is for everyone who has used NHS services and is curious about their health data. If you’ve gotten help from NHS for mental health, you might find it even more interesting, because a lot of the examples are about mental health.
- Introduction and Welcome
- Learning objectives
- What is ‘data’?
- Where is data stored?
- What is ‘personal data’?
- What is ‘special category’ personal data?
- What is in my NHS record?
- What is health data?
- How is your data processed
- Your personal data rights
- How the NHS uses sensitive data
- When things go wrong
- Health data and research
- Health data improves lives
- Protecting access to data in research
- Trusted Research Environments
- What data do researchers access?
- Data linkages
- How data science works
- Who does data science?
- Lived experience involvement
- Getting involved
- In Summary
- Case Study Examples: Exploring how healthcare data assists real-life situations
You’ll be learning from:
- Jan Speechley: A key member of the Super Research Advisory Group at DATAMIND, offering insights from a patient and public perspective.
- Dr. Dan Robotham (McPin): An expert in data literacy, who will help you navigate the complexities of healthcare data.
- Prof. Ann John: A Co-Director at DATAMIND, sharing case study examples to demonstrate how healthcare data contributes to improving people’s lives.
When Can You Start?
Feel free to begin whenever it suits you. We’ve designed it to fit into your schedule.
Begin Your Learning
Simply press play on the video below to start your learning. You’ll have the flexibility to pause, rewind, and navigate through the content as desired.
Thank you for participating in the data literacy short course. We value your opinion and would like to hear about your experience. Please take a few moments to share your thoughts by answering these short questions. Your feedback is essential in helping us enhance the course and create a better learning experience for future participants.