Challenging Inequalities in Involvement for Black and Minority Ethnic Communities in Research

I have asked at many meetings whether ethnicity data was being collected in health research often to be told it was too difficult or not appropriate. I have asked researchers about the potential effects of their research on health disparities and inequalities and received similar replies. 

I so wish I had asked more often, more insistently and louder

I am writing this in response to the comment by Cori ‘Coco’ Gaufe, the young tennis player, following the death of George Floyd and the Black Lives Matter campaign. Her remark strikes a chord… 

“If you are choosing silence, you are choosing the side of the oppressor.” 

Uncomfortable truths

The very fact that an extensive consultation carried out to involve and gather people’s opinion was excluded from the recent Public Health England report about the Disparities in the risk and outcomes of COVID-19 is in itself dreadful. The fact that this was about hearing from mainly black and ethnic minority voices is an outrage. 

Every patient representative, advocate and leader should be raising their voice on this matter. 

The Covid-19 crisis has also raised many other uncomfortable truths about Patient and Public Involvement and yet offers perhaps some rays of hope as well.  (See my previous blog post and this excellent paper on HRB Open Research)

One of the standard models of patient and public involvement has been placing patient representatives on committees.

It naturally invites people who are familiar and comfortable with contributing to meetings, agendas but we tend to come from a similar background. It often means that we begin to assimilate.

There is nothing ‘wrong’ with us, we are ‘the experts of experience’ and not ‘the usual suspects’ as sometimes described. We are not, however, representative of the whole community.

Covid-19 left us all behind as we waited forlornly to be asked our opinions so perhaps now is the time to begin to think differently.

Opportunity

I am now noticing that many small self-help and support groups are using the numerous online meetings to chat together. I am seeing a greater diversity in many of these online meetings than I ever did at face to face events. In the past we might always have wanted to meet in person but clearly ‘needs must’ and maybe it allows more people to get involved. This offers a great opportunity to reach out to engage groups and communities in research – especially as science and treatments are in the news. It, of course, risks excluding those without access to technology but at least it can be more than one or two reps.

Covid-19 is adversely affecting people from black and minority ethnic communities, older people as well as those experiencing other health co-morbidities. These are not the people who we generally see as patient representatives. Saying seldom heard, hard to reach and placing in the too difficult pile is not acceptable.

It is not just Covid-19. Research clearly shows that men with a black African and Caribbean heritage are more likely to develop prostate cancer at an earlier age. Those from a South Asian background are more likely to develop heart disease and diabetes.

This is about health inequalities and their causes. The Health Minister may not know about the Marmot Report – Fair Society, Healthy Lives and the recent review Health Equity in England but we should.

It is by understanding this that we become better informed as patient advocates and more able to make our case for change. It is also about inviting us to reach out and not just pulling people into involvement.

Leading lights

There are, however, strong examples of where people from these communities have been reached and fully involved in learning about their health, using research and taking part in studies. 

The  Genes and Health Study has successfully recruited 100,000 people of Bangladeshi and Pakistani origin in the UK. It has achieved this through community action and a practical approach to engaging and communicating – I wrote about Golden Hearts performance in 2017.

Katie’s Team works in the East End of London on research about women’s health. Their meetings discuss the realities of access to their GPs, their families and the challenges of research.

Prof Kamlesh Khunti, from the Centre for BME Health, is one of those leading figures asking for research into the effects on black and minority ethnic communities. His article on Covid-19 and Ethnicity sums up the need for research to change.

It is by knowing about these examples we can challenge the idea that it can’t be done. It is about learning from these examples that we all develop an understanding and competencies.

Involvement & Inequalities

Those who are actively involved in research need to constantly be asking more astute questions…

  • What have you done to ensure that this is a priority for patients and communities?
  • What has been done by the researchers to ensure that the communities this research is meant to address have been spoken with and their views taken into account?
  • What us already known about health inequalities in your area of research?
  • What ethnicity data is being collected with your study?
  • How are you planning to let all participants know the results?
  • Are you aware of the resources to help you reach out to members of the community?

                  How to engage seldom heard groups – a guide from East Midlands AHSN 

             Working with the voluntary and community sector – a guide from UCL

You may also find this series of articles from The Kings Fund about Equality & Diversity of interest.

Being clearer about the questions we ask and being able to refer to relevant resources helps to shift the balance of knowledge. It means we can think outwardly by visiting groups rather than inwardly hearing from a patient representative.

There is however a much deeper question which Meerat Kaur asked me which is about whether our current ‘representative approach’ prevents us acting outwardly. Meerat spoke about being informed in her thinking through twitter chats with Lynn Laidlaw and Eleni Chambers.

Learning from History

It is useful for us, as patient advocates in research, to find out and build our understanding about the past. I would strongly recommend reading about the following…

The Tuskegee Study is an extremely uncomfortable, clearly discriminatory example of research practice at its worst. Scharff and others describe how it is about more than Tuskegee in study Understanding Mistrust about Research Participation

The story of Henrietta Lacks is a further sobering example of the arrogance and abject failure to inform and communicate what was being done with human cells.

Some of the barriers to recruitment are explored in this article by Dancy and others Community Based Research

We may want to learn from outside health and see how people are trying to overcome the barriers https://reachingthehardtoreach.eu

Dr Petra Boynton has put together a superb Reading List which has plenty to get you started.

Knowing this helps us to understand about other people’s experience, ethnicity and cultures for mutual respect.

More Recently

The Mental Health Foundation provides a good summary about the importance of mental health for those from a Black and Minority Ethnic Communities – https://www.mentalhealth.org.uk/a-to-z/b/black-asian-and-minority-ethnic-bame-communities

The Lammy Review – provides an independent review into the treatment of, and outcomes for, Black, Asian and Minority Ethnic individuals in the Criminal Justice System. 

Much of what I have written apply to the many other health inequalities – for women, people with learning and physical disabilities, young people. Change needs to happen for everyone and it needs to be about addressing the causes as well as the effects. Thank you @ResearchNurseD.

Personal Thoughts – a few key moments

Growing up

I would like to thank Mr Cadogan who regularly came in to my parent’s shop, chatted away and smiled kindly at me – a little boy. He was the first black person I met. 

Later I read the book Black Like Me by John Howard Griffin. I have linked this to an article about the book which very much epitomises how I feel about it now. But, at the time it made a difference to the way I thought.

College

One of my lecturers, was Cecil Williams. Cecil had spent time under house arrest in South Africa after objecting to the apartheid laws following the Sharpeville Massacre. 

Annually, around the date of his escape he would tell the story of his break for freedom. For over an hour, as first year students, we were engrossed – the telling of the arrest, the planning of the escape, the risks, the near misses. I was shocked at the injustice, the audacity of his escape, especially when comparing the quiet, gentle, unassuming man who sat telling this story. He said little about what he had been fighting against, the people he was working with or the fact that his house arrest followed a period in prison. 

There is more about Cecil Williams at South Africa History Online. In 1998 a film about him was made called ‘The man who drove with Mandella’

Teaching

My life as a teacher was about using drama as a learning medium, it was often about exploring inequality, injustice and helping students understand and make their own meaning. It was mainly spent working with young people experiencing difficulties who were often excluded from schools in Glasgow and then later in Nottinghamshire. It was about finding ways to include them in learning activities. It was about finding things they could do, building self-esteem and giving them confidence in their abilities. 

Post Cancer

Many, many years later when I was involved with a crime reduction partnership in Nottingham, we were able to invite the Rev Jessie Jackson to visit the City. The statements he made and message I took were that this was fundamentally about democracy as well as race, ethnicity.  He commented on the need to see and hear ‘our likes’ on groups, committees and Boards to show democracy in action to act on equality. 

Finally

This is written for my grandchildren, their future and that of the many other young people who are raising our awareness of the need for change.

Thank you to Meerat Kaur, Shahnaz Aziz, Lynn Laidlaw, Eleni Chambers and others.

ADDITIONAL INFORMATION

Thank you to those who have provided information about other papers, writings and further sources.

https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.13078

Including ‘seldom heard views in research by Suman Prinjha, et al https://www.readcube.com/articles/10.1186/s12874-020-01045-4

David Lammy, MP, highlighted in a tweet that he made 35 specific recommendations in the Lammy review (pdf). He added that there are 110 recommendations in the Angiolini review (pdf) into deaths into police custody. There are 30 recommendations in the Home Office review (pdf) into the Windrush scandal. Twenty six into Baroness McGregor’s review (pdf) into workplace discrimination.

16th June – The Missing Report from Public Health England published after campaign by HSJ and others:

Click to access COVID_stakeholder_engagement_synthesis_beyond_the_data.pdf

Nasima BegumArpana Verma and Bella Starling have written an excellent piece for Manchester University on ‘How inequalities are affecting the response to COVID-19’ – http://blog.policy.manchester.ac.uk/posts/2020/04/how-inequalities-are-affecting-the-response-to-covid-19/

The Association of Chief Executives of Voluntary Organisations have produced an excellent report: Home Truths: Undoing racism and delivering real diversity in the charity sector

Jacqui Gath has rightly reminded me in a comment of the importance of the Protected Characteristics set out by the Equality Act 2010.

The National Institute for Health Research (NIHR) is looking to improve inclusion in all aspects of health research. Check out the Guidance Information

The UK Parliament has produced the Black Community Human Rights Report on the findings of research into people’s experience of health.

What is Trials Methodology Research – a patient’s viewpoint.

Note: A report on Patient, Public Involvement and Trials Methodology Research can be read here.

Trials Methodology Research (1) is about looking at the way health research is carried out – i.e. improving the tools and trade of research practice. It is carried out by researchers often referred to as Methodologists.

These types of studies differ from doing things to patients – testing new drugs and treatments which can be described as Interventional Research. 

Yet, it is still research and needs to have a relevant question, an understandable proposal and lay summary along with all the other aspects of a study that can benefit from the patients’ viewpoint, an external perspective and a grounding in reality.  

Patient and Public Involvement has a place and the MRC NIHR Trials Methodology Research Partnership are a welcoming bunch of curious people. By ‘curious’ I mean in the pleasant ‘enquiring’ sense of the word. 

Why is Trials Methodology Research important for patients?

It seems to me (and I would really welcome other opinions) that the value for research participants are…

  • To see that the most effective research methods are being used to gather and understand evidence 
  • To be assured that trial methods are being reviewed, evaluated and progressing
  • To know that improvements and innovation are being discussed and implemented
  • To be certain that the methods themselves have been evaluated using highest quality research 

Trials Methodology Research, therefore, increases the likelihood that quicker and better answers might be found; data is used more effectively and efficiently; and, the way research is carried out is advanced. As a former teacher, it is the equivalent of having a thorough understanding about learning as well as the subjects we teach – the subtle difference between an educationalist and a teacher.

As patients, we have come to expect health research that rigorously tests out new drugs, treatments and care as part of a constant search for improvement of patient care. We are actively involved with researchers in these interventional studies. Such evidence that is gathered matters as much to us as the researchers. 

It is, in many respects, unsurprising that the same thoroughness is used to test the research methods themselves. It is ultimately, in our interests as patients, that we better understand why people choose to take part in studies, whether one method be better than another, and what are the best ways of analysing the data. 

Involving patients and the public in the sphere of Trials Methodology Research is increasing and we, as patients, may need to consider how to make this meaningful for research, for us and future trial participants.

Involvement with Methodologists feels like another stage in our learning about research. It is a bit like going to college after school (even if only part time). It becomes more about questioning the picture on the jigsaw box as well as the individual pieces. It is about helping to make research itself more effective and efficient to the benefit of patients.

Patient, public involvement with Trials Research is described by Alice Biggane (2), as helping “to increase both the value, integrity and quality of research”. These seem to be vital components for all research but particularly important for Trials Methodology Research especially as we look towards the greater the use of data, digital technologies and artificial intelligence.

I believe that our involvement with Trials Methodology Research also helps us to be more capable partners and advocates. It helps us step slightly away from our personal experience of health and think more of the concept of ‘patient’. Though our personal experience remains the driver for change, we begin to think in the abstract to make it better for all. It also assists with our knowledge of research practice and the things we don’t know. 

Patient experience, our voices and presence are needed to ensure the compass points in the right direction and that the realities of people’s lives are taken into account.

Source information

1. Definition: Research into the methods used in the design, conduct, analysis, and reporting of clinical trials is essential to ensure that effective methods are available and that clinical decisions made using results from trials are based on the best available evidence, which is reliable and robust. Catrin Tudor Smith, et al

2. PPI in research: a reflection from Early Stage Researchers

Alice M Biggane1,2*, Maria Olsen2,3* and Paula R Williamson1

Actively Involving Patients/Public in Trials Methodology Research – https://www.methodologyhubs.mrc.ac.uk/files/5715/9016/6157/FINAL_2020513_TMRP_PPI_Workshop_Ver_2.pdf

My First Blog Post

New Blog Site for

Derek C Stewart!

Be yourself; Everyone else is already taken.

— Oscar Wilde.

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.

First of all – I hope everyone is staying as safe as possible, keeping well and being as kind as we can be. I am taking the view that if I am to be isolated I might as well learn something new!

  1. Using WordPress as my blog site
  2. Learning Gaelic from Duolingo

Like everything new, it all feels a bit strange so I am just taking it step at a time.