“Our research in the North East and North Cumbria has found that many people have pre-existing deep-seated concerns about allowing the sharing of personal information, especially those in marginalised groups”.

Changes to the way the National Health Service handles patients’ personal information are in progress. These include the establishment of data flows from health records into environments. They will be accessible in new ways. NHS care providers will have access, as well as new external audiences for other uses. These include university researchers and commercial entities.

Alongside this, there is growing evidence of a pattern to data-related harms. Some groups face particular threats from datafication and data-sharing. They may be adversely affected within administrative, criminal justice, immigration, health, welfare, and/or social care systems. These groups include people living in poverty, trans people, and ethnic minorities. Threats include, but are not limited to, intensification of discrimination by various means.

There is already evidence that some people avoid seeking important medical help as a result of the NHS’s recent history of sharing information with other organisations. This has serious consequences for morbidity and mortality. This is not to say that people in marginalised groups don’t see the potential benefits to direct care. They appreciate that greater sharing of patient data is beneficial to day to day clinical practice, as well as for health data science.

Yet, even those who have the most positive views of data-sharing do not want others to have unfettered access to data in their NHS records. Moreover, risks are not equally spread across society. Our research captured such concerns. There is caution and hesitancy in overstating the advantages without clarity of the risk of harm of data-sharing.

We must consider the context of past sensitive data handling by NHS England, as well as the socio-political situation in the UK and globally. We must consider the use and sharing of personal data. These are essential considerations for understanding concerns about health and genomic data-sharing. An individual’s context does not create simple binaries of positive vs negative attitudes. Neither does it create easily quantifiable measures of acceptability in people’s minds.

There are urgent questions about mechanisms for accountability in protecting the privacy and the interests of the public. There has been a tendency to present ethical concerns within constrained trade-off scenarios. Such scenarios consider risks alongside benefits. Risks include privacy violation, and benefits include, for example, the development of new drugs. This does not allow a flexible engagement of the participants with the premises of the trade-off. We see little value in such artificially-constrained conversation. Moreover, public engagement work should not focus on majoritarian perspectives. It must not ignore the concerns about potential harms for vulnerable groups. We can enrich public engagement with careful consideration of the wider context surrounding the topic of interest and the wider lives of those we seek to engage, and thus seek social justice on this pressing issue.

• Dr Mwenza Blell is a NUACT fellow and Dr Stephanie Mulrine is a Researcher, both in the School of Geography, Politics and Sociology.

The INCLUDE guidance will ensure research teams consider ways of making health research more inclusive. It will that ensure under-served cohorts are more fairly represented in health research. It will adopt a more socially just approach to health research.

We have designed the guidance for use in conjunction with research. It will be particularly useful in the early stages of setting up projects.

Professor Lynn Rochester leads the NIHR Clinical Research Network (CRN) INCLUDE steering group. The group held discussions with key stakeholders and hosted a series of events. Together with ongoing research, this led to production of the guidance.

What is in the INCLUDE Guidance?

The guidance:

• summarises what an under-served group is
• provides a roadmap suggesting intervention points to improve inclusion
• provides examples of under-served groups and example barriers to inclusion

The guidance offers a suggested framework of questions to guide the deliberations of funders, researchers and delivery teams as they design and assess clinical research proposals.

It shares examples of good practice and other resources to guide teams. It will help the teams to engage with, and improve inclusion of, under-served groups in clinical research.

Why is there INCLUDE Guidance tailored to COVID-19 research?

The second INCLUDE guidance is COVID-19 specific. Professor Miles Witham explains the importance of addressing inclusivity in COVID-19 research by generating customised resources:

“COVID-19 has really focused everyone’s attention on how important it is to make sure that under-served groups can take part in research. These are the groups at highest risk from COVID-19. We have developed our COVID-19 guidance using the INCLUDE roadmap. Over the next few months, we will work wtth NIHR and other research organisations to promote the guidance to researchers designing studies, teams recruiting to studies, funders and regulators.

“Each disease or condition, and each region of the country, can use the INCLUDE roadmap to create their own guidance appropriate for different conditions and different under-served groups. One size doesn’t fit all, but the INCLUDE roadmap allows us to start meeting the needs of each different under-served group."

Find out more about INCLUDE

We have produced a video and written an article to provide more information about the project.

The INCLUDE website contains additional resources, information about partners and much more.

The National Institute for Health Research (NIHR) and NIHR Clinical Research Network supported this work.

• For enquiries or more information about INCLUDE, contact Eleanor Anderson (NIHR CRN Project Coordinator).

Applied Research Collaborations (ARCs) are National Institute for Health Research (NIHR) funded regional partnerships. Their members include:

• universities
• health and social care providers and commissioners
• local authorities
• charities and voluntary sector organisations
• businesses
• other NIHR bodies
• members of the public

They work to improve health and social care outcomes through high quality research and evaluation on local priority issues. They also work with other ARCs to tackle national challenges.

An ARC for the North East and North Cumbria

Our vision for the North East and North Cumbria is to achieve ‘Better, fairer health and care at all ages and in all places’.

We are a regional network of clinicians, public health and social care practitioners, policymakers, commissioners, service providers, charity and voluntary workers, lay members and researchers.

We focus on applied research and innovation to:

• prevent illness
• improve care and sustainability
• promote population health
• reduce health inequalities

The Northumberland, Tyne and Wear NHS Foundation Trust host the NENC ARC. They have partners across regional NHS, social care and higher education organisations.

The core funding provided by NIHR is £9 million for 5 years from October 2019.

Our objectives

Our ARC objectives are to:

• develop region-wide principles of research, co-production and evidence sharing
• conduct high quality applied research and implementation for priority health and social care issues which remains responsive to need and key policy drivers
• promote intersectoral work across all our research infrastructures
• build capacity in evidence generation and knowledge mobilisation
• enhance capability via skill-building and access to experts in evaluation methods
• enable public and patient partners to shape evidence generation and translation
• mobilise evidence to shape innovation with embedded process and outcome evaluation

Our research themes

The ARC consists of eight research themes focusing on priorities for the region. Included within these key themes are the following that overlap closely with social justice issues:

• Multimorbidity, ageing and frailty
• Supporting children and families
• Inequalities and marginalised communities

The gap between the supply of organs required for transplant for people on the waiting list and the number donated in the UK is increasing. It is particularly significant for members of ethnic minority populations.

We are finding out why people from Black, Asian and minority ethnic backgrounds give or refuse their consent to organ donation. We are sharing our findings with NHS Blood and Transplant. This will support their efforts to improve access to matched organs for more people from a BAME background who need a transplant.

This evidence synthesis project ran from January to September 2019. The National Institute for Health Research (NIHR) and NHS Blood and Transplant (NHS BT) provided funding.

We have developed positive links to key stakeholders. We did this by reaching out to:

• local community groups, including HAREF (Health and Race Equality Forum)
• members of the public
• public health bodies
• researchers, clinicians and students

The Project Advisory Group were also instrumental in developing links.

We have started sharing our findings and welcome interest from colleagues or external partners. Jenny Hasenfuss is the NIHR BTRU Organ Donation and Transplantation (ODT) Public and Patient Involvement and Engagement (PPIE) Lead. Based at Newcastle University, Jenny hopes to link up with individuals and community groups. She will share project findings and encourage interest in health research, and the idea of public and patient engagement.

Organ donation is a precious gift

The circumstances in which someone can be a donor are very specific. They accounted for only 0.5% of deaths in the UK in 2017/18. Blood type and tissue types are very important in ensuring a suitable match for an organ transplant. Some blood groups such as O Rhesus positive are more frequent among Black, Asian and minority ethnic (BAME) communities. Some rare blood types are only found within people from BAME communities.

We updated two previous systematic reviews. We hosted two public discussion groups in Newcastle, with people from BAME backgrounds. The groups critiqued the evidence resulting from the reviews about barriers and interventions to address them.

We used the COM-B model from the Behaviour Change Wheel (BCW) to map elements of Capacity, Opportunity and Motivation to address the barriers and change Behaviour. We linked these elements to potentially effective ‘intervention functions’ using the BCW. We looked for systematic review evidence for the effectiveness of these intervention functions across other areas of healthcare. Two further discussion groups in London critiqued examples of interventions.

Key findings

Registering for organ donation should be seen as a pathway. There is a need for awareness-raising interventions for people early in the pathway. There should also be individually targeted interventions for those who are considering joining the register.

We identified three key factors as vital components of interventions:

• trust
• difficult conversations – for example, relating to loss, bereavement, and the precious gift of organ donation to another family
• community engagement

The best evidence synthesis found a range of existing educational interventions for improving communication in families. It also provided a range of strategies for engaging communities and maintaining involvement. We found little systematic review evidence about increasing trust in an organisation.

The phrase ‘people from BAME backgrounds’ encompasses a very diverse mix of people. They may be from very different ethnic, religious, cultural and migrant backgrounds. It is inappropriate to assume similarities in outlook or opinion based only on a person’s ethnicity. Thus, interventions should not solely target ethnicity. We need to consider this ‘BAME’ construct in more depth in future research projects. We need to address ideas of intersectionality, social construction of race, cross-cultural communications and privilege.

The research team includes Dr Chris Marshall, Madeleine Still, Jenny Hasenfuss, Akvile Stoniute, Jodie Crooks, Prof Dawn Craig, Prof Falko Sniehotta, Prof Catherine Exley, Prof Andrew Fisher and Fiona Beyer.

Advisory Group

• NHS BT Research and Development Assistant Director Nick Watkins
• NHS BT Statistics Rachel Johnson
• Ammar Mirza CBE

The project team are grateful for the support and guidance shared by various colleagues. Special thanks go to Vijaya Kotur, Kelechie Dibie, the Newcastle University BAME staff network, Advisory Group member Ammar Mirza, facilitator Barbara Armstrong and to Jan Legge and Eugenie Johnson for their administrative support.

Access to good healthcare is a well-established social determinant of health. People living closer to healthcare services are much more likely to be healthy than people who do not. This is important, as an inverse care law exists. The research suggests that people living in the most deprived areas of the country have the poorest access to healthcare.

The NHS faces unsustainable pressures. There are 372 million GP consultations per year. 24 million people attend A&E services. Around 13% of these visits are for minor illnesses, which could be managed in other settings, such as the community pharmacy. Consultations for minor illnesses are costly to the NHS and reduce capacity to cope with more serious cases.

Pharmacies in the community

Community Pharmacies are the most accessible healthcare providers in England. They are more accessible than GP practices for many. Local Community Pharmacies are within 20 minutes walking distance for 89% of the population.

The positive pharmacy law is in contrast to the well-established inverse care law. It states that, in the most deprived areas of the country, community pharmacy access increases to 99.8%. So Community Pharmacies are a convenient option to help take the pressure off already stretched NHS services. This is particularly true in more disadvantaged areas.

Increasing the uptake of the flu vaccine

Community Pharmacies are highly accessible, particularly for hard to reach groups. In 2015, this informed a move to allow Community Pharmacies to offer the seasonal flu vaccine to eligible at-risk patients. This is offered as a national service. Before 2015, patients would have attended general practice to receive the vaccine or paid for it privately.

Since this change, there has been a rapid increase in the number of patients receiving the flu vaccine. Community Pharmacies have provided the vaccination to over 4 million patients. The scheme fits within the existing capacity of Community Pharmacies. Over 75% of them offer the vaccination, thereby reducing the burden for GPs.

Improving the success rate of smoking cessation

Community Pharmacies also deliver effective public health services, such as smoking cessation programmes. People who took part in these initiatives were more successful in quitting smoking than those who received the usual care.

Improving the health of local communities

Community Pharmacies are able to enhance public health in other areas, particularly in more deprived places. In 2017, Public Health England stated that “Commissioners should consider using community pharmacies to help deliver public health services”. In 2018, NICE recognised the accessibility of Community Pharmacies. They stated that they are “well positioned to promote health and wellbeing to their local community.”

• Clare Bambra is Professor of Public Health in the Population Health Sciences Institute
• Adam Todd is a Reader in the School of Pharmacy

Newcastle academics’ draft Bill proposes to fully restore the NHS as an accountable public service.

Professor Allyson Pollock and Peter Roderick have drafted a Bill that has been debated in Parliament. The Bill would reinstate the government’s duty to provide the key NHS services throughout England. These services include:

• hospitals
• medical and nursing services
• primary care
• mental health
• community services

Returning the NHS to a public service

The National Health Service Bill proposes that the NHS should return to being a public service. This would reverse the marketisation that has occurred over recent years. We would achieve this by:

• abolishing the purchaser–provider split
• ending contracting
• re-establishing public bodies and public services that are accountable to local communities.

“I believe the Health and Social Care Act 2012 forced a commercialised model on the NHS in England. The first thing it did was remove the duty on the Health Secretary to provide services throughout England. In effect, this makes commercial tendering virtually compulsory,” Professor Pollock said.

Among many other things, the Bill proposes to:

• introduce a system for collective bargaining across the NHS
• require the government to report every year to Parliament on the effect of treaties on the NHS
• integrate public health services and the duty to reduce inequalities into the NHS

The Bill gives flexibility in its implementation. It could be led by local authorities and current bodies. This would result in a ‘bottom-up’ process, where local and regional contexts are accounted for and acknowledged.

“The Bill proposes that the NHS should return to being a public service by reversing the marketisation that has been occurring over recent years.”

• Professor Allyson Pollock and Peter Roderick Principal Research Associate) in the Faculty of Medical Sciences at Newcastle University

Accessible toilets are often unavailable or inappropriate. This is a major barrier to disabled people’s participation in society.

Northumberland is a large, rural county with an ageing population. Researchers at Newcastle University worked in partnership with Carers Northumberland. Together, we examined the main barriers to social participation for older people, disabled people and carers.

Making public toilets accessible to everyone

We worked directly with services’ users and the organisations that represent them. It was very clear that a lack of available and appropriate toilets created major problems for opportunities to take part in society. It also became clear that accessibility is more complex than providers sometimes recognise.

We worked with Carers Northumberland and Northumberland County Council, supported by funding from ESRC.

The project has drawn on the experiences of disabled people and their carers. It identified the challenges that they face in accessing an appropriate toilet and solutions to this problem.

An example is a lack of clear colour contrasts between the furnishings and facilities of a public toilet. Without these, a person with a visual impairment may experience difficulties using the facility. But for a provider, using colour contrasts is very easy and cheap to do.

Organisations such as leisure centres, shopping centres, and cafes can do more to make their toilets accessible to a range of different users. They can make them more available to people, regardless of whether they buy anything.

To help organisations to do this, the project is producing a range of resources. These will help organisations make toilets better and more available, both effectively and cheaply.

This work has begun in Northumberland. It is now also beginning to spread outside the region, as the same challenges are faced across the United Kingdom.

The Nowhere to Go project began as a Politics undergraduate work placement with Carers Northumberland. It has grown into an ongoing partnership between Geography, Politics and Sociology researchers and key organisations in the region, such as Carers Northumberland and Northumberland County Council. We launched the first set of resources in December 2018.

“It became clear that the lack of available and appropriate accessible toilets was creating major problems for opportunities to leave home and participate in society.” – Professor Janice McLaughlin

• Professor Derek Bell (Professor of Environmental Political Theory)
• Mary Hull (Teaching Assistant)
• Professor Janice McLaughlin (Professor of Sociology)
• Libby Morrison (Geography)

We are exploring the diverse aspects of the relationship between well-being, law and society.

As one aspect of this, we are carrying out research into the issue of well-being and mental health in the legal professions and in universities.

There is growing concern across legal professions, both internationally and in the UK, about lawyer well-being and mental health. UK university law schools are seeing increasing concern around the well-being of their students. This is set against the backdrop of much evidence of poor mental health of both students and staff across the university sector.

Well-being in the legal profession and in Universities

Richard Collier is a Professor of Law. He has recently received funding from the Leverhulme Trust and the mental health charity Anxiety UK. The funding is to carry out research into the interconnections between well-being, law and social well-being in the legal profession.

Richard is currently writing a book on the subject, and is a member of the UK Legal Professions Wellbeing Taskforce. He is also conducting a funded project which is the first of its kind. The project explores the relationship between male senior management and gender equality. It also considers the intersections of equality, diversity and inclusion, and well-being in a UK university.

Questions of social justice are central to current debates about well-being, both in the legal professions and in UK universities. Taking well-being seriously is bound up with issues of equality, diversity and inclusion. It is a subject that reveals much about the changing nature of society. Complicated questions arise, such as:

• how organisations respond to evidence of a far greater awareness of the complex interactions between mental health and the workplace
• the need to work in more effective, efficient and safer ways

There are also generational shifts in attitudes. ‘Millennials’ and younger lawyers are much more willing to be open about mental health issues.

“In the context of a rapidly changing profession and marketplace for legal services, the very idea of well-being has, itself, become part of what it now means to be a good employer and to provide a first-class service to clients.”

• Professor Richard Collier is Professor of Law and Social Theory in the Law School at Newcastle University