I am a member of the Population Health Sciences Institute (NUPHSI) and work across the Ageing and Geoscience and Innovation, Methodology and Application themes. My research also covers several Newcastle University Centres of Research Excellence (NUCoRE):
Centre for Ageing and Inequality
Centre for data
Centre for Healthier Lives
This month, the PHSI EDI committee has been raising awareness of the committee with a stand at the PHSI Spring Celebration Event.
Thanks to all PHSI colleagues who stopped by on April 18th to say hello, to find out more about what we do and how we can help you, or to play one of our EDI games!
Special mention is given to Nicola, Richard, Annette, Ruth, Abisola, and Fiona for running and to Jill, Paul, and Sue for helping to set up the stand.
We had a great turn out and have collected some useful information to inform our onward planning to help develop the committee moving forward.
We will be reflecting on the responses from staff at this event in our next committee meeting and will use any data gained to inform our workstreams moving forward.
If you missed the event or were unable to provide any suggestions on the day. Don’t worry, we are still collating information using an online ‘suggestions box’ (for link, please see the latest PHSI newsletter), so there is still plenty of time to drop the committee a line.
In particular, we are still keen to hear from colleagues who have an interest in:
Getting involved with our blogs.
PGRs who would like to join the committee.
Colleagues with an interest in inputting into the Disability Working Group.
Any other suggestions for PHSI EDI focus this coming year.
Just a few things to recap:
The Committee’s Aims:
Actively promote dignity, respect, inclusivity and equal treatment among staff, students, and other stakeholders.
Develop strategies to promote EDI in PHSI, by engaging staff and students in the process.
Promote new policies, procedures and best practice relating to equality and diversity in all aspects of our activities encompassing all protected characteristics.
Help shape and deliver PHSI EDI culture.
Respond to changing circumstances in PHSI, the wider faculty, and university.
Raise the profile and priority of EDI within PHSI.
What we do:
Bi-monthly EDI updates in the PHSI newsletter – includes links to blogs and upcoming EDI events.
Blogs (linked to themes in Newcastle University’s Inclusion Calendar).
Book Club.
Organise events e.g. online keynote lecture ‘Holocaust Memorial Day & LGBT+ History Month from 2022) – you can still watch the recap online here: https://www.youtube.com/watch?v=CCJQ9mbvM5Q
Period Dignity Project.
Decolonising Research Project.
Disability Awareness Group.
EDI representation on PHSI executive & FMS EDI Committee.
Embed EDI in PHSI strategic plan.
Leadership and working group roles for the FMS Equality Project.
Contribute evidence to the Athena Swan application.
Returner’s Support Program champion.
How we can help you:
Support PHSI colleagues with an interest in EDI – especially those who wish to join the committee (including PGRs).
Promote PHSI colleague’s research by linking this work to Newcastle University’s Inclusion Calendar and EDI themes.
Develop your suggestions for EDI focuses that you would like to see the Committee focus on moving forward.
Ran into an EDI issue? Please contact us to see how we can help you.
World Cancer Day, which occurs every year on 4th February, is an international initiative intended to raise awareness of cancer and take action to improve the prevention, detection, and treatment of this condition. In this article, we provide a brief outline of cancer and then include three separate cancer-related blogs by Dr. Fiona Malcomson (Senior Research Associate), Ruth Norris (PhD Student & Research Associate) and Dr. Christina Dobson (Senior Research Associate) on some of the promising cancer-related research going on within the Newcastle University Population Health Sciences Institute.
Cancer – a term which refers to a collection of diseases affecting every part of the body – is one of the leading causes of death worldwide, accounting for around 1 in every 6 deaths. Common types of cancer include breast, lung, colon, rectal, prostate, and liver. This condition occurs due to a transformation of normal, healthy cells into tumour cells via a series of processes that progress from a pre-cancerous lesion to a malignant tumour. These changes occur because of an interaction between an individual’s genetics and external agents (or carcinogens) which can increase cancer risk.
It is estimated that up to half of all cancers could be prevented by avoiding cancer risk factors and maintaining a healthy lifestyle (more on this later in the blog from Dr. Fiona Malcomson). Some of the things that we can do to help reduce the risk of developing cancer are shown in the image below.
Cancer doesn’t affect everyone in the same way, and we know that certain groups of society may be less likely to receive a prompt diagnosis for cancer or, after diagnosis, obtain the treatment that they need (more on this in the blog by Ruth Norris below). There is clear evidence for inequalities in cancer care between patients of different ages, sexes and ethnicities – and, as discussed in more detail by Dr. Christina Dobson below, by geographical location too. Raising awareness of these issues and exploring potential solutions is one important way in which we can try to ensure equality for all individuals whose lives have been impacted by cancer.
Blog 1: Dr. Fiona Malcomson, Senior Research Associate
Lifestyle factors including body fatness, diet and exercise affect one’s risk of getting cancer and may also be linked to chances of surviving after cancer diagnosis. Approximately 40% of cancers in the UK could be prevented if everyone adopted a healthy lifestyle. The World Cancer Research Fund (WCRF) and American Institute for Cancer Research (AICR) – two leading bodies focused on understanding, preventing, and treating cancer – published 10 lifestyle-based Cancer Prevention Recommendations including maintaining a
healthy body weight, being physically active, and eating little red and processed meats.
In the CALIPER UK Study, we are using a large UK dataset (UK Biobank) to explore whether greater adherence to these Cancer Prevention Recommendations is associated with a lower risk of developing cancer. Later down the line, we will also be investigating whether better adherence affects chances of survival in people who have been diagnosed with cancer.
The UK Biobank is an invaluable resource which has collected a wealth of data on over half a million participants, including socio-demographics (e.g., age, sex, ethnicity), lifestyle factors (e.g., diet, levels of physical activity), and collects data on health-related outcomes, including cancer diagnoses, during follow-up.
We will first assess associations between a standardised score (used to measure adherence to the Cancer Prevention Recommendations) and the risk of all cancers combined and for cancers for which there is strong evidence for links with lifestyle factors, such as breast and bowel cancers. Through some methods-based work, we will see whether we can improve assessment of adherence to these recommendations by creating different score versions, and explore whether this should be tailored for specific cancers. For example, a large amount of evidence exists for links between eating too little dietary fibre or eating too much red and processed meat and bowel cancer. So, perhaps a score which gives a greater weighting to intakes of these foods will work better to predict bowel cancer risk.
The findings from this study could help to guide lifestyle recommendations and public health policies for the UK population, and for cancer survivors, to reduce the risk of cancer and improve length, and quality, of life. We are also investigating sociodemographic differences in adherence to these Recommendations, as both cancer incidence and survival are socio-economically patterned. Our findings may provide on which specific recommendations for cancer prevention could be tailored, or targeted towards, those in different socioeconomic groups in the UK.
Blog 2: Ruth Norris, PhD Student & Research Assistant
Equality – it’s not the first word that comes to mind when thinking about (or facing) a cancer diagnosis. Yet fair treatment and opportunity for all in cancer care is unfortunately not guaranteed. Rather, for many patients, barriers such as age, gender, income, ethnicity, education, and where you live negatively impact experiences across the care pathway from diagnosis to treatment and through to end-of-life care. This so called “cancer care gap” is ingrained and affects everyone – not just those in the most disadvantaged groups. Fortunately, the Union for International Cancer Control’s 2022-2024 World Cancer Day campaign (Close the Care Gap) aims to raise awareness and advocate for change, and as someone with an interest in cancer inequities – this move is very much welcomed.
My research has focused on determining whether socio-economic status (SES) acts as a barrier to novel cancer treatment. We already know that a low SES is associated with reduced access to conventional cancer treatments (surgery, chemotherapy, and radiotherapy). However, the way we treat cancer is also changing – we now have increasing use of novel, targeted treatments tailored to individual tumour genetics and immunotherapies which use the immune system to attack the cancer. What we don’t know is whether access to these newer cancer treatments is fair.
Our initial work, reviewing studies addressing this question suggested that a low SES was associated with reduced access to novel treatments. Similar outcomes were found when we analysed real world cancer registry data from England linked with a new drug database – the Systemic Anti-Cancer Therapy (SACT) dataset:
Low SES reduces likelihood of new anti-cancer therapy receipt – even in a publicly funded healthcare system (English NHS).
Low SES is a barrier to new treatment access across a range of cancers.
In non-small cell lung cancer, patients living in the most deprived areas were 46% less likely to receive a novel therapy than those patients in the least deprived areas (Figure 2).
Figure 2: Likelihood (odds ratio) of novel anti-cancer therapy receipt by deprivation in non-small cell lung cancers diagnosed in England between 2012-2017. Multivariable model adjusted for: sex, age, diagnosis year, ethnicity, rural/urban indicator, stage, comorbidities & histology.
Moving forward, we still have some way to go to make cancer treatments equitable and to remove socio-economic barriers. First steps start with understanding why these barriers persist, followed by action to address imbalances. As one in two people will face a cancer diagnosis in their lifetimes, World Cancer Day 2023 serves as a reminder to all of us that “our time to act is now” if efforts to #CloseTheCareGap are to be successful.
For more information and to get involved, follow the campaign.
Blog 3: Dr. Christina Dobson, Senior Research Associate
World Cancer Day is a great opportunity to take stock and reflect on the diverse range of cancer research going on within the institute, and the shared- vision of reducing cancer inequalities and improving outcomes for patients. For instance, the COLO-SPEED research programme is galvanising patients, clinicians and academics to deliver world-leading endoscopy research into how we can prevent, diagnose and treat bowel cancer regionally (where we experience high health inequalities and deprivation), and nationally.
My work also focuses on inequalities and place, in relation to the experiences of rural patients. Rural cancer inequalities have been evidenced now for decades, but little research has been undertaken to understand the causes of this. Our recently published study identified barriers that rural patients face when it comes to seeking help for symptoms of possible bowel cancer. This work, funded by Yorkshire Cancer Research, showed that rural populations face specific barriers to early diagnosis, including:
– The financial and logistical constraints that people who are self-employed, particularly in seasonal industries (such as farming and tourism), face which can prevent them from seeking help about their symptoms.
– How rural living requires individuals to be self-sufficient, and stoic, qualities which can be detrimental when it comes to consulting GPs about symptoms early.
– And the importance of continuity of care, and a good relationship between GPs and patients, to encourage and empower patients to feel like they can consult.
Examining barriers to early diagnosis and survival for different patient groups, across the diagnostic pathway, is vital. Understanding the obstacles and challenges that different groups face enables us to go on to develop and tailor meaningful interventions that are acceptable to communities and can have a tangible impact on their diagnostic experiences, quality of life, and life expectancy.
Where can I learn more about cancer?
World Cancer Research Fund International:
An excellent resource for those interested in learning more about reducing cancer risk.
World Health Organisation:
The World Health Organisation Cancer fact sheet provides some great background information about the prevalence of cancer, its causes and treatments.
Cancer Research UK:
Check out the Cancer Research UK Cancer Research UK website for the latest developments in cancer research.
By Dr Abisola Balogun-Katung & PhD student Ania Barros Mendes Couchinho
This months PHSI EDI BOOK CLUB Abisola and Ania have put together a fantastic collection of books on Black History Month and support black businesses and booksellers.
Black and British provide its reader with a thorough and vital history of black Britain. It provides the reader with an exposé of the lingering relationship between the people of Africa, the Caribbean and the British Isles, this book has rightfully been described as a “thrilling tale of excavation” and a ‘testimony to the rich experiences of Black people of Britain’. It is also available as a short, essential history for readers aged 12+.
A comprehensive and important history of black Britain
The Sunday Times
The Good Immigrant
Nikesh Shukla
The Good Immigrant brings together 21 thrilling Black, Asian and minority ethnic voices emerging in Britain. With a collection of poignant, challenging, sometimes angry, heartbreaking and humorous essays, it explores why immigrants come to the UK, why they stay and what it means to be ‘other’ in a foreign country miles away from home.
The stories are sometimes funny, sometimes brutal, always honest … if I could, I’d push a copy of this through the letter box of every front door in Britain.
The Independent
Tribes
David Lammy
Tribes explores the benign and malignant effects of our need to belong in society. This genetically programmed and socially acquired need to belong manifests in positive ways through collaboratively achieving great successes, which individually cannot be achieved. On the other hand, this need can manifest in negative ways, particularly with globalisation and digitisation leading to new, more malicious forms of tribalism. David Lammy provides the reader with a fascinating and perceptive socio-political analysis of Britain and what it means to be British.
Lammy writes with nuance and sensitivity and accepts the lack of easy answers. But his core message is simple. We must cooperate more, compromise more, communicate more. Only connect, but offline.
Prospect
What White People Can Do Next
Emma Dabiri
Vital and empowering What White People Can Do Next teaches each of us how to be agents of change in the fight against racism and the establishment of a more just and equitable world. In this affecting and inspiring collection of essays, Emma Dabiri draws on both academic discipline and lived experience to probe the ways many of us are complacent and complicit—and can therefore combat—white supremacy. She outlines the actions we must take, including: Stopping the Denial, Interrogate Whiteness, Abandon Guilt, Redistribute Resources, Realize this s**t is killing you too . . .
To move forward, we must begin to evaluate our prejudices, our social systems, and the ways in which white supremacy harms us all. Illuminating and practical, What White People Can Do Next is essential for everyone who wants to go beyond their current understanding and affect real—and lasting—change.
Concise, sure-footed and complete . . . a battle cry against racism for even the most socially aware . . . Dabiri’s reflections have been a very, very long time coming
Tanya Sweeny ― Irish Independent
In the Wake: On Blackness and Being
Christina Sharpe
This captivating and poetic piece of work unpacks the state and existence of Black beings in modern society. It Considers what binds Black lives together following the journey from slave ships to consciousness or what Sharpe labels ‘The Wake.’ The consciousness and awareness of Blackness that writers such as Shilliam (2015) and Adichie (2017) adopt in their work. Sharpe reinforces her idea of The Wake by defining it as a Black awareness of ‘skewed life chances, limited access to health and education, premature death, incarceration, impoverishment’ (Sharpe, 2016). This Black consciousness is what Sharpe aims to academically theorize and encapsulate in this text. Its four chapters, The Wake, The Ship, The Hold and The Weather, it cleverly addresses themes of postcolonialism, decoloniality and feminism.
Christina Sharpe’s deep engagement with the archive of Black knowledge production across theory, fiction, poetry and other intellectual endeavours offers an avalanche of new insights on how to think about anti-Blackness as a significant and important structuring element of the modern scene.
Cutting across theoretical genres, In the Wake will generate important intellectual debates and maybe even movements in Black studies, cultural studies, feminist studies and beyond. This is where cultural studies should have gone a long time ago
Rinaldo Walcott – author of Black Like Who?: Writing Black Canada
Things Fall Apart
Chinua Achebe
This emotive and comforting novel offers a Pan-African narrative completely free of Eurocentrism. The story of Okonkwo, a man of the Ibo tribe in Nigeria, tells a story of a way of life many modern Africans continue to mourn. It brings to light both the positive experiences of African life before colonisation and mirrors the fall of African customs and traditions towards the end of the 19th century.
The writer in whose company the prison walls fell down
Nelson Mandela
His courage and generosity are made manifest in the work
Toni Morrison
Small Island
Andrea Levy
A moving novel that tells the stories of a Black woman, a Black man, a white woman and a white man and the way in which their paths overlap unexpectedly. Set at the time of the Windrush era, Small Island tells the story of the Windrush generation. Levy taps into the unique racialised experiences of each individual, the gender roles set by both racial backgrounds and the socio-political experiences of all four individuals as England recovers from the 2nd World War.
Gives us a new urgent take on our past.
Vogue
Black Skin, White Mask
Franz Fanon
This timeless historical critique rewrites the history of colonialism from a lens that describes the transition of Africa towards Eurocentrism. Fanon discusses Africa’s heart-breaking psychological, physical, and cultural transformation that provides historical context for today’s socio-political landscape. A must-read for all those interested in Decoloniality, Black and postcolonial studies.
This century’s most compelling theorist of racism and colonialism
Alzheimer’s disease – the most common form of dementia – has a huge economic and social burden, impacting the lives of millions of individuals and their families. Although there is currently no cure for this condition, ongoing research is continually improving our understanding of this condition and identifying ways to help mitigate risk. With World Alzheimer’s Day just around the corner (21st of September), we took the opportunity to interview key researchers in this area within the Newcastle University Population Health Sciences Institute. With insight from early career and more experienced researchers, these interviews provide a great introduction to Alzheimer’s Disease research within our Institute and guide what the future may hold and how people can get involved.
Prof. Dame Louise Robinson – Professor of Primary Care and Ageing; Regius Professor of Ageing
What does World Alzheimer’s day mean to you?
A global opportunity to continue to raise both public and professional awareness about dementia
What is your research area?
My research focuses on dementia care with the key aim of trying to improve the quality of care, and quality of life, for people living with dementia and their families. Recent projects address this area nationally, including the PRIDEM programme (https://research.ncl.ac.uk/pridem/) and international working with collaborators in Lower Middle-Income Countries through an NIHR Global Health Research Group (https://research.ncl.ac.uk/global_health_depec/). This work has been presented to the World Dementia Council and will be included as a case study in the WHO/ADI World Alzheimer Report on Post diagnostic care, due for release in autumn 2022.
How did you get into this sphere?
As a young GP many decades ago, I was distressed by the lack of support available to my patients diagnosed with dementia; compared to people with cancer or other long-term illnesses like diabetes, there was very little available.
How has this area changed since you first became involved?
Unfortunately, not a great deal despite a national Dementia strategy in 2009. Our PRIDEM programme has shown that this is still the case in England, with considerable inequalities in dementia care services which are focused on the first year after diagnosis and are often fragmented and fragile due to a lack of long-term funding commitment.
What are the key challenges?
Ensuring implementation and scale-up of key research findings into practice to make a real difference in people’s lives.
Dr. Andrea Fairley – Lecturer in Nutrition & Dietetics
What does World Alzheimer’s day mean to you?
As a researcher working in dementia prevention, World Alzheimer’s Day is an excellent opportunity to raise awareness and highlight what can be done to reduce our dementia risk. As this condition was historically seen as an inevitable part of the ageing process, it is important that the message of dementia prevention reaches the wider public and that we spread the message of how we can protect our brain health.
What is your research area?
I am a registered dietitian and lecturer in human nutrition and dietetics. I am actively involved in research, being specifically interested in the role of diet in cognitive decline and dementia prevention. I am interested in the design, development and testing of diet and lifestyle interventions to promote behaviour change among at-risk populations, particularly those at greater risk of cognitive decline.
How did you get into this sphere?
I became interested in public health nutrition through my work as a dietitian. While studying for a PhD at Queen’s University Belfast, I became fascinated by the field of diet and dementia prevention.
How has this area changed since you first became involved?
When I started my PhD and began researching this area, there had been an array of observational evidence conducted within the field of diet and dementia prevention and a few landmark trials. At that time (2015), larger multidomain intervention studies focusing on modifiable risk factors such as diet, lifestyle and cognitive strategies were in the pipeline. Since then, we have seen the results of these studies, notably the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) trial. This multidomain intervention (diet, exercise, cognitive training, vascular risk monitoring) is applied in older people (60-77 years) at higher risk for dementia and has produced significant cognitive benefits after 2 years. This landmark study has inspired further research in this field to explore how these interventions are tailored among at-risk interventions – an area I am very much interested in!
What are the key challenges?
The research literature has shown significant associations between key nutrients and dietary patterns and reduced risk of cognitive decline and AD. Certainly, individual foods, or nutritional components such as Omega 3 fatty acids, or B vitamins, may be associated with reducing dementia risk. They may have a specific role to play in counteracting biological processes in the body that can contribute to cognitive decline. But as consumers, we don’t eat just one type of food. So, it is important to look at the diet as a whole – the nutrients in different foods can interact, and this combination may bring additional health benefits. There have been some intervention studies to test the effect of dietary patterns in dementia prevention, such as the Mediterranean diet, and these show promising results. However, we need to do more intervention research! Researchers are working to better understand how specific dietary components can influence cognition, how these foods affect brain health when consumed together and how to tailor dietary advice to specific countries, cultures and settings. When we think about changing our diets and lifestyles, we know that “one size does not necessarily fit all”. It is important to understand the food cultures and available resources of different countries to provide tailored, needs-specific dietary advice and support.
If you could give yourself one piece of advice as an ECR, what would that be?
Network, network, network! It can be so daunting as an ECR to put yourself out there but is so important to build connections and network, as you never know where it might lead. Having a LinkedIn or Twitter profile can be useful to get yourself noticed!
What is the future of dementia research?
I think the future is bright for dementia prevention research. This research area is getting a lot of attention, both through research funding and public engagement. Recently, we have seen huge advancements in dementia prevention by identifying modifiable risk factors that can be targeted across the life course. I am excited to see what future research in this area will bring!
How can people get involved?
Read more about dementia prevention and what you can do to promote brain health. Charities, such as The Alzheimer’s Society, have some useful resources. You can also get involved in dementia-related research – Join Dementia Research is a service providing new opportunities for people to play their part in beating dementia, connecting researchers with people who want to participate in studies. It is free to sign up and you will be directly matched to a study that meets your criteria.
Dr Connor Richardson – Post-Doctoral Research Associate
What is your research area?
My main area of research is in the Epidemiology of dementia and cognitive impairment. I work on large population-based cohorts to investigate the risks of dementia in the population over time with the Cognitive Function and Ageing Studies (CFAS). My most recent work involves using newer machine learning techniques to investigate dementia neuropathology.
How did you get into this sphere?
I was interested in dementia from the final year of my undergraduate biomedical sciences degree, my favourite modules being Biology of Ageing and Neuroscience; however, I did not enjoy lab-based science.
During my MSc in Public Health Research, I knew I wanted my thesis to be on dementia and quantitative methods. I was supervised by Katie Brittan and Blossom Stephan, looking at cognitive reserve and dementia. I enjoyed the project, so went on to work with Bloss, Louise Robinson and Fiona Matthews on my PhD looking at Mild Cognitive Impairment (MCI). Since then, I have been the CFAS statistician as a post-doc with Fiona Matthews.
How has this area changed since you first became involved?
Although I have worked in the field for a relatively short time I have noticed several changes. As I was beginning my PhD, the DSM version V was being published, which completely re-classified the diagnosis of dementia and MCI into Major and Minor Neurocognitive disorder, which remains controversial.
Similarly, I just attended the Alzheimer’s Association, where a debate was being held to redefine Alzheimer’s diseases based on biomarkers without clinical symptoms.
Closer to my own work, there is currently a huge expansion of data science and machine learning moving into the space of traditional epidemiology and statistical modelling.
Overall I think dementia research is quite an exciting area of research as things can change pretty quickly, and changes can often be pretty controversial.
What are the key challenges?
It’s a relatively small field in comparison to other medical research. The key challenges for me are probably similar to most researchers at my level, balancing career development and publishing and gaining experience with day-to-day work. I have found that when at events like conferences, the dementia research network is extremely friendly!
If you could give yourself one piece of advice as an ECR, what would that be?
I am guilty of putting too much pressure on myself to do too many things at once. I am often reminded to take a step back, take a breath and think about one thing at a time. I’ve recently realised the importance of setting work aside for a short time and reflecting on where I want to be and how to get there.
What is the future of dementia research?
I think new technology is moving the field very quickly; for example, there is huge momentum behind using imaging from MRI and PET scanning combined with AI/ machine learning to diagnose dementia earlier and earlier, if this is necessarily a good thing seems to be a hot debate at the moment. Unfortunately, this seems to limit the attention being paid to modifiable population risk.
There is also more emphasis on researching dementia among low and middle-income countries and being much more inclusive of minority and underrepresented groups in dementia research.
How can people get involved?
I think the Alzheimer’s society does a huge amount of engaging people in dementia research; they have massive amounts of information and training to become dementia friends so people can learn what living with dementia means.
Highlights from Alzheimer’s Association International Conference 2022 & underrepresentation in dementia research
While attending the Alzheimer’s Association conference, I was a guest speaker on the Dementia Researcher podcast. Among the two other guests, we all had one major highlight, a fantastic session on “Navigating the crisis of underrepresentation in ADRD research: New directions and best practices”. An eye-opening session focussed on the unique challenges facing memorised groups living with dementia, failures in research of including minority groups in research and fresh ideas to address underrepresentation.
Right to left: Dr Bhargav Teja Nallapu, Dept. of Neurology, Albert Einstein College of Medicine, Bronx, New York; Dr Isabel Castanho, Beth Israel Deaconess Medical Center (BIDMC), Harvard Medical School; Dr Annalise Rahman-Filipiak, Department of Psychiatry, University of Michigan Medical School & Michigan Alzheimer’s Disease Research Center, Dr Connor Richardson, Newcastle University Population Health Sciences Institute.
Links to the podcast, information on Dementia Researcher, session descriptions and speakers are included below.
Across a host of Western countries, persons from minority groups are increasingly recognized to be severely and persistently underrepresented in clinical research on Alzheimer’s disease and related disorders (ADRD). Early investigations into this problem consisted mainly of small, descriptive studies and bespoke interventions focused on participant-related barriers to research enrolment (like mistrust), often among persons of colour. This Featured Research Session will highlight recent conceptual and methodological advances in the field of recruitment, engagement, and retention (RER) science, present new findings from research being conducted in various regions of the United States, and call on ADRD investigators to action in identifying concrete ways to intervene amidst the current crisis of underrepresentation in clinical research. The first two presentations will discuss ongoing, transdisciplinary efforts to rigorously characterize historical and current issues impacting research participation across a range of marginalized and minority communities. The following three presentations will feature innovative approaches to increasing ADRD research participation within specific underrepresented populations. The final presentation will provide a rationale for expanding the concept of research inequities beyond biological disparities and systemic inequities, incorporating researcher-related barriers to research enrolment.
Session Presenters:
Kylie M Smith (Emory University, GA, USA) – Incorporating history into disparities research: A model for interdisciplinary collaboration and trust building
Nicole Taikeff (CARE Research Center Massachusetts General Hospital, MA, USA) – Early norming data for engagement and recruitment of diverse populations into ADRD research
Jennifer H Lingler (University of Pittsburgh Alzheimer’s Disease Research Center (ADRC), PA, USA) – Mechanisms by which culturally-informed narratives may promote ADRD research enrollment among African American adults
Jason D. Flatt (University of Nevada Las Vegas, NV, USA) – Promoting Inclusion of Sexual and Gender Minority Individuals in Aging and Alzheimer’s Disease and Related Dementias Research
Krystal R. Kittle (University of Nevada Las Vegas, NV, USA) – Caregiving Experiences and Health of LGBTQ+ Caregivers: Results from the Equality in Caregiving Study
Jonathan D. Jackson (Massachusetts General Hospital, Harvard Medical School, MA, USA) – A Methodological Framework for Investigating Diversity in Clinical Research
By Connor Richardson with Recommendations from the Lit and Phil.
Thank you for popping into the book club! Finding good recommendations around elder abuse has proved quite difficult! However, I figure as part of elder abuse day we should be celebrating ageing and older people. So I hope you enjoy these books in that sprirt.
Con
Happy Old Me: How to Live A Long Life, and Really Enjoy It
Hunter Davies | Memoir
On 8th February 2016, Margaret Forster lost her life to cancer of the spine. The days that followed for her husband, Hunter Davies, were carried out on autopilot: arrangements to be made, family and friends to be contacted. But how do you cope after you have lost your loved one? How do you carry on?
Ken Loach might have turned all this into a powerful social film, but the avuncular Davies sprinkles in so many cheery anecdotes that the book bounces along enjoyably
Sunday Times
As Hunter navigates what it means to be alone again after 55 years of marriage, coping with bereavement and being elderly (he still doesn’t believe he is), he shares his wisdom and lessons he has learnt living alone again. Revealing his emotional journey over the course of one year, as well as the often ignored practical implications of becoming widowed, he learns that, ultimately, bricks and mortar may change but the memories will remain.
Part memoir, part self-help, Happy Old Me is a fitting, heart-felt tribute to the love of his life and a surprisingly amusing and informative book about an age, and stage in life, which we might all reach someday. The third book in Hunter Davies’ much-loved memoir series, which includes The Co-Op’s Got Bananas and A Life in the Day.
You’re looking well: the surprising nature of getting old
Lewis Wolpert | Non-fiction
We now live longer today than at any time in history. In the UK, more people are aged over sixty-five than under sixteen and by 2050, over a third of the developed world will be over sixty. How should we deal with this phenomenon? What are the scientific reasons for ageing? And can – or should – we prevent it?
Lewis Wolpert, distinguished biologist and octogenarian, explores the scientific background and the implications of our ageing population. In this engaging investigation, he tackles every aspect of the subject from ageism to euthanasia to anti-ageing cream and, through it all, tries to better understand his own ageing. Witty, frank and often inspiring, Lewis Wolpert is the perfect guide to ‘looking very well’.
Gangsta Granny
David Walliams | Children
Another hilarious and moving novel from David Walliams, number one bestseller and fastest growing children s author in the country.
A story of prejudice and acceptance, funny lists and silly words, this new book has all the hallmarks of David s previous bestsellers.
Our hero Ben is bored beyond belief after he is made to stay at his grandma s house. She s the boringest grandma ever: all she wants to do is to play Scrabble, and eat cabbage soup. But there are two things Ben doesn t know about his grandma.
1) She was once an international jewel thief.
2) All her life, she has been plotting to steal the Crown Jewels, and now she needs Ben s help
Don’t bring me no rocking chair
John Halliday | Poetry
Gathering poems from Shakespeare to the present, Don’t Bring Me No Rocking Chair addresses ageing through the several ages of poetry. Now more than ever, as more of us live for longer, the idea of what it means to age or to grow old engages and concerns people of all ages.
One of the problems of ageing is the language we use to define it and the list of pejoratives associated with it, with attitudes to ageing ranging from ‘fatalism, denial, negative stereotyping and tunnel vision to fantasy’ (Professor Tom Kirkwood, Newcastle University). Poetry can help to give us a fresh language to think about ageing and these poems are chosen to fortify, celebrate, lament, grieve, rage and ridicule. There is not one way to age but neither can any of us truly stop our bodies from ageing.
In our youth-obsessed culture, there is something exquisitely subversive about a book that celebrates old age…As with all anthologies, its delight lies in revisiting old favourites and discovering poems one might not have come across otherwise
Juanita Coulson, The Lady.
Ageing is not a single phenomenon but complex, multiple, perplexing: experienced historically as well as individually. This anthology may not console but it can widen our perspectives, helping us to change what we can change: our attitudes. Joan Bakewell writes in the Foreword: ‘With age comes a growing thoughtfulness: what was it all for?
What have we made of our lives, what have we known of love, what have we enjoyed of beauty and how do we come to terms with our going? This remarkable book contains thoughts on all such concerns. Its variety is extensive but one thing is sustained throughout. The quality of ideas and expression is of the highest. On whichever page you alight there is something that will offer comfort, delight, and insight. While the world of money, ambition and worldly cares recedes, matters of the heart and spirit come to matter more. This book is the ideal companion on that journey.’ This anthology was prepared for the Newcastle Centre for the Literary Arts as part of the Societal Challenge Theme on Ageing at Newcastle University with support from the Institute of Ageing and Health, Newcastle University.
The Thursday Murder Club
Richard Osman | Fiction
In a peaceful retirement village, four unlikely friends meet up once a week to investigate unsolved murders.
But when a brutal killing takes place on their very doorstep, the Thursday Murder Club find themselves in the middle of their first live case.
Pure escapism
The Guardian
Elizabeth, Joyce, Ibrahim and Ron might be pushing eighty but they still have a few tricks up their sleeves.
Can our unorthodox but brilliant gang catch the killer before it’s too late?
By Connor Richardson with Recommendations from the Lit and Phil.
Persepolis
Marjane Satrapi | Graphic Novel
In powerful black-and-white comic strip images, Satrapi tells the story of her life in Tehran from ages six to fourteen, years that saw the overthrow of the Shah’s regime, the triumph of the Islamic Revolution, and the devastating effects of war with Iraq. The intelligent and outspoken only child of committed Marxists and the great-granddaughter of one of Iran’s last emperors, Marjane bears witness to a childhood uniquely entwined with the history of her country.
“Delectable. . . Dances with drama and insouciant wit.”
New York Times
Persepolis paints an unforgettable portrait of daily life in Iran and of the bewildering contradictions between home life and public life. Marjane’s child’s-eye view of dethroned emperors, state-sanctioned whippings, and heroes of the revolution allows us to learn as she does the history of this fascinating country and of her own extraordinary family. Intensely personal, profoundly political, and wholly original, Persepolis is at once a story of growing up and a reminder of the human cost of war and political repression. It shows how we carry on, with laughter and tears, in the face of absurdity. And, finally, it introduces us to an irresistible little girl with whom we cannot help but fall in love.
Exit West
Mohsin Hamid | Fiction
In a country teetering on the brink of civil war, two young people meet–sensual, fiercely independent Nadia and gentle, restrained Saeed. They embark on a furtive love affair, and are soon cloistered in a premature intimacy by the unrest roiling their city. When it explodes, turning familiar streets into a patchwork of checkpoints and bomb blasts, they begin to hear whispers about doors–doors that can whisk people far away, if perilously and for a price. As the violence escalates, Nadia and Saeed decide that they no longer have a choice. Leaving their homeland and their old lives behind, they find a door and step through. . . .
“Moving, audacious, and indelibly human.”
Entertainment Weekly
Exit West follows these remarkable characters as they emerge into an alien and uncertain future, struggling to hold on to each other, to their past, to the very sense of who they are. Profoundly intimate and powerfully inventive, it tells an unforgettable story of love, loyalty, and courage that is both completely of our time and for all time.
The day war came
Nicola Davies | Children’s
Imagine if, on an ordinary day, war came. Imagine it turned your town to rubble. Imagine going on a long and difficult journey – all alone. Imagine finding no welcome at the end of it. Then imagine a child who gives you something small but very, very precious…
There are few modern children’s books that make you cry. This is one of them.
The Times
When the government refused to allow 3000 child refugees to enter this country in 2016, Nicola Davies was so angry she wrote a poem. It started a campaign for which artists contributed drawings of chairs, symbolising a seat in a classroom, education, kindness, the hope of a future. The poem has become this book, movingly illustrated by Rebecca Cobb, which should prove a powerful aid for explaining the ongoing refugee crisis to younger readers.
We are displaced
Malala Yousafzai| Memoir
Nobel Peace Prize winner and bestselling author Malala Yousafzai introduces some of the faces behind the statistics and news stories we read or hear every day about the millions of people displaced worldwide.
A stirring and timely book.
The New York Times
Malala’s experiences visiting refugee camps caused her to reconsider her own displacement – first as an Internally Displaced Person when she was a young child in Pakistan, and then as an international activist who could travel anywhere in the world, except to the home she loved. In We Are Displaced, which is part memoir, part communal storytelling, Malala not only explores her own story of adjusting to a new life while longing for home, but she also shares the personal stories of some of the incredible girls she has met on her various journeys – girls who have lost their community, relatives, and often the only world they’ve ever known.
In a time of immigration crises, war and border conflicts, We Are Displaced is an important reminder from one of the world’s most prominent young activists that every single one of the 68.5 million currently displaced is a person – often a young person – with hopes and dreams, and that everyone deserves universal human rights and a safe home.
By Connor Richardson with Recommendations from the Lit and Phil.
Girl, Woman, Other
Bernardine Evaristo | Fiction
This is Britain as you’ve never read it. This is Britain as it has never been told.
‘Beautifully interwoven stories of identity, race, womanhood, and the realities of modern Britain. The characters are so vivid, the writing is beautiful and it brims with humanity’
Nicola Sturgeon
From Newcastle to Cornwall, from the birth of the twentieth century to the teens of the twenty-first, Girl, Woman, Other follows a cast of twelve characters on their personal journeys through this country and the last hundred years. They’re each looking for something – a shared past, an unexpected future, a place to call home, somewhere to fit in, a lover, a missed mother, a lost father, even just a touch of hope . . .
THE SUNDAY TIMES 1# BESTSELLER & BOOKER PRIZE WINNER
BRITISH BOOK AWARDS AUTHOR & FICTION BOOK OF THE YEAR 2020
History of Violence
Édouard Louis | Autobiographical fiction
The radical, urgent new novel from the author of The End of Eddy – a personal and powerful story of violence.
‘It stays with you’
The Times
‘A heartbreaking novel’
John Boyne
I met Reda on Christmas Eve 2012, at around four in the morning. He approached me in the street, and finally I invited him up to my apartment. He told me the story of his childhood and how his father had come to France, having fled Algeria.
We spent the rest of the night together, talking, laughing. At around 6 o’clock, he pulled out a gun and said he was going to kill me. He insulted me, strangled and raped me. The next day, the medical and legal proceedings began.
History of Violence retraces the story of that night, and looks at immigration, class, racism, desire and the effects of trauma in an attempt to understand a history of violence, its origins, its reasons and its causes.
Transgender History
Susan Stryker | Non-fiction
Covering American transgender history from the mid-twentieth century to today, Transgender History takes a chronological approach to the subject of transgender history, with each chapter covering major movements, writings, and events.
An invaluable text for anyone who wants to better understand evolving concepts of gender. Essential.
CHOICE
Chapters cover the transsexual and transvestite communities in the years following World War II; trans radicalism and social change, which spanned from 1966 with the publication of The Transsexual Phenomenon, and lasted through the early 1970s; the mid-’70s to 1990-the era of identity politics and the changes witnessed in trans circles through these years; and the gender issues witnessed through the ’90s and ’00s.
Ground-breaking and all-around excellent.
Autostraddle
Transgender History includes informative sidebars highlighting quotes from major texts and speeches in transgender history and brief biographies of key players, plus excerpts from transgender memoirs and discussion of treatments of transgenderism in popular culture.
This timely and relevant book should be required reading.
Portland Book Review
And Tango Makes Three
Justin Richardson, Peter Parnell & Henry Cole | Childrens
Roy and Silo are two boy penguins who live in the zoo in New York’s Central Park. They like to spend all their time together, and so just as the boy and girl penguins begin to build nests, so do Roy and Silo.
But then eggs start to appear in all the other nests, and Roy and Silo’s nest remains empty. So the penguin keeper gets the idea to give them an egg that’s not wanted by another couple.
This is a really delightful story and the message behind it is subtle. It’s a true story, and you can learn more about it in a note at the end.
writes on the importance of LGBT+ History Month & Volunteering with ReportOUT.
LGBT+ History Month is an important time, in which we can reflect on the progress that has been made in the fight for LGBT+ equality, how far we still must go, and where in the world LGBT+ communities still need urgent help. We first started celebrating LGBT+ History Month in the UK in 2005.
This year in the UK we will be celebrating the 50th anniversary of the first official Pride event held in London in July 1972. Pride protests and marches were held before this, but 1972 signifies the founding of London Pride. This is a considerable anniversary to be celebrating, and this LGBT+ History Month we should be looking back at the progress made in these five decades:
1967: homosexuality in the UK was decriminalised five years before the first official pride event, a significant first step in changing social attitudes toward the LGBT+ community.
2001: the homosexual age of consent was reduced from 21 to 18, bringing it in line with the heterosexual age of consent.
2005: same-sex relationships finally gained legal recognition with the introduction of the Civil Partnership Act, followed in 2014 by the right to be married.
2005: transgender people can change their legal gender by acquiring a Gender Recognition Certificate (GRC), gaining a level of legal recognition not before seen.
2007: discrimination based on sexual orientation is outlawed
2010: the 2010 Equality Act Officially adds gender reassignment to the list of protected characteristics
2017: The Alan Turing Law awarded posthumous pardons to those in England and Wales charged under sodomy laws. In January 2022 it was announced that all same-sex criminal convictions are to be pardoned as part of a new scheme
These are just some of the positive steps made in the UK there are many other more, both large and small that have made the UK a safer and happier place to live for the LGBT+ community. However, there are still great strides to be made.
However, the journey toward equality is not a linear one and during that time the UK also experienced a significant decline. In 1988 the UK government introduced Section 28, a law which prohibited schools and councils from “promoting homosexuality”. This included stepping in when children were homophobically bullied and a complete lack of sex education based around non-heterosexual sex. This was repealed in 2003, but harmed public attitudes toward LGBT+ people and had a lasting impact on those who lived through Section 28 during their school years.
In recent years there has also been a marked increase in anti-trans rhetoric in the UK. This is part of a worrying global trend with the UK being noted by both the Council of Europe and ILGA-Europe as having a particularly sharp rise. This has created an increasingly hostile environment for trans people in the UK who are facing largely negative media attention and restricted access to healthcare. Many LGBT+ organisations and trans activists are attempting to make the application process for a GRC less complicated and more accessible as well as trying to counteract a growing trend of anti-trans rhetoric.
But LGBT+ History Month isn’t just about the UK and the progress it has made; it is also about LGBT+ communities around the world who are also fighting for equality. There are currently 71 countries in which it is illegal to be homosexual. In these countries, punishments can range from fines to prison sentences to the death penalty. LGBT+ people are also subjected to incredible amounts of violence by the public and the police.
Last year I began volunteering with ReportOUT, a global LGBT+ human rights charity based in Gateshead. Their mission is based on three areas: Report (research and documentation), Inform (education) and Defend (campaigns). I personally volunteer as a human rights researcher and have been working on book chapters for ReportOUT’s upcoming book which will give an A to Z of the history and current state of LGBT+ human rights in every country. I got involved with ReportOUT because I am a big believer in queer solidarity and mutual aid, and this has allowed me to put my academic research and writing skills to practical use. Though research into the reality of human rights abuses against LGBT+ communities around the world has been sobering, and at times difficult, I am grateful to be part of an organisation that is helping in the fight for social justice. Doing this research has also made it stark just how precarious the rights that we fight for are, and how easily they can be repealed.
In light of the recent conflict in Ukraine, one of my fellow researchers produced this blog post regarding the risks being posed to LGBT+ people in Ukraine. I highly recommend this post to anyone who wants to gain further context of the risks involved with the Russian aggression in Ukraine and get an idea of the work ReportOUT does.
Georgia is a postgraduate student on our MSc in Public Health and Health Service Research. Georgia volunteers for ReportOUT a global LGBT+ human rights charity based in Gateshead. Links to ReportOUT can be fount below.
