Information reported directly by patients can be invaluable for assessing the impact of disease and treatment on patients’ symptoms and quality of life -but more needs to be done to include under-served groups to avoid rising inequalities in healthcare, say experts at BHP founder-member the University of Birmingham.

The information is commonly collected in both clinical trials and clinical practice and ensures that the patient’s perspective is at the heart of decision making. As use of these data become more commonplace, however, researchers in the University’s Centre for Patient-Reported Outcomes Research are calling for more to be done to ensure such information can be provided by everybody.

In an article published 5 May 2022 in Nature Medicine, researchers in collaboration with patients, regulators and international experts identify some of the barriers to participation such as access to technology, disability, language and cultural requirements and call for these to be addressed.

Lead author, Professor Melanie Calvert, said: “When we start to embrace new approaches to healthcare, such as use of patient-reported outcomes, we need to make sure that barriers to participation are addressed at an early stage. If we don’t do this, the gaps between advantaged and disadvantaged populations will only get worse.

“Representative diversity in clinical trials is vital to ensure new medicines and technologies are applicable to the population they are intended to serve. Targeted initiatives are needed to ensure that no groups are excluded from participation in patient-reported outcome data collection, both in research settings and routine clinical care.”

Specific recommendations in the article include:

• • • Improve diversity by involving individuals who represent target populations when designing patient questionnaires.
    • Consider the type and severity of disease when seeking patient views, including cognitive or functional impairment that would limit participation.
    • Be aware of cultural needs or languages that might be a barrier, and address these sensitively and appropriately.
    • Include individuals with all levels of reading, writing and problem solving abilities by ensuring material is accessible and that assistance is available, if required.
    • Provide alternative methods of participation to promote digital inclusion
    • Where information is being used in drug development, make sure inclusivity is included early on in discussions about data collection.

Rav Verdi, a patient partner who co-authored the work, said: “As a patient and living in a cosmopolitan society it’s encouraging to see that all walks of life have been considered and a means of communication thought about to glean information from the patient and to provide information to the patient regarding their care and treatment. As worldwide issue, information could be shared with treatment centres to provide better care and understanding of different groups of the population.”

Roger Wilson, a patient partner adds: “Listening to patients reveals the range of diversity which must be understood and allowed for by careful design if a study is to offer benefits to society equitably.”

Professor Calvert adds: “Patient-reported outcome measures and data collection must be reflective of diverse and multicultural societies, to improve research and promote equitable clinical care for the benefit of all patients and the public as a whole.”

The team are supported by a number of funders including the National Institute for Health and Care Research (NIHR) Biomedical Research Centre Birmingham and Applied Research Collaboration West Midlands, Health Data Research UK and UK SPINE.

A world-leading global surgical research team led from BHP founder member the University of Birmingham has received £7 million of funding to continue its life-saving work in developing countries – finding ways of increasing surgical capacity and preventing post-operative complications.

The NIHR Global Health Research Unit on Global Surgery (NIHR GSU) will focus on training non-surgeons to perform essential hernia operations – hernias posing a major problem with five million patients awaiting surgery in sub-Saharan Africa, stopping young men from providing for their families.

The team will also continue its work in boosting post-operative recovery in Low- and Middle-income Countries (LMICs) – testing simple innovations such as the use of high-dose oxygen, mouthwashes and inhalers.

Researchers are also looking to bring innovation back into the health systems of high-income countries by piloting innovative practices in LMICs – proving their worth ahead of wider roll-out.

Established in 2017, the new NIHR funding will allow the GSU to continue its global research for at least a further five years. The Unit co-ordinates a global network of surgeons that includes over 20,000 clinicians from over 100 countries.

Based at the University of Birmingham, it is co-directed by Professor Dion Morton OBE, Barling Chair of Surgery and Professor Stephen Tabiri, Dean of the Medical School at University for Development Studies in Tamale, Ghana.

Professor Dion Morton commented: “Delivering safe and effective surgical care across the world is one of the greatest challenges facing global health today. Our work impacts the most disadvantaged and vulnerable populations of the world – we are training surgeons in these countries to continue the research drive that is helping to save lives.

“Surgical capacity is a critical issue – a matter of life and death. In many developing countries, there are simply not enough surgeons to deliver the operations that are needed – there are less than 100 general surgeons working in the Benin health service to serve a population of 12 million people.

“Equally, it’s no use performing more operations if patients are at risk of dying from post-operative complications. Simple but effective steps in reducing risks such as surgical site infection (SSI) – the most common post-surgical complication – will be vital in ensuring improved health outcomes for people living in LMICs.”

The GSU’s international cohort studies are open to all collaborators – whether medical students, clinical officers, doctors, nurses or researchers. The team works across clinical disciplines with healthcare professionals, policy makers, epidemiologists, economists, patients and community members.

The GSU provides the tools and infrastructure to help surgeons around the world to sustain the research drive that will increase surgical capacity in LMICs.

A ‘hub and spoke model’ helps the GSU co-ordinate surgical research globally in seven LMICs: India, South Africa, Rwanda, Nigeria, Benin, Ghana and Mexico. Each hub acts as an independent research centre for conducting clinical trials and cohort studies, as well as supporting local and international research training and education. The network consists of more than 100 urban and rural hospitals in these seven countries, some in the most remote parts of the world.

The GSU runs a range of cohort studies, qualitative research and clinical trials aimed at:

• • Reducing complications from surgical wound infection;
  • Improving outcomes from cancer surgery;
  • Improving perioperative care;
  • Developing the surgical workforce;
  • Providing a roadmap for resilient surgical systems during and post pandemics;
  • Evaluating access to healthcare for surgical patients; and
  • Developing surgical research relevant to rural surgery

A new project has been launched across BHP members, aiming to address racial and ethical health inequalities using artificial intelligence (AI).

STANDING Together, being led by BHP founding member University Hospitals Birmingham NHS Foundation Trust (UHB), aims to develop standards for datasets that AI systems use, to ensure they are diverse, inclusive and work across all demographic groups. The resulting standards will help regulators, commissioners, policymakers and health data institutions assess whether AI systems are underpinned by datasets that represent everyone, and don’t leave underrepresented or minority groups behind.

Xiao Liu, Clinical Researcher in Artificial Intelligence and Digital Healthcare at the University of Birmingham and UHB, and STANDING Together project co-leader, said: “We’re looking forward to starting work on our project, and developing standards that we hope will improve the use of AI both in the UK and around the world. We believe AI has enormous potential to improve patient care, but through our earlier work on producing AI guidelines, we also know that there is still lots of work to do to make sure AI is a success stories for all patients. Through the STANDING Together project, we will work to ensure AI benefits all patients and not just the majority.”

NHSX’ NHS AI Lab, the NIHR, and the Health Foundation have awarded in total £1.4m to four projects, including STANDING Together. The other organisations working with BHP on STANDING Together are the Massachusetts Institute of Technology, Health Data Research UK, Oxford University Hospitals NHS Foundation Trust, and The Hospital for Sick Children (Sickkids, Toronto).

The NHS AI Lab introduced the AI Ethics Initiative to support research and practical interventions that complement existing efforts to validate, evaluate and regulate AI-driven technologies in health and care, with a focus on countering health inequalities. Today’s announcement is the result of the Initiative’s partnership with The Health Foundation on a research competition, enabled by NIHR, to understand and enable opportunities to use AI to address inequalities and to optimise datasets and improve AI development, testing and deployment.

Brhmie Balaram, Head of AI Research and Ethics at NHSX, said: “We’re excited to support innovative projects that demonstrate the power of applying AI to address some of our most pressing challenges; in this case, we’re keen to prove that AI can potentially be used to close gaps in minority ethnic health outcomes. Artificial intelligence has the potential to revolutionise care for patients, and we are committed to ensuring that this potential is realised for all patients by accounting for the health needs of diverse communities.”

Dr Indra Joshi, Director of the NHS AI Lab at NHSX, added: “As we strive to ensure NHS patients are amongst the first in the world to benefit from leading AI, we also have a responsibility to ensure those technologies don’t exacerbate existing health inequalities. These projects will ensure the NHS can deploy safe and ethical Artificial Intelligence tools that meet the needs of minority communities and help our workforce deliver patient-centred and inclusive care to all.”

The STANDING Together team can be contacted at contact@datadiversity.org