Patient and Public Involvement in Health Data: A New UK-Wide Mapping Project

27 Feb 2026

We are delighted to announce that HQIP has been commissioned by Understanding Patient Data to lead a new national project exploring how patients and the public are involved in decisions about health and care data.

Health data plays an increasingly important role in research, service planning, and quality improvement. This project will help ensure that these decisions are informed by meaningful patient engagement, strengthening public trust and improving how data is used for the benefit of patients and communities.

The project will build a whole-system understanding of who is involved in health data decision-making, how influence happens, what is working well, and where further support is needed. By mapping current practice and identifying opportunities for improvement, it aims to strengthen inclusive, transparent, and sustainable approaches to public involvement.

Clare Fountain, Associate Director at HQIP, said: “There is significant patient and public engagement in health data across the UK, but we don’t yet have the full picture. This project will support whole-system understanding of who is doing what, what is working well, and where the challenges lie.”

By combining Understanding Patient Data’s focus on transparency and public trust with HQIP’s expertise in quality improvement and data governance, the project will help ensure that patient and public insight genuinely shapes how health data is used.

Getting involved

The project will run over the coming months and will involve interviews, focus groups, and a UK-wide survey with organisations, professionals, and public contributors working in health data. Findings will inform practical recommendations and resources to support stronger, more consistent involvement across the system.

For updates on this project, and how to get involved, subscribe to our mailing list. You can also follow HQIP on LinkedIn and X: @HQIP.

If you work with health data, policy, or public involvement and would like to contribute, we would be pleased to hear from you. Please contact: PPIEinhealthdata@hqip.org.uk.

Latest news: February 2026 eBulletin

25 Feb 2026

The February edition of HQIP’s eBulletin is out now! It features the latest news and updates relating to clinical audit, outcome reviews and data-informed healthcare improvement, including:

What’s new?

  • Clinical Audit Awareness Week – awards categories announced and promotional materials
  • Patient perspective article: Why patients are the route to real results
  • Article: Integrating clinical audit and quality improvement to deliver impact for patients
  • Benchmarking data published.

A chance to revisit:

  • Latest reports and data
  • DHSC announces new National Cancer Plan
  • NHS England publishes Clinical audits and registries – A best practice guide.

In other news:

  • NJR’s contribution to the development of GIRFT’s new Greener pathways guide
  • NCMD webinar: Understanding consanguinity related child deaths
  • NRAP Senior Clinical Lead opportunity
  • NRAP Adult Lived-Experience Respiratory Panel opportunities.

Read HQIP’s latest eBulletin here.


Don’t forget to sign up: Keep up to date with our latest news, events and work programmes by subscribing to our mailing list today. You can also follow us on: LinkedIn and X: @HQIP

Benchmarking data published

19 Feb 2026

The following dataset has been published on the National Clinical Audit Benchmarking (NCAB) website, HQIP’s online portal which provides access to national audit performance data.

NCAB is an online portal, hosted by HQIP, which provides access to national audit performance data. Users do not need to register, and can access audit benchmarked data searchable by speciality, Trust, hospital or unit. For all datasets currently published, go to the NCAB site.

GIRFT Greener Pathways – a sustainability collaboration

13 Feb 2026

The National Joint Registry (NJR), hosted by HQIP, has been a key contributor to the development of GIRFT’s new ‘Greener Pathways’ guide to decarbonising the hip replacement pathway, which has been written to support the NHS to reduce environmental impact while improving patient care.

Development of the guide has been in collaboration with: Greener NHS, the Royal College of Anaesthetists, the British Orthopaedic Association, the British Association of Day Surgery, the British Orthopaedic Trainee Association, the British Hip Society, the Royal College of Surgeons of England (RCS), the Sustainable Health Systems Hub. The mix of collaborators has enabled the guidance to be shaped by input from leading clinical experts spanning primary to tertiary care, as well as having benefitted from the involvement of patients.

The guide lists 13 high-impact and practical clinical recommendations for decarbonising elective hip replacement surgery, covering every step of the patient pathway from community care and referral through to pre-, peri- and post-operative processes. For each recommendation, the potential annual emissions reduction, should the recommendations be carried out, is also given.

Each of the recommendations is supported with key actions to achieve carbon saving (for example, rationalising equipment in surgical tray sets and using absorbable sutures instead of staples), as well as a rationale for the changes and the benefits for both patients and the NHS.

Further information and the full guide are available on NJR’s website.

New resources published February 2026

12 Feb 2026

We are pleased to announce that the following NEW RESOURCES to support improvement in healthcare, from HQIP’s audits and programmes, have been published:

  • Child mortality: Understanding consanguinity related child deaths; National Child Mortality Database (NCMD). This report on the deaths of children who were born to parents who are blood related shows an increased risk of death from genetic conditions.
  • Lung cancer: Lung cancer State of the Nation 2026; National Lung Cancer Audit (NLCA, part of NATCAN). Contains key findings and recommendations related to care received by people diagnosed with lung cancer in 2024 in England and Wales.
  • Mental health: Suicide annual report, data 2013-2023; National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH). A review of suicides by patients in the UK and Jersey over 2013-2023, which contains five clinical messages for healthcare providers.

Further data

In addition, we are pleased to share that the following data is also available:

  • Cardiovascular disease: CVDPREVENT has updated their Data & Improvement Tool and Quality Improvement Data Packs (for ICBs), which now include data to the end of Sept 2025 for the majority of metrics, plus outcomes data which is now updated with June 2025 data.

All reports: All HQIP-commissioned reports can be accessed via our dedicated reports webpage.

Stay up to date: Join our mailing list to receive notifications when new reports are published.

Patient Perspective: Why Patients are the Route to Real Results

12 Feb 2026

Patient representative, Sadia, tells us why patient voice and data must shape healthcare improvement.

When Sadia first came across HQIP’s Service User Network (SUN), she wasn’t particularly looking for a new commitment – but she was keen to make a difference. Having taken part in patient engagement activities for a local research initiative previously, she was ready to contribute to something broader; something that would have national impact. What she found was a community where her voice – and the voices of people like her – could help shape the quality of healthcare across the country for everyone. Here she explains why patient involvement is important, and why it goes hand in hand with sharing healthcare data.

“When I saw the SUN network, it sounded exactly what I was looking for.” What stood out to her first was the tone of the advert: welcoming and flexible. “It said I could be involved as much or as little as I wanted. That really reassured me; it meant that I could contribute as and when I was able.” She signed up immediately. It was the beginning of a relationship that brought benefit to HQIP’s programme of national clinical audits as well as wider healthcare. It was also a relationship that saw Sadia develop her understanding of the value of patient voice, and the use of data, in changing healthcare for the better.

Why patient voice matters

For Sadia, the case for involving patients in healthcare improvement is simple and powerful. “We’re the ones receiving the care. We’re the only ones who can tell you if it’s working or not.” She has seen first-hand how involving patients early can prevent problems later on, and save time and effort. “If you include patients in discussions around care initiatives, they’ll spot issues before you roll them out – and they’ll help you to fix them. It makes care relevant, more efficient, and ultimately supports staff too.”

Improving care for everyone

Sadia, who has premenstrual dysphoric disorder (PMDD, a condition that took 12 years to be diagnosed), speaks candidly about her healthcare journey. As a British-South Asian woman under 30, she has faced many assumptions about her and her care. But change, she says, is happening. In her case, she connects this directly to women’s involvement. “When I was growing up, most research was done by men, for men, about men. Now we’re seeing much more research led by women, and that is focused on women’s health – and the involvement of female patients has played a key role too.” She believes that change has been possible in part because patients have demanded to be part of the solution: “We go through this, you should be studying us with us.”

Today, when she visits her doctor, they immediately know what PMDD is and what emerging treatments are being explored. “It gives me hope. Five or ten years ago, that wouldn’t have happened, and I’m grateful – not just for me, but for all the others with my condition.”

How data shapes better care

Sadia is open about once feeling hesitant about consenting to sharing her health data. “Healthcare hasn’t always focused on people like me, so I was unsure if it would be of benefit. But, through being involved with HQIP, I can see that sharing [anonymised] data is an important part of creating better services and outcomes.” For her, data and patient voice are equally important: “You need both to understand how care is working and where improvements are needed.” She also sees data sharing as essential to equity. “If someone like me doesn’t share my data, there won’t be relevant information to shine a light on conditions that affect people like me.”

What does patient engagement mean in practice?

Since joining HQIP’s Service User Network (SUN), Sadia has taken part in a wide range of activities, including reviewing reports, contributing to the development of resources, speaking at conferences, and generally offering insights based on both her personal experiences and those of people for whom she cares. “My father has cardiovascular disease, and I have been able to contribute, not just as a patient but also as a carer. Being able to bring that perspective into a meeting, and see it valued, was fantastic.”

The variety of opportunities is something she genuinely appreciates. “I feel like I’ve only touched the surface, in terms of what I could get involved in. But the great thing is, if you aren’t selected for one opportunity, another comes along quite soon. It is always very rewarding.”

A shared journey to continuous improvement

While Sadia says that she wouldn’t have chosen to go through the healthcare journey she has, she recognises that it does put her in a unique position of being able to benefit others, through patient engagement. “It did lead me to something meaningful,” she reflects. She is comforted that she is helping to shape a healthcare service that listens, learns, and improves.

For HQIP, Sadia’s story embodies exactly why patient involvement is critical for patient-centred, evidence-informed improvement in care. It deepens understanding. It ensures relevance. And, ultimately, it leads to care that meets the needs of real people. Or, as Sadia puts it: “If you’re listening to your patients, you’re going to get things right more often.”

Further information

National Cancer Plan published

5 Feb 2026

The Government has published a new National Cancer Plan for England, which aims to ensure that patients will receive faster diagnosis, quicker treatment and the support to live well with cancer.

National cancer audits have a pivotal role to play in improving care and outcomes for people with cancer, by shining a light on where care is working well and where improvements would have maximum impact. This Plan acknowledges the “excellent work” of the HQIP-commissioned National Cancer Audit Collaborating Centre (NATCAN), which hosts the 10 national cancer audits covering a range of common cancers including lung, breast and bowel cancer.

NATCAN, which was established in late 2022 as a national centre of excellence, has worked closely with healthcare providers to deliver a number of significant improvements in care and patient outcomes. For example, the National Bowel Cancer Audit (NBOCA) has found that 90-day postoperative mortality has almost halved over the past decade. Another example from the NBOCA is a significant improvement in the two-year postoperative survival rate, resulting in approximately 1,150 additional people surviving two years after surgery (2021/22 saw a 5-percentage-point increase compared with 2012/13).

The National Cancer Plan provides an opportunity for the national cancer audit programme to build on this work, and HQIP will ensure that it is designed to meet the ambitions of, and contribute to the delivery of, the Plan – by, for example, giving “Cancer Alliances and trusts the data they need to drive improvement” (Action 13 from the Plan). By working together, to use the data and insights available through NATCAN’s online data dashboards to deliver real-world improvements, the clinical audit and healthcare communities can support the Government to achieve the aims set out in the Plan, offering cancer patients faster diagnosis and quicker treatment, and supporting them to live well.

Further information about cancer care data from HQIP

  • Bowel cancer report, published Oct 2025 (National Bowel Cancer Audit, NBOCA)
  • Kidney cancer report, published Sept 2025 (National Kidney Cancer Audit, NKCA)
  • Lung cancer report, published April 2025 (National Lung Cancer Audit, NLCA)
  • Metastatic breast cancer report, published Sept 2025 (National Audit of Metastatic Breast Cancer, NAoMe)
  • Non-Hodgkin Lymphoma report, published Sept 2025 (National Non-Hodgkin Lymphoma Audit, NNHLA)
  • Oesophago-gastric cancer report, published Sept 2025 (National Oesophago-Gastric Cancer Audit, NOGCA)
  • Ovarian cancer report, published Sept 2025 (National Ovarian Cancer Audit, NOCA)
  • Pancreatic cancer report, published Sept 2025 (National Pancreatic Cancer Audit, NPaCA)
  • Primary breast cancer report, published Sept 2025 (National Audit of Primary Breast Cancer, NAoPri)
  • Prostate cancer report, published Oct 2025 (National Prostate Cancer Audit, NPCA)

More information about NATCAN

Benchmarking data published

2 Feb 2026

The following dataset has been published on the National Clinical Audit Benchmarking (NCAB) website, HQIP’s online portal which provides access to national audit performance data.

NCAB is an online portal, hosted by HQIP, which provides access to national audit performance data. Users do not need to register, and can access audit benchmarked data searchable by speciality, Trust, hospital or unit. For all datasets currently published, go to the NCAB site.

NHS England Clinical audits and registries guide published

2 Feb 2026

This week, NHS England published Clinical audits and registries: A best practice guide, which is aimed at both owners and administrators of new and existing health care audits and registries, including NHS England.

This guidance sets out a unified approach for commissioning and overseeing clinical audits and registries across the NHS in England, and within the audit and registry community. Its objectives are to “support audits and registries owners and commissioners to work in partnership with NHS England”, and act as a “reference tool for those participating in the process”. More specifically, it states that “its primary aim is to ensure systems deliver timely, actionable insights that support clinical decision-making, enhance patient safety, improve healthcare quality and reduce inequalities in access and outcomes.”

The guide sets out the sources of clinical audits and registries that NHS England supports, and this includes the National Clinical Audits and Patient Outcomes Programme (NCAPOP), as one of “those clinical audits that are directly or indirectly funded and commissioned by NHS England’s Medical Directorate via the Healthcare Quality Improvement Partnership (HQIP)”. It outlines the key considerations for the NCAPOP and other NHS England-commissioned sources, namely:

  • Compliance with NHS England’s statutory responsibilities
  • Joined-up approach to clinical leadership and governance
  • Appropriate data use and analysis
  • Data and analytics infrastructure to streamline information governance
  • Clarify responsibilities for ensuring detection of unwarranted variation and outliers
  • Clear process for commissioning and decommissioning audits and registries.

In relation to defining and managing outliers, this guide cites HQIP’s Outlier management for national clinical audits as an example that “sets out the definition and statistical process used to identify alarms and alerts. It includes the need to identify positive outliers to celebrate clinical excellence and include non-participation as an outlier flag.” It also mentions the HQIP-hosted National Joint Registry (NJR) as an example that “adopts a more intensive ‘accountability and transparency’ model.”

The guide recognises that clinical audits and registries are a key part of a wider NHS quality management system and how they support quality improvement (QI), and includes many HQIP-commissioned programmes as examples:

This document goes on to outline the roles and responsibilities for frontline clinicians and managers, healthcare providers, regional commissioners and ICBs, and NHS England. It also sets standards for working in partnership with others across the sector, including patients, parents, carers and the public, who should be involved in the “design, implementation and evaluation of clinical audits and registries”.

While the guide states that it “does not set out the future direction for audits and registries or how commitments arising from the 10 Year Health Plan and the Dash Review of Patient Safety across the Health and Care landscape will be implemented”, it does say that it is “aligned to the aims of both the 10 Year Health Plan and Quality Strategy”.

Read the guide in full: www.england.nhs.uk/long-read/clinical-audits-registries-best-practice-guide

Notes: 1) While focused on England, the guide acknowledges the cross-border relevance of many audits and registries, including those involving Wales, other devolved nations, crown dependencies and international collaborations. 2) It is a dynamic working document which may be amended to align with evolving needs and the new quality strategy. The guide will be regularly reviewed and updated by NHS England in partnership with colleagues from the audits and registries community.

Further resources from HQIP

  • Discover more about how HQIP supports organisations to use clinical audit and healthcare data to drive improvement – from strategy development to implementation or training
  • Guidance and other resources to support improvement
  • Reports and infographics
  • Benchmarked results, searchable by project name, trust, hospital or unit

Integrating clinical audit and quality improvement to deliver impact for patients

1 Feb 2026

HQIP Associate Director, Dr Iain Smith, features in BMJ Leader Blog this month, on the subject of integrating clinical audit and quality improvement to deliver impact for patients…

Fit-for-the-Future, the ten-year plan for the English NHS, envisages a focus on quality and improvement driven by data.1 The plan acknowledges the wealth of data available nationally – including through clinical audits.1 Furthermore, new best practice guidance from NHS England argues for clinical audit contributing to a wider quality management approach.2

Historically, clinical audit is one of the main mechanisms for improvement in healthcare and is closely associated with quality assurance. More recently, approaches to quality improvement have been adopted into healthcare from other industries focussing on small-scale tests of change and learning – typically with measurement as a key element.3 Whilst tensions between clinical audit and other quality improvement approaches have been observed, both can work in synergy and clinical audit can play a key role in moving towards more systematic data driven quality management.2 4

Background: Clinical Audit and Quality Management

Continuous improvement is a long pursued goal in healthcare.5 A long standing approach to improvement is clinical audit.  Clinical audit involves assessing services against evidence-based criteria and is considered the foundation of a well-functioning healthcare system. It is a cyclical approach that provides feedback upon which action can be taking on areas for improvement before re-auditing to assess the impact (see Figure 1 below).2 6 7

Improvement efforts are more impactful when part of a systematic approach.8 9 Quality management systems (QMS) are a means of systematically improving healthcare and embedding continuous improvement. A QMS combines a systematic approach to quality improvement (QI) with quality planning and quality control.9-11 Quality planning refers to how an organisation or system identifies its priorities for improvement and designs interventions to deliver them.10 Quality planning ensures close alignment of improvement activity with the strategic objectives of the organisation or system.10 11 Quality control refers to measurement of processes to monitor performance in real time and taking action to deliver results in line with performance standards.10 11 In addition to these three core components of a QMS, in healthcare a fourth component is included. Quality assurance focuses on checking whether a service is meeting required standards based on external requirements.9 11 Clinical audit can play a key role across such systematic approaches.12

Figure 1 – The Clinical Audit Cycle (HQIP 2020, used with permission)

Clinical Audit and Quality Planning: Identifying opportunities for improvement

Clinical audit can support progress on national healthcare priorities by considering findings in planning activities. Clinical audit can contribute insights to service planning and commissioning processes by providing both cross-sectional benchmarking and longitudinal data.1 2 The national clinical audit and outcomes programme (NCAPOP) is one of the largest national audit programmes of its kind and can play a major role in the planning process and identification of improvement priorities.12 If healthcare priorities are to be evidence-based, clinically credible and focused on what matters most to patients, this data should shape how services are designed and inform which improvement priorities are selected. For example, the national mothers and babies audit (MBRRACE-UK) identified persistent inequalities in maternal and perinatal outcomes linked to ethnicity, deprivation, and geography. These findings enabled providers, commissioners and national bodies to prioritise targeted improvement efforts focussing attention on highest risk groups.13 14

Clinical Audit and Quality Improvement: Improving patient care and outcomes

Clinical audit is a quality improvement process that seeks to improve patient care and outcomes. A long-standing approach that has stood the test of time, clinical audit can continue to play a leading role in improving processes and outcomes nationally and locally. Through assessment against evidence-based standards for the structure, processes and outcomes of care, changes can be implemented where indicated and monitored to confirm improvement.7 Clinical audit also works alongside other popular approaches to QI – such as Lean and the Model-for-Improvement. These approaches support experimentation and testing in the ‘implementing change’ stage of the audit cycle.4 Therefore, if we want improvement that is data-driven, evidence-informed and clinically trusted, clinical audit should be central to any systematic QI approach. For example, the fragility fracture and falls audit programme (FFFAP) provides the national audit of inpatient falls (NAIF) which has seen improvements in its key indicators over the past six years. NAIF also provides resources to support local quality improvement projects.15

Clinical Audit and Quality Control: Ongoing measurement of quality

Clinical audit supports quality control processes by providing evidence of impact of changes introduced. In improvement work, to assess tests of change, a family of metrics is used comprising process and outcome measures.3 Audit is ideally placed to contribute to this and help improvement efforts to know whether changes lead to improvement. Whilst audits have been carried out previously at distal points in time, such as annually, there are examples of audits operating more frequently. With increasing focus on digital technologies, further shifts towards real-time audit are anticipated.1 For example, the paediatric intensive care audit network (PICANet) provides continuous, risk-adjusted monitoring of outcomes, allowing providers and national bodies to track trends in mortality, detect variation and identify emerging quality concerns.16

Clinical Audit and Quality Assurance: Evidence based compliance with standards

Quality assurance processes help organisations to understand care quality through periodic checks that particular standards are being achieved and addressing identified shortfalls.2 11 Alongside inspection and accreditation, clinical audit is one of the main quality assurance mechanisms used by healthcare organisations.4 11 Clinical audit is effective for providing assurance of compliance with evidence-based standards – including national standards via national audits.

Clinical audit is one of the earliest forms of QI in healthcare. Whilst typically associated with quality assurance, clinical audit can play a key role across all quality management domains including planning, control and improvement. To provide confidence that care is consistently safe, effective and improving over time, clinical audit should underpin how we improve and monitor for proactive oversight and quality control.”

This article was published as a blog on BMJ Leader on 9th Feb 2026: Quality management and clinical audit: Integrating clinical audit and quality improvement to deliver impact for patients. By Iain Smith – The official blog of BMJ Leader

Further resources from HQIP

  • Discover more about how HQIP supports organisations to use clinical audit and healthcare data to drive improvement – from strategy development to implementation or training
  • Guidance and other resources to support improvement
  • Reports and infographics
  • Benchmarked results, searchable by project name, trust, hospital or unit

References

  1. Department of Health & Social Care and NHS England. Fit for the future: 10 Year Health Plan for England. London: UK Government, 2025.
  2. NHS England. Clinical audits and registries: A best practice guide. London: NHS England (Available at https://future.nhs.uk ), 2026.
  3. Shah A. Using data for improvement. BMJ 2019;364:l189. doi: https://doi.org/10.1136/bmj.l189
  4. Backhouse A, Ogunlayi F. Quality improvement into practice. BMJ 2020;368:m865. doi: https://doi.org/10.1136/bmj.m865
  5. Berwick D. Continuous Improvement as an Ideal in Healthcare. New Engl J Med 1989;320(1):53-56. doi: https://doi.org/10.1056/nejm198901053200110
  6. Ivers N, Foy R. Audit, Feedback, and Behaviour Change. Cambridge: Cambridge University Press, 2025.
  7. HQIP. Best practice in clinical audit. London: Healthcare Quality Improvement Partnership (Available at www.hqip.org.uk ), 2020.
  8. Dixon-Woods M, Martin GP. Does quality improvement improve quality? Future Hospital Journal 2016;3(3):191-94. doi: https://doi.org/10.7861/futurehosp.3-3-191
  9. Spela Godec MH, John Illingworth, Carl Macrae. Developing whole-organisation Quality Management Systems in health care: learning from practice and recommendations for progress. London: The Health Foundation, 2025.
  10. Glassborow R. Moving from Quality Improvement to Quality Management: Supporting better quality health and social care for everyone in Scotland. Edinburgh, UK: Healthcare Improvement Scotland (Available at www.ihub.scot ), 2022.
  11. Shah A. How to move beyond quality improvement projects. BMJ 2020;370:m2319. doi: https://doi.org/10.1136/bmj.m2319
  12. Clark CI. Healthcare data: The key to improvement and efficiency [Blog]. London: BMJ Leader; 2025 [updated 03 Dec 2025. Available from: https://blogs.bmj.com/bmjleader/2025/12/03/healthcare-data-the-key-to-improvement-and-efficiency-by-dame-celia-ingham-clark accessed 19 Jan 2026 2026.
  13. MBRRACE-UK. Maternal mortality 2022-2024 Oxford: National Perinatal Epidemiology Unit; 2026 [updated 15 Jan 202627 Jan 2026]. Available from: https://www.npeu.ox.ac.uk/mbrrace-uk/data-brief/maternal-mortality-2022-2024.
  14. NHS England. The Maternal Care Bundle: A care bundle for reducing maternal mortality and morbidity London: NHS England; 2026 [updated 16 Jan 2026. Available from: https://www.england.nhs.uk/long-read/the-maternal-care-bundle/ accessed 26 Jan 2026.
  15. National Audit of Inpatient Falls (NAIF). Stepping towards improvement: an analysis of 2024 inpatient falls audit data and reflection on 6 years as continuous audit. London: Royal College of Physicians (Available at https://www.rcp.ac.uk/86396 ), 2025.
  16. Universities of Leeds and Leicester. The Paediatric Intensive Care Audit Network (PICANet): PICANet; 2026 [Available from: https://www.picanet.org.uk accessed 27 Jan 2026.