6 Mar 2025

The importance of data sharing from a patient perspective

At HQIP, we have long-since advocated the value of data and patient voice in delivering evidence-informed healthcare improvement. But don’t just take our word for it. Find out what patients think in this exclusive interview with two public members of HQIP’s Data Access Request Group (DARG), which considers requests to re-use the healthcare data commissioned by HQIP.

Healthcare data is viewed as a gift by those considering access to it”

As commissioner of the National Clinical Audit and Patient Outcome Programme (NCAPOP), HQIP is responsible for the largest clinical audit programme of its type in the UK. This work results in an enormous amount of invaluable data that is used by healthcare providers to deliver targeted improvements. However, we also have a duty to re-use this data to bring about even greater public benefit where relevant, and so we run a stringent process to consider access requests from service planning, research and other similar projects. Being responsible for such data is something we do not take lightly. As such, we ensure that that any access granted is only given after the greatest of scrutiny. Critically, this involves members of the public, who add a unique – and vital – perspective to the decision-making process.

Since the data collected – whether access for secondary use is granted or not – belongs to patients, we have invited two public members of DARG to share their thoughts on what it means to them to be involved in this important work…

Let’s start with healthcare improvement more generally. It can be difficult to see the changes that are taking place to bring about data-informed improvements on a day-to-day basis, but do you have any experiences of this?

WENDY: When I was in hospital recently, I presented with symptoms that were initially put down to anxiety by the clinicians I saw. But one doctor came and said that they’d read a journal paper recently about how females can experience my health condition in atypical ways, and how these symptoms can be under reported. With this research in mind, they observed me, and determined that my symptoms did relate to my health condition. They were then able to identify the care that I needed. This, to me, was a clear example of how data and research are having a direct impact on healthcare.

If done correctly, there is absolutely a case for using healthcare data more”

PHIL: Over my 40 years in healthcare, I have seen many examples of how good data collection and evaluation has made a difference – though it can require determination to move away from ‘we’ve always done it this way’. In dementia care, for example, we’ve seen the introduction of Dementia Care Coordinators, a very positive change which came about by evaluating the experiences of those living with dementia. More recently, I’ve personally been involved in conversations with my doctor about a change in the approach to my medication, based on the latest research. So, yes, I am able to see the impact that data is having on healthcare.

In your view, what are the pros and cons of using healthcare data to inform research and improve care?

PHIL: Firstly, we need to remind ourselves that healthcare data belongs to patients. Then, the truth is that collecting data comes at a cost. These two factors mean that there is a moral obligation to use data for the benefit of patients wherever possible. However, I agree that this needs to be done carefully and safely.

Data provides a sound rationale for why we offer care in the way we do”

WENDY: Using data to inform care is incredibly important and powerful, but it needs to be approached with care. If done correctly, there is absolutely a case for using healthcare data more. In my experience, healthcare data is viewed as a gift by those considering access to it. Though I would like to see more case studies being shared with the public, to help us all to understand the stringent processes that are followed before releasing data for research, and the positive impact it has on patient care.

Why did you want to become involved in HQIP’s DARG; why is it important to you?

WENDY: I joined HQIP’s Service User Network (SUN) first, and was then offered the opportunity to join a short project to determine the feasibility of involving patients in decisions around access to data. We spoke to experts in patient engagement as well as other groups actively working with patients, to find out what worked well for them for use as inspiration for HQIP. When they advertised for public members to join DARG, I thought “I would love to be involved in that”, as I have real passion for health and data, and wanted to bring a patient perspective to the access process. For me, a big factor in patients getting involved is that they want to make a difference.

PHIL: As a frontline healthcare worker, I was involved in using clinical audit in its early days, and could see that data needs to form the basis for every single decision made. I joined DARG because I believe that data provides a sound rationale for why we offer care in the way we do, but I wanted to make sure that it is used primarily for the benefit of patients.

There is a moral obligation to use data for the benefit of patients wherever possible”

What does your involvement in DARG include; what do you do in practice?

WENDY: Regular meetings are held to decide on the latest tranche of applications for data. We are sent information in advance, which we review independently, from the perspective of a patient. Then, we actively participate in the meetings – which are pragmatic, thorough and methodical – to make decisions about whether to release the data or not. We very much work together as a group, collaborating alongside experts from a range of fields, to shine a light on each request from every possible viewpoint. All in all, I am confident that the decisions taken are solid and well thought through.

What works well, and what are the benefits of being involved?

WENDY: We are able to offer a unique viewpoint, asking ‘what is the benefit to the patient?’, learning every time we look at a request. We feel that we have had an impact on the process as well as the resultant research and, ultimately, healthcare. It’s like looking through a window, and then being invited to a seat at the table.

PHIL: I agree. Our discussions enable a robust decision to be made. There is no deference to status and everyone is happy to challenge, and that is very important. Patient involvement within HQIP’s data access process isn’t tokenistic. Our voice is heard, and our view is respected and accepted.

Conversely, what are the challenges and learning points?

WENDY: In hindsight, it would have been beneficial to trial taking part in a meeting, before joining DARG. It can be a little daunting as a non-clinical person but I remind myself that, if I’m asking, others may also be thinking the same thing. It’s important not to doubt yourself, as it’s vital to have a patient perspective in the room to ensure that the healthcare data available delivers maximum benefit for patients.

At HQIP, we couldn’t agree more. We see it as part of our mission to ensure that the data we commission is not only protected, but also put to good use. We know that researchers face complex and sometimes time-consuming barriers to accessing NHS data. Our aim is to help remove those barriers while upholding our responsibilities of patient confidentiality, data security and public trust. That means enabling researchers to ask better questions, produce stronger evidence, and ultimately influence how care is planned and delivered.

Further information – links:

• The National Clinical Audit and Patient Outcome Programme (NCAPOP)
• HQIP’s data access request process and group (DARG)
• HQIP’s initial feasibility study to involve patients in data access requests:
  • Case study: Developing meaningful public involvement in HQIP’s Data Access Request Group (DARG)
  • A short video with the project team describing how they worked together to co-design outputs and processes
  • A poster illustrating the aims and outcomes
  • A short presentation that was used during the 2024 Clinical Audit Awareness Week Lunch and Learn session on Patient & Public Involvement (PPI)
• Video: Shared decision making – https://youtu.be/W4ybDpAiRNo (YouTube)
• Video: Patient advocacy in healthcare – https://youtu.be/GqEzUPQ6M_c (YouTube)
• Case study: Listening to marginalised voices in maternity, helping to reduce health inequalities
• Case study: Improving health outcomes by embedding patient voice in procurement.

Meet our patient interviewees…Phil has over 40 years’ experience as a Registered Nurse. His career began in a NHS Acute Trust, where he specialised in Intensive Care before moving into hospital general management, spending the last 20 years as a Senior Lecturer at a UK University teaching Undergraduate healthcare students. He joined HQIP’s Data Access Request Group (DARG) in 2024 as a patient representative, following a diagnosis of Dementia with Lewy Bodies, a type of dementia caused by abnormal protein deposits in the brain. These deposits cause chemical changes in the brain, leading to problems with thinking, movement, balance and more, and makes daily activities increasingly difficult over time. Phil is also involved with the work of Dementia UK and the Alzheimers Society in advocating for those living with Dementia.Wendy is a parent, working full time as a Data Manager for a large private healthcare company.  She has a number of complex heart conditions, including a mechanical heart valve, a pacemaker and Atrial Fibrillation. She also had a stroke three years ago, caused by Atrial Fibrillation. Wendy says her health has given her a deeper appreciation for life, and she is driven by a passion to make the most of every day.  She joined HQIP’s Data Access Request Group (DARG) in 2024, and loves being able to represent the public in key decisions about health data.  She also volunteers for the British Heart Foundation and the European Society of Cardiology.

This article was shared as part of Clinical Audit Awareness Week 2025. Have your say on #CAAW25: Feedback form.