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November 2021

Co-researchers drive co-production workshop

Illustration of hands clapping on pink background

The collaborative workshop involved people without prior research experience throughout the research cycle.

At the end of October, Dorota Chapko and Kabelo Murray from our Patient, Public, Community Engagement and Involvement Theme, with their Imperial College colleagues at the Patient Experience Research Centre (Jane Bruton, Vas Papageorgiou) and the Institute of Global Health Innovation (Dr Lindsay Dewa) ran a 3-hour workshop on research co-production, as part of the Research Methods eFestival organised by the National Centre for Research Methods.

What was special about this workshop was the fact that it was co-designed and co-delivered by co-researchers, which means individuals with lived experiences of different health conditions (or different identities) who were involved in a research project throughout the entire research cycle without prior research experience.

The co-researchers represented two different organisations: Heart n Soul, which is an arts organisation for people with learning disabilities and autistic people, and Positively UK for people living with HIV, as well as a team of young people with experience of mental health difficulties.

Together, co-researchers came up with 5 ‘Key Messages’ for what reserch co-production is and how it should be done. These are:

  1. Share power

  2. Co-production can help you to connect with people

  3. Remain connected

  4. Use clear language and make things simple

  5. Be kind, have fun, and learn from each other!

By meeting teams representing different ‘lived experiences’, all academics and non-academics across the three projects had a chance to evaluate their ‘co-research’ from a different perspective, including the relational skills that they built throughout ‘co-research’, and challenge their own assumptions about their co-research practices. This way, collectively, we have produced exemplar evidence for how to involve people of different ‘lived experiences’ in health and social care research, and identified essential behaviours and practice.


"Working with co-researchers from Heart and Soul and PositivelyUK was a truly powerful experience for me. I often contend with the distance between academics and those that we research with. However, this eFestival, and working with the coresearchers reminded me both of the importance and impact that working in a co-produced manner can have. It has helped me reorientate how I want to research and the type of work I want to do as I develop myself as an academic and a researcher."

Kabelo Murray, Public and Patient Involvement Manager, NIHR ARC NWL


This overall, made it a truly inclusive event, challenging the current PPIE practices within academic and health care settings. Those involved received great feedback for our workshop that served as an eye-opener for what would look like a good research co-production practice and why.

Robyn, a co-researcher from Heart n Soul who is autistic, commented on social media about participation in the project: “If you are not learning, you are not engaging in the right way”.

The Heart n Soul co-research story is summarised in this fantastic video: Heart n Soul at the Hub on Vimeo

Collaborative Learning Event Makes a Difference

Researchers, practioners, patients, members of public and interested stakeholders made up the 95 attendees for our virtual autumn Collaborative Learning Event. Led by our Collaborative Learning and Capacity Building theme they heard first-hand updates from researchers on the work being carried out by NIHR ARC NWL and the impact it is having.

The overarching theme of the event was “making a difference” and presentations, discussions and workshops focussed on improving outcomes for patients and the public and improve the quality, delivery and efficiency of health and care services.

A diverse learning opportunity

The event was opened by Prof. Azeem Majeed, ARC NWL Director, who commented after the event:

“We were very pleased that our Autumn Collaborative Learning Event was able to go ahead. Many thanks to the organisers for rapidly changing the event to an online format in view of the ongoing COVID-19 pandemic. We heard from Laura Lennox about how implementation research is addressing the long-standing health inequalities in NW London; and from Sandeepa Arora and Meryem Cicek about why high-quality data from health and care records is essential for our work."


"Our workshops explored key issues in the delivery of healthcare such as the use of remote consultations. We were also very pleased to hear from Dr Emma Vaux about how to fill the gap between evidence and practice. It was great to meet friends, colleagues, collaborators and partners. We look forward to taking the learning from the events forwards in our future ARC work.

Exploring our research themes

A diverse range of breakout sessions were held for each of the seven ARC NWL research themes and interactive discussions and workshops covered the following topics:

Recordings of the sessions will soon be available on our YouTube channel.

Bridging the gaps

The keynote presentation for the day titled ‘Making a difference: How do we bridge those gaps?’ was delivered by Dr Emma Vaux, Consultant Nephrologist and General Physician at the Royal Berkshire NHS Foundation Trust. She described the challenges and opportunities that present themselves when trying to implement evidence-based practice. She highlighted the equal importance of bridging together the worlds education, care and systems to create positive change.

Improvement Leader Fellowship graduation

The Improvement Leader Fellowship Programme is an important part of the Collaborative Learning and capacity Building theme, it aims to develop future leaders in innovation and improvement with the authority and ability to advance change in their organisations and beyond. The event gave Rowan Myron, Associate Professor for Healthcare Management/Education Lead, who leads the Fellowship, an opportunity to celebrate their work thank the Fellows as they graduated.

Find out more about our Improvement Leader Fellows.

Catch up

The event was tweeted live using #makingadifference2021 and recordings will be available from our YouTube channel. To receive a notification of our next Collaborative Learning event sign up to receive email updates below:

October 2021

‘Global champion’ Prof. Mala Rao awarded prestigious Alwyn Smith Prize for outstanding service to public health

Prof. Mala Rao

Her tireless work spanning public health practice, policy and research was recognised in October 2021 with the Faculty of Public Health (FPH) award which recognises her exceptional contribution to improving the public’s health through research.

Professor Mala Rao OBE, NIHR ARC NWL Ethnicity and Health Theme Lead and Senior Clinical Fellow, Imperial College, is a well-known and highly regarded public health doctor and co-founder of the NHS Race and Health Observatory.

Her research and advisory roles cover many areas including race equality, workforce development, strengthening health systems and environmental health. Mala is known for high impact research projects that inform her prominent sector voice and position her as an influential leader and role model to many.

Relentless Commitment

Professor Maggie Rae, President FPH said:

“Your research on policy issues has influenced health strategies benefitting millions of people in the UK and globally, and your commitment to social justice and race equality has been relentless.”

She continued:

“You are recognised globally as a champion of climate change action and sustainable development. You are a highly esteemed leader in public health and have inspired a generation of young professionals through your innovative working, passion, dedication and friendship.”

Leading the conversation

In a highly distinguished career Mala has lead research on global health, climate change and social equality gaining international recognition for her pioneering work. She has used her influence to raise the awareness of climate change on health, the importance of universal access to health care and sanitation and most recently highlighted the rise of eco anxiety in young people.

Mala said:

“I am deeply honoured, and humbled, to receive this award from the Faculty, as probably the first ethnic minority person to do so, and very much hope others will follow me. Public health achievements are impossible without the inspiration, support, friendship and allyship of others. To those, who are reflected in this recognition, I say a heartfelt thank you.”

An ‘outstanding contribution’

The Alwyn Smith Prize is a discretionary prize awarded annually "to the FPH member or fellow judged to have made the most outstanding contribution to the health of the public by either research or practice in community medicine (public health medicine)”. The prizes acts as a platform to promote and celebrate the contributions and achievements of outstanding individuals.

Congratulations flooded in on social media with Mala being described as a “trailblazer”, “inspiration” and her work having “enhanced so many careers” while “tacking inequalities and discrimination pushing for a fairer system.”

September 2021

Your Path in Research: Exploring a NIHR ARC NWL Supported PhD Studentship

Kanika Dharmayat

We support people from all backgrounds to take an interest and engage with our applied health research and we enable researchers to take the next step in their research career. We do this because research is richer and more meaningful for having more people involved.

As part of the NIHR Your Path in Research campaign we spoke to Kanika Dharmayat, who is starting the second year of an NIHR ARC Northwest London supported PhD on familial hypercholesterolemia (FH), to see how she has benefitted from the opportunity.

FH is one of the most common genetic conditions that causes individuals to have elevated levels of cholesterol from birth and are therefore at increased risk of premature atherosclerotic cardiovascular events. Kanika is using her PhD to investigate this further and look at how to improve detection, it’s thought that fewer than 5% of the potential 25-35 million with FH have been detected.

Evidence based practice


Kanika describes what it was about the PhD that appealed to her:

“The NIHR ARCs specifically focus on applied research which is an area I wanted to develop my skills and experience in. There was the opportunity to do a lot of applied research within the FH community which was really appealing.”

Kanika doesn’t see her research career pathway as conventional because her studies have been interspersed with experiences working within hospital trusts. She has also completed internships abroad with UNICEF and others in countries such as Ghana and India. While carrying out this ‘hands on’ practical work she realised the value and importance of evidence based practice and how research informs this.

She describes her motivation to get further involved:

“In order to drive evidence-based work, you need to conduct research and that’s where my interest and skillset are, that’s what I enjoy. What motivates me is being part of research that can inform guidelines and policies at the local, national and international levelsto address public health challenges.”


'A new perspective'

Despite the impact of COVID pandemic Kanika and her fellow PhD students have valued the support and opportunities the ARC supported PhD offers. She carried out training in Health Economics, an area she wouldn’t have previously considered, engaged with collaborative learning events and taken the opportunity to interact with patients and members of the public through Patient and Public Involvement (PPI).

“We get an insight from that perspective, of how our research is going to shape the front line and impact communities and individuals. Previously with my other research activities I didn’t get to do that so much, I was sitting at a desk and analysing numbers. We were never able to see the impact and have that direct conversation.”


Follow your interests

Kanika’s advice to anyone considering getting involved in research is to explore what’s out there and follow what interests them. She found the NIHR website a great resource for finding opportunities and experts to speak to about taking the next step. As she says: “There are endless opportunities for researchers at all stages.”


More:



August 2021

Research from NIHR ARC Northwest London showcased in nationally significant applied health and care research publication

The legacy of the CLAHRCs 2014-19 - 5 years of NIHR-funded applied health research

Two case studies showcasing research from NIHR ARC NWL have been featured in a newly released flagship document that demonstrates the impact of National Institute for Health Research (NIHR) funded applied research to transform health and care across England.

The Accident and emergency tracker (page 16) and My Medication Passport (MMP) (page 20) are both featured as examples of how applied health research from the CLAHRC partnerships programme made real world impact.

Accident and emergency tracker – Emergency care and acute illness theme

The project, aims to help people working in and experiencing the urgent and emergency care system to make better decisions based on the published A&E data. The team used Statistical Process Control (SPC) charts, as well as developing a web application, to provide SPC analysis of A&E data at national, regional and provider level. The application automates analysis of the volume of attendances and performance against the 4-hour standard for every trust in England, and every acute hospital in Scotland, and updates itself when new data is released.

My Medication Passport (MMP) - Management of long term conditions theme

My Medication Passport (MMP) is a passport-sized booklet designed by patients to help them manage their medicines and promote effective and up-to-date communication between patients and service providers. It is updated by the patient or carer and accompanies them throughout their patient journey. The booklet was launched in 2014 for general use and since then approximately 260,000 have been ordered across the UK.

“My Medication Passport (MMP) is a patient led solution, for patients who use many medicines. MMP records the medicines that a patient is using in a small hand held document, enabling the quick transfer of information from patient to health care professionals, which is particular useful in a medical emergency or when the patient is experience high levels of pain. Since 2014 over 260,000 MMP’s have been distributed worldwide, with patients at the forefront in advocating their use. Sometimes the simplest solutions are the best”

Ganesh Sathyamoorthy, Assistant Director for Partnerships and Business Development

Collection of case studies


The publication, ‘The legacy of the CLAHRCs 2014-19 - 5 years of NIHR-funded applied health research’ compiles key research projects from the NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRCs). Drawing together case studies from priority themes, the document demonstrates how the CLAHRCs conducted innovative research leading to improved outcomes for patients, better and more cost-effective services while challenging health inequalities.

“The NIHR CLAHRCs increased the country’s applied health and care research capacity and capability, making this a key strength of the NIHR. These case studies are a fantastic demonstration of the CLAHRCs’ impact on improving services and outcomes for patients and the public, across a wide range of priority areas. Our Applied Research Collaborations continue to build on this legacy.”

Dr Louise Wood CBE, co-lead NIHR, Director of Science, Research and Evidence at the Department of Health and Social Care


Read online

> Read the full document online

Since October 2019, the NIHR Applied Research Collaborations (ARCs) have continued the work of the CLAHRCs. They deliver research relevant to the needs of their local populations, while contributing to nationally identified research priority areas.

July 2021

What award-winning co-production looks like and how we go further

Sandra Jayacodi

Sandra Jayacodi is a public contributor and Chair of the NIHR Imperial Biomedical Research Centre Public Advisory Panel. To mark Co-production Week she discusses her experiences of being a service user on an award-winning co-produced research project.

As someone who has previously experienced mental health problems, taking part in a co-produced research project on the relationship between mental and physical ill-health was a transformative experience. For two years I and others contributed our lived experience to an award-winning project.

Co-production means involving people who can benefit from research in shaping it from the very outset, as equal partners. It leads to higher quality, more impactful research, better focused on the needs of those it should ultimately benefit. The research I took part in reflected these principles, so it’s worth looking back on what that project got right.

What co-production done well looks like

I was one of three service users co-producing the SHINE project. The project aimed to improve the physical healthcare assessment offered to people admitted to the mental health wards at St Charles Hospital in Ladbroke Grove by collaborating with service users. Before I became a member of the project team, I knew very little about co-production or Patient and Public Involvement and Engagement (PPIE) but I did know that I wanted to share my lived experience of mental ill health to improve things for others.

I was pleasantly surprised by the way that I was included in all discussions about the project. When I made suggestions, they were taken up, or responded to. It wasn’t just my own experience that I drew upon - I recommended a resource from the British Heart Foundation that could be integrated in the project instead of the team creating one from scratch. There was a definite feedback loop between my contribution and changes to the projects.

The researchers clearly wanted to involve the service users. Whenever I went to a meeting I knew they would have answers for me! And when others were less confident about speaking in meetings, the researchers would make sure to get a contribution from them individually afterwards. Over time the team became like a family.

There are always limits to the influence you can have over any research project. For example, I was keen for clinicians working on the project to have discussions with patients about the side effects of drugs they are prescribed. For whatever reason, it wasn’t possible to make this a part of the project.

But overall, to be in the wards, talking to the patients, working with the staff, integrated in all stages of the project - that felt special. I’m proud that the SHINE project resulted in a patient-held physical healthcare record for people on mental health wards.

Can we take co-production further?

It’s definitely the case that proper co-production isn’t easy or always appropriate for every research project. At the same time, I feel that in allowing co-production to be defined loosely, we don’t do justice to what it should be. Being invited somewhere in the middle or at the end of a project to consult on a plain English summary or a leaflet isn’t true co-production in my view.

The NIHR Centre for Engagement and Dissemination has an important role to play in moving co-production forwards. Its resources are a good guide for researchers thinking about how they can integrate co-production into research and include many other examples of co-production working in practice.

We still have a way to go to make co-production central to health research. Let’s include more people with lived experience in the whole research process- there are many more like me out there.

The Shine project was a collaboration between the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North West London, Central and North West London NHS Foundation Trust and the Health Foundation.

Published 06/07/2021 on www.nihr.ac.uk/blog/what-award-winning-co-production-looks-like-and-how-we-go-further/28066

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.

June 2021

What happened to English NHS hospital activity during the COVID-19 pandemic?

Hospital external
Outside of hospital
Ambulances at hospital

The COVID-19 pandemic has had profound effects on healthcare systems around the world, including the UK National Health Service (NHS).

As a result of a reorganisation of services and changes in the care needs and care-seeking behaviour of patients, the use of hospitals in England has changed drastically. However, exactly how much and what type of care has taken place, and the extent to which these patterns vary across different groups of individuals, has not yet been comprehensively documented. Better evidence on this is required to address backlogs in care, and to understand to which groups resources should be particularly targeted after the acute phase of the pandemic is over.

In this briefing note, we use administrative hospital data from across the NHS in England to describe how the use of inpatient (elective and emergency) and outpatient hospital care in 2020 compared with that in the previous year. We first show how overall levels of care changed in the period after the start of the pandemic in March until the end of December 2020 and then examine how changes in activity varied across regions and clinical specialties. We finally examine how these patterns differ across patient age, ethnicity and local area deprivation.

Our findings suggest a complex response to the pandemic driven by large drops in supply for non-COVID services and demand-side responses to the pandemic. They also underline the need to increase available resources to address care backlogs and to direct resources to the people, local areas and groups that have been most affected.

Some key findings were:

Between March and December 2020, there were 2.9 million (34.4%) fewer elective (planned) inpatient admissions, 1.2 million (21.4%) fewer non-COVID emergency inpatient admissions, and 17.1 million (21.8%) fewer outpatient appointments compared with the same period in 2019.

There was a sharp reduction in hospital activity in March 2020. Although emergency inpatient admissions had almost returned to their 2019 level by August, elective and outpatient volumes remained substantially below their 2019 levels for the rest of 2020. Emergency inpatient admissions began to decline again (relative to 2019) in September.

May 2021

Assessing the long-term safety and efficacy of COVID-19 vaccines

Person receiving a vaccination
Prof. Azeem Majeed

Professor Azeem Majeed

NIHR ARC NWL Director

Head of the Department of Primary Care & Public Health at Imperial College London

Twitter: @Azeem_Majeed

Assessing the long-term safety and efficacy of COVID-19 vaccines - Azeem Majeed, Marisa Papaluca, Mariam Molokhia, 2021

Vaccines for COVID-19 were eagerly awaited, and their rapid development, testing, approval and implementation are a tremendous achievement by all: scientists, pharmaceutical companies, drugs regulators, politicians and healthcare professionals; and by the patients who have received them. But because these vaccines are new, we lack long-term data on their safety and efficacy.

In surveys of people who define themselves as ‘vaccine hesitant’, this lack of long-term data is one of the main reasons given for their beliefs. Hence, providing this information is a public health priority and could help reassure vaccine-hesitant people that receiving a COVID-19 vaccine is the right choice for them. Emerging data from the UK and elsewhere are confirming the benefits of COVID-19 vaccines and this is one of the factors that is leading to a reduction in vaccine hesitancy in the UK population.

The news that two UK recipients of the COVID-19 Pfizer-BioNTech mRNA vaccine suffered severe allergic reactions on the first day of its rollout illustrates the need for accurate recording of any adverse events following administration of COVID-19 vaccines. These allergic reactions were unexpected and led to procedures being put in place to prevent further episodes of anaphylaxis after vaccine administration. Further concerns were raised after a high death rate was reported in elderly vaccine recipients in Norway. More recently, an association has been reported between the AstraZeneca COVID-19 vaccine and clotting disorders, which led to some countries restricting the use of the vaccine in younger people.

NIHR ARC NWL are working to tackle concerns about COVID-19 vaccines, especially within the BAME community. If you have any articles to support this the reduction of vaccine hesitancy in the community, please feel free to share with us.