Understanding Health Data Access

Health and social care organisations share personal health information about their patients to coordinate and deliver the best possible service for each person. This sharing of patient data for ‘primary use’ is growing as patients live longer and need more integrated care.

But patient data can also be shared for other reasons, for example for research, and to plan and improve the quality of care provided to the population overall (secondary uses).

Opportunities to unlock this secondary value in health data are growing. But there is still little information available on the laws and regulations by which our health data is shared. This means that:

  • Patients and the public can struggle to understand how the sharing of health data is regulated
  • People who apply to use health data can struggle to know how best to plan their projects and seek the approvals they will need

The Understanding Health Data Access project will develop, publish and share a range of short introductory videos and resources to help both groups onto a firmer footing in this tricky, technical area.

The project will focus exclusively on how data is shared for secondary uses.

Project aims

For data applicants, patients and public, the project aims to:

  • Improve understanding about how and why health data is shared
  • Explain and demystify the rules under which the data sharing is permitted
  • Show how individuals and organisations make sure the rules are followed

Additionally, for data applicants, the project aims to:

  • Support data applicants to design their projects mindful of the legal and information governance aspects of health data access
  • Improve the quality and effectiveness of their applications, and thereby
  • Help to improve the efficiency of data access processes in England and Wales

Our overarching objective is to:

  • Help enhance the secondary use of health data to the benefit of patients and the public.
What will we produce?

We will produce a range of high level, accessible, and easy to understand information, presented using a range of formats. This could include:

  • Animations
  • Infographics
  • Gifs
  • Filmed content

The content will:

  • Be co-designed with patients and the public, and with data applicants, and designed to meet their needs and interests
  • Be produced in partnership with relevant national organisations involved in regulating, sharing and consuming health data
  • Be available freely for re-use and in particular for each organisation to fit with their existing guidance and promote on their own webpages and via their own communication channels
  • Be developed in line with relevant initiatives from Health Data Research UK (HDRUK) and others
  • Meet government standards for accessible design

The project will run for a year, starting from March 2020. It is supported by the Health Foundation, committed to bringing about better health and health care for people in the UK. The project will build on, not duplicate, the wealth of resources that already exist such as Understanding Patient Data, Data Saves Lives and Your Data Matters.

How will we work?

In response to the Covid-19 pandemic, the project has been designed to run virtually throughout, without planned face to face working. If in-person work becomes desirable (such as for the production of filmed content) this will only take place if within government guidelines at that point in time.

Who will be involved?

The project is being delivered by an UHDA Project Team at HQIP comprising the project lead, Dr. Yvonne Silove, and the project and communications manager, Eva Duffy, with additional support from HQIP’s Patient and Public Involvement Lead, Data Protection Officer and other team members. The team meets monthly and reports to HQIP’s Audit Data for Improvement Executive.

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

In addition, HQIP will recruit people with a broad range of personal and professional experience to influence and guide the project. This will be key to producing useful content. These individuals will be members of a virtual Expert Advisory Group and will include:

  • Representatives of the target audience groups, including patient and lay representation as well as a range of types of data applicants
  • Invited experts in the fields of healthcare information governance and data access
  • Representatives of organisations with shared goals to enhance data access such as HDRUK, Understanding Patient Data, and national research councils etc.
  • Representatives of national data providers such as NHS Digital and Public Health England

Members play an active role in scoping, development and user testing from start to finish. They will:

  • Participate in surveys, interviews and virtual workshops during the initial insight, strategic development, and production phases
  • Respond to emailed requests for ad hoc information and feedback
  • Help develop the key information and focus of each product
  • Review and comment on draft content
  • Review content design and format
  • Advise on how best to distribute and promote the information produced
  • Guide and quality assure the technical content
  • Provide constructive challenge
  • Adopt and promote the content produced

Time commitments for the various tasks and stages will be made clear as the project progresses. HQIP will prioritise breadth of expertise and flexibility in methods and timing of engagement requests in order to gain the maximum possible benefit from the Group.

Final sign off of the project content, taking into account all input from the Group, will rest with HQIP.

Honoraria will be offered for patient and lay participation, and a project-specific policy is under development.

Contact

For further information, please email [email protected].