Understanding Health Data Access – a challenge and a half!
17 March 2021
Dr. Yvonne Silove – lead for Healthcare Quality Improvement Partnership’s Understanding Health Data Access shares the background to the project.
It is a universal truth that the more complicated a process is, the harder it can be to know where to start, and the greater the risk of heading off in the wrong direction from the outset.
This most certainly applies to understanding the rules and requirements for using health and care data for service improvement, research and innovation. Data applicants tend to be highly skilled and creative in their subject matter, and can be visionary in designing data projects to answer important questions to the benefit of patients and the public. But many, particularly early in their careers, are not yet fluent in the information governance ‘speak’, legal requirements and range of permissions they may need in order to achieve access to the data they require.
HQIP Understanding Health Data Access
Communicating complex information
We all find ourselves at times having to communicate complex sets of information to an audience new to trying to make sense of it all. Over the years I have learned the hard way that it can be all too easy to get stuck into the details and assume you have taken your audience with you, only to be met with a baffled look and a shrug of the shoulders at the end of a long and intricate explanation. So now I focus hard on getting everyone grounded in key principles – using detail more to paint a mental picture than to impart total proficiency from the outset – so that any detail functions to allow new principles to be understood, absorbed and retained:
‘Imagine you are a ship’s captain – what are the essential beacons you need to set your course by? Why are they there, what are they for, and what do you need to know to pass through safely?’
In my current role at Healthcare Quality Improvement Partnership (HQIP) this happens most frequently when reviewing applications to access the health data that we are custodians for. An application might come to our data access committee, fall short on a number of issues, and have clarifications requested by us. But what comes back on the updated application makes even less sense to us. So we initiate a phone call. Over the years, I learned the almost universal benefit of starting the call by offering to summarise to the applicant the key features of what the committee is looking for in the application as a whole.
After a while I began to wonder if recording this introductory ‘elevator pitch’ explanation might not be useful to a much wider range of audiences – after all what I was saying was by no means unique to HQIP. At the time, back in 2019, I was helping The Health Foundation to support award holders to use national clinical audit and registry data for research and innovation. The award holders’ biggest source of risk was from problems gaining IG approvals. We started talking with The Health Foundation about what could be done to better support data applicants, and Understanding Health Data Access (UHDA) was born.
UHDA comprises two films:
and an ‘at-a-glance’ static summary:
A collaborative process
Producing all three of these has been a deeply collaborative process. It had to be, if we were to achieve our ambition to produce resources as applicable to as many different datatset types or custodians as possible, while resonating with the experiences and need across the health and care system. We are grateful to HDR UK – both the Alliance and the Innovation Gateway teams – for their belief and support of the project from the outset.
Understanding Health Data Access – helpful resources on the Gateway
In addition, the Health Research Authority, NHSX, NHS Digital, Public Health England, Medical Research Council, National Institute for Health Research, the office of the National Data Guardian, Clinical Practice Research Datalink (CRPD), other groups and individual data applicants themselves, worked alongside us to define the most useful content and helped us make sure that in stripping the complexity back to first principles, the validity and accuracy were not sacrificed.
We are also grateful to Brickwall, our creative design partners who approached the topic with great skill and enthusiasm despite its inherently dry nature, and showed endless patience as we worked together to hone each word and image so as to carry as much meaning as possible.
While data applicants are our primary audience, we intended from the outset that some patients and members of the public might also benefit, particularly from the introductory film. This audience profile would be specifically people who, having been told that their data was being shared legally and safely, wanted to understand how this happens in practice. We gained invaluable insights and support from Understanding Patient Data, and also consulted with patient charities, patients and members of the public. Our experiences and learning from this are described in our guest blog for UPD , authored by HQIP and UHDA patient and public involvement lead, Kim Rezel.
As I write this, I am thinking back to how much and how quickly things have changed since we first started developing the project two years ago. HDR UK has gone from an idea, to an established organisation, to a powerful alliance focused on enabling innovation and research, engaging patients and the public and helping us all to realise the potential from health data. The Gateway is a reality – and data applicants have access to information and tools to support them locate datasets and understand their utility as never before. We have experienced the first pandemic of a generation, and health data has powered the decisions that have affected every one of our lives on a daily basis. NHSX’s draft Health and Social Care Data Strategy will be published this month and will set the ambition and a new trajectory for health data in this country in the coming years.
Understanding how health data can and should be used is everyone’s business. All of us have a stake in this as we each generate health data simply by being born, being vaccinated, being ill and being treated. UHDA so far has just focused primarily on one audience – the data applicants – and just at the most introductory level.
But there is so much more to explain and so many other groups owed an explanation, and at times of rapid change, clarity is even more important.
Understanding brings empowerment – to design projects well, use data wisely, and to protect patient privacy. We hope you enjoy the films and find them useful – and that you will share them with others who would benefit. Our ambition is to grow this series. There is no shortage of complexity that could benefit from beacons to navigate by.
Yvonne is Associate Director at HQIP and a member of HQIP’s Data Access Review Group.
The Healthcare Quality Improvement Partnership (HQIP)
The Healthcare Quality Improvement Partnership (HQIP) commissions and supports national and local programmes of quality improvement. This includes the UK’s largest programme of national clinical audit on behalf of NHS England and Improvement and the Welsh Government.
Understanding Health Data Access is funded by The Health Foundation. The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK.
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