Understanding Health Data Access

Complex rules govern how health and care data can be shared for research, innovation, healthcare improvement and other uses beyond individual patient care. Making sense of the permission process and legal requirements can prove daunting, both for new data applicants and for any patients and the public interested in understanding how the system works in practice.

The Understanding Health Data Access (UHDA) project is a suite of short films and written resources designed to improve accessible, introductory information to these rules and processes, providing:

  • 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 introduces some of the key legal requirements for data sharing in England and Wales. It applies to all applications regardless of who the data custodian is.

UHDA resources

All applications for health data must demonstrate they will use data fairly and legally, in a way that both protects privacy and benefits patients and the public. Being clear about how your project meets these requirements is key to a successful application.

Here you will find a number of resources to support you as you prepare to make an application.

An Introduction to Developing Good Data Applications
A good application will explain exactly and in detail which data you need, why you need it, how it will be used and by whom. Most importantly, you need to show how it will minimise the impact on patient privacy and explain the public benefit you intend to achieve. This introductory film guides you through these elements.

 

The Duty of Confidentiality
This animated film explains in more detail some of the key areas of data-sharing legislation that were referenced in our introductory film. It has a particular focus on the Duty of Confidentiality and  how it applies to health data applications.

 

Planning a Health Data Application: Questions and Information Sources
In this downloadable guide, you will find links to additional guidance and information across the research and data sharing community that you may find helpful in designing your data project.

Sharing the UHDA resources
We are happy for visitors to download, save, share, copy and distribute content relating to the Understanding Health Data Access project for non-commercial purposes free of charge as long as it is appropriately attributed to HQIP with a link to this webpage.

Information for patients and the public

When we talked with patient, public and charity representatives during the development of the UHDA project, they told us they wanted to know more about:

  • benefits to the public of sharing health data for purposes beyond an individual’s care
  • the difference between confidentiality and data protection
  • giving consent for health data to be used
  • how secure their heath data is once it has been shared
  • how transparent studies need to be about how and what data is being used
  • the time delays between when the data is from to the information in the study.

These needs are significantly wider than the scope of our work on UHDA and our project builds on, and does not duplicate, the wealth of resources that exist about personal and health data, how it is used and how it is shared. That’s why we’re recommending the following resources for individuals who would like to find out more:

How patient data is used and why, what the safeguards are, and how decisions are made. Understanding Patient Data aims to make uses of patient data more visible, understandable and trustworthy, for patients, the public and health professionals. They work with patient groups, charities, NHS organisations and policymakers to bring transparency, accountability and public involvement to the way patient data is used.
The public benefit of sharing health data Data Saves Lives is a multi-stakeholder initiative with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.
The difference between data protection and data confidentiality Data protection is about ensuring that people’s data is used fairly and responsibly and applies to all information collected for uses beyond individual, family or household purposes. It is set out in the Data Protection Act 2018 and the UK General Data Protection Regulations (UK GDPR).

The Information Commissioners Office (ICO) is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals. The ICO’s Your Data Matters campaign includes resources about your personal data rights and links to further reading.

Patient information is generally held under legal and ethical obligations of confidentiality. The NHS Code of Practice is a guide to required practice for those who work within or under contract to NHS organisations concerning confidentiality and patients’ consent to the use of their health records.

National Data Opt Out You can choose to stop your confidential patient information being used for research and planning. More information about this is available from Your NHS Data Matters.
Consent NHSX has produced guidance on consent and confidential patient information covering what consent means in relation to using and sharing confidential patient information.
Security NHS Digital – Data security and information governance provides guidance on protecting data and handling information securely and is designed to help health and care organisations meet the standards required to handle care information.
How data is shared in primary care (general practice) settings All patients registered with a GP practice have a detailed GP record managed by their GP practice. This includes information about your NHS care, including your medication, allergies, vaccinations, previous illnesses and test results, hospital discharge summaries, appointment letters and referral letters.
Understanding the NHS This animation from The Kings Fund is a whistle-stop tour of how the NHS works.
What is the difference between direct and indirect care? Section 1.4 of the NHS Digital’s national data opt-out operational policy guidance document explains:

  • “individual care”, often referred to as ‘direct care’ where legally the sharing of data is based on implied consent, i.e. where the patient knows or would reasonably expect their data to be shared for their care and treatment.
  • “purposes beyond individual care” is used to refer to all other uses of data outside an individual’s care and treatment. This is sometimes also referred to as “secondary uses”, “indirect care” or “other purposes”.

Some of our patient, public and charity representatives wanted additional information and reassurances in areas such as how commercial companies use NHS health data, and how the National Data Opt-Out initiative will work. As a result, we’ve undertaken to relay details of this information gap to our partner organisations in government and in the health data community who may be better positioned to respond.

Information about the UHDA project

The UHDA project was funded by the Health Foundation and delivered by a UHDA Project Team at HQIP comprising:

  • project lead: Dr Yvonne Silove
  • patient and public involvement lead: Kim Rezel
  • communications lead: Eva Duffy
  • IG and data protection experts Dr Sasha Hewitt and Desislava Staykovska
  • National Joint Registry‘s deputy director of operations and member of HQIP’s Data Access Request Group: Chris Boulton

HQIP was supported on the project by creative design agency, Brickwall.

In delivering the project, we are indebted to the individuals and organisations who contributed their time, insight and knowledge with great generosity.  Our Expert Advisory Group included:

  • patient, public and charity representatives who helped keep the patient perspective in focus
  • data applicants who tested our resources and gave us valuable feedback
  • experts in the fields of healthcare information governance and data access
  • representatives of organisations with shared goals to enhance the safe and legal sharing of data access to benefit health services
  • representatives of a range of national data custodian organisations.

Contact

For further information, please email Dr Yvonne Silove.