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Improving diversity in medical research - changing the narrative and what we need to do that?

Primrose Granville, Broadcaster/Community activist

In the last few years, we have heard certain ‘buzz words’ and phrases regarding health and health care provision being bandied about. The onset of the beast COVID-19 only increased the number. So, what are these words, what is their impact and how do we challenge that? Here are a few that will permeate this piece: anti-vaxxers, hesitancy, vaccine hesitancy, health inequality, engagement, underrepresented, research, medical data and influence.

I am a Jamaican born, raised and educated female who migrated to the UK at 27 years old. Someone my late mother described as ‘too old to break’. Upon arriving here, I had my first pleasantly surprising encounter with the NHS. I didn’t have to pay after receiving treatment! What world was this where you don’t pay for medical treatment? It must be an alternate universe, but it wasn’t. Thus, began my love affair with the NHS. However, 25 years on, it is no longer a ‘honeymoon’, but a marriage where we understand each others shortcomings and we’re staying in love and together.

I spend a lot of time in conversation with my family in friends across the Diaspora, but largely in Jamaica. I am often surprised and pleased at their attitudes towards medical advancement. Despite news reports, the average Jamaican is NOT a medical sceptic, anti-vaxxer, anti-medical research or anything anti-medical. For many, that may come as a shock, it does to me a few times. Then again, I am an average Jamaican living in another country. My friends put it down to suffering enough as a small nation and we will embrace whatever it takes to survive. A quick look at our athletic prowess for such a small country will confirm this. Darwin’s Theory reversed, maybe? Whatever the reason, we love doctors and going to the doctor! We go to the doctor for everything and we do not leave without follow up appointments, which we pay through the nose for! There is no NHS equivalent. I remember lining up at the School Nurse’s room to get our ‘inoculation’ but I don’t remember any objections. I and millions of other Jamaicans, still bear the scar of our Polio vaccine we got in the 70’s.

I live with several medical issues which leads me to always want to participate in medical research. It’s a no-brainer really. I saw my mother and lots of other people around me do it. So, why are some people in my community hesitant to participate in medical research? The answer to that is long and hard to read. In the old days of enslavement, the Africans did not own their bodies. Nothing physical for them was by choice. Not where they lived, how and when they worked, who they procreated with or even socialised with. Enslaved Africans did not own their bodies until they died. Added to that, historically we are not short of anecdotal evidence of abuse, damage and death visited on African bodies and that of their future generations who would eventually be found in every corner of the Globe. Those transgenerational experiences have become messages that cannot be forgotten by millions. These circumstances do not encourage engagement in anything medical until we reach death’s door and even then for some, there will be none.

So, why do we need to change that narrative and how? We could ask all the questions in the world about hesitancy, lack of engagement, impact and inequality. We’ll never change the narrative until attitudes, hearts and minds are dealt with. For people of African Heritage, the scars are real and sometimes very current. The high death rate of Black and Brown people during the first wave of the COVID-19 across the globe was one. The higher risk of Prostate Cancer in Black men, which has been ignored for years. The massive over representation of Black people, especially men, in the mental health system. The way they enter the system, too often by security forces and often brutal. How they’re treated in the lead up to entering that system? It’s usually drug therapy, not talking therapy or CBT. I could go on but won’t. This is about change not blame. So, back to my question. How do we change the narrative?

There is a phrase I learnt recently from leading Science Journalist, Vivienne Parry OBE, which I like very much. Medical Data. These two words make me want to shout from a mountain top, ‘GET INVOLVED!’ History is always going to be there, but we can choose to be enhanced or destroyed by it. We must meet in the middle if there is to be any change in health outcomes for the most underrepresented groups of people globally. Medical data is important to EVERYONE, for African Heritage people, there is too little of it. There just isn’t enough of it to create effective treatment for us as a people.

I was born with Polycystic Kidney Disease, as was my mother, her mother, my sister, son and probably several other people in my family who don’t even know they have it. I have been a pain in my family’s lives for over 20 years. Why? I knew my only child had the condition when he was nine. Not the greatest of news but I knew. I didn’t know my mother had it until I was 28 years old. Both her & my sister didn’t know until they were well into their 40’s and had had three children each. I knew at 27, three years before I became a mother. I chose not to have another child because my kidney function fell by 8% in the 9 months of pregnancy. It wasn’t an easy decision, but I knew it would prolong my kidney function a little longer by not going through other pregnancies. My mother and sister didn’t know this and they both had complete renal failure in their 30’s, I at 48. They spent years on dialysis, I didn’t spend a day. They waited years for kidneys because every pregnancy introduces antibodies to their systems. These antibodies make it harder to match organs. It isn’t exact science and I’m not stating these occurrences as fact however, there must be some merit to my thought process.

History is always going to be there, but we can choose to be enhanced or destroyed by it. We must meet in the middle if there is to be any change in health outcomes for the most underrepresented groups of people globally.

I had a miraculous kidney transplant six months and one day after going on the NHS Blood & Transplant waiting list. This doesn’t normally happen to African Heritage individuals. I don’t consider myself lucky, rather blessed and chosen. What for? To address all the issues, I raised above. No, I am not a fixer, I am a messenger for and to my communities. I didn’t suffer long enough as far as I am concerned. My mother waited nearly 14 years on dialysis, my sister nearly 10 years, waiting for suitable kidneys. That traumatised me. I want my son to wait as long as it takes to find a surgeon and theatre, should he one day need a kidney.

I have made it my life’s journey to change the narrative, using mine and my family’s stories. I started with the Genealogy 2 decades ago. In my own little way, I’m no Scientist, but I love to unearth information. I am doing my own campaigning to change hearts and minds. I know I changed the minds of four ‘Grandmas’ in my community. That’s a major feat! If you win Grandma, you win the whole family. I have changed the mind of my friend who was vehemently against any form of organ donation. He wanted to give me a kidney and after 2 years of ‘interrogation’ & strong arguments against, from him, he is now on the organ donation list. That for me is success.

The journey of a thousand miles begins with one step. I believe we have made that step and they are now becoming large strides. I am now involved in groups talking about Black men and cancer research. I am ecstatic! I also know that every wo/man carries within her/him the world in which s/he must live. We can only try to impact that world positively.


Primrose Granville is an award-winning broadcaster, community activist, health campaigner and volunteer. Born and raised in Jamaica, Primrose migrated to the UK twenty five years ago and lives in Bristol. As a trained early years and special needs educator she is experienced in educating young people both in the classroom and outside of it in her local community. She describes herself as an accidental health campaigner as she is passionate about helping the people know more about their health. As a recipient of a kidney transplant, she is heavily involved in raising awareness around blood and organ donation as well as other medical research. Primrose is a popular presenter and producer at BCFM radio, a community radio station that is based in Bristol and an ambassador for Genomics England.

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