Research report

IMPACT OF COVID-19
ON HIGH-RISK
INDIVIDUALS IN THE UK

demanddiversity.co
INTRODUCTION
– Black, Asian and minority ethnic communities are underrepresented in clinical trials.1

– The risk of death from COVID-19 is generally higher among Black, Asian and minority ethnic
communities than white people. Due to this, there is a demand for more diverse participants
to take part in clinical trials to ensure the effectiveness and safety of the vaccine.2

– The race to find a vaccine to combat the COVID-19 pandemic has forced clinical trial sponsors
to re-assess their patient recruitment strategies to be more inclusive.3

– Demand Diversity has conducted extensive research within the UK, using participants of a
variety of ages, occupations and ethnicities, to understand their perceptive on the pandemic,
clinical trials and general healthcare.

– The research took a mixed quantitative and qualitative approach, with an online survey
and in-depth interviews conducted.

– This report highlights key insights from the research, including patients’ concerns, how
COVID-19 continues to impact them, their thoughts on clinical trials, and their opinions on
how to make healthcare more inclusive.

1. https://www.tandfonline.com/doi/abs/10.1080/13557858.2016.1182126
2. https://coronavirusexplained.ukri.org/en/article/cad0011/
3. https://blogs.deloitte.co.uk/health/2020/10/diversity-and-inclusion-in-clinical-trials-an-imperative-especially-in-times-of-covid-19.html
CONTENTS

05 EXECUTIVE SUMMARY

08 METHODOLOGY

10 DEMOGRAPHICS

14 DATA ANALYSIS OF KEY QUESTIONS

28 THEMATIC ANALYSIS OF INTERVIEWS

39 CONCLUSION
EXECUTIVE
SUMMARY
EXECUTIVE SUMMARY OF SURVEY – People are generally very worried and apprehensive about the COVID-19 pandemic.
The results show that individuals from ethnic minority groups are generally more scared
of the pandemic compared to white people.
– 66% of participants stated that they had a specific illness. However, only 33% of all
participants were informed by healthcare professionals that they class as high risk.
– 23.6% of key workers stated that they had, or have, COVID-19 compared to
10.8% of the rest of the participants.
– Although the majority of people had never taken part in a clinical trial, over 60% of
people who did were white. Less than a quarter of people were Asian or Asian British.
– People are generally aware that COVID-19 clinical trials are taking place, but most
people would not consider taking part. A huge 94% of the Black ethnic group stated
they would not take part compared with 75% of white people.
– Those from the Black ethnic group are particularly sceptical of clinical trials, due to
a lack of trust in the system.
– Being provided with clear information, and informed of the potential risks or side effects,
are seen to be the most important factors when considering to take part in a trial.

Surveys carried out August and September 2020 and respondents were entered into a prize draw to win a gift card at random for their participation
EXECUTIVE SUMMARY OF INTERVIEWS
– COVID-19 has impacted ethnic minority communities in similar ways.
However, different concerns and priorities were raised by the Indian community.
– Ethnic minority groups, particularly from the Black community, were offended by
the statement that ‘ethnic minority people are more likely to die from COVID-19’
as it implied weakness.
– Across all groups, healthcare is an extremely taboo topic of conversation.
It is believed this is a key reason for the lack of participation in clinical trials.
– People are aware that ethnic minority groups are underrepresented in healthcare
and clinical trials.
– Reaching out to community centres and societies, and advertising clinical research onto
Asian TV channels, were suggested as ways to further encourage communities to take part.
– There are doubts that trust can ever be fully regained in ethnic minorities and healthcare.
– There is some awareness for cultural competency and the lack there of it.

Interviews carried out September 2020 and respondents received a gift card for their participation
METHODOLOGY
METHODOLOGY
PARTICIPANT RECRUITMENT

Extensive research was conducted to The locations and postcodes

explore diverse locations and postcodes sourced were used to best inform
in England. This was done by exploring
the targeting of Facebook ads.
the demographics of each location.

The Facebook ad copy and imagery The Facebook ads then appeared on the
were composed with ethnic social platforms of people living near these
minority participants in mind, to locations, thus giving us a more diverse
further increase this reach. range of participants.
DEMOGRAPHICS
 SURVEY DEMOGRAPHICS
ETHNICITY GENDER AGE
37.5% 36.5% Female
18

Male
1.9%
73.1% 18–29
30

14.8% 25.4% 2.4%

30–39

2.4% 4.6% 4.1% 40

1.2%
Prefer
17.4%
White Black / African Asian / Asian Middle Eastern Mixed / Other not to say 40–49
/ Caribbean / British Multiple ethnic 50
Black British groups
21.5%
50–59
60
ARE YOU WORKING IN A “KEY WORKER” ROLE? 36.7%
60–69
70

26.7% 73.3% 21% 70–

Yes No
79
80

2.9%
0% 16% 46% 80+

of Middle Eastern people of white people of Black / African / Caribbean /

were key workers. were key workers. British were key workers. N = 413

N = 409
SURVEY DEMOGRAPHICS Illnesses / condition

83 30 31
Asthma Heart Disease COPD

97 140 9
Diabetes Hypertension Arthritis

8 3 9
Chronic Kidney Disease Parkinson’s Disease Liver Disease

3 30
Multiple Sclerosis Other

N = 271

COPD = Chronic obstructive pulmonary disease

DATA ANALYSIS
 DATA ANALYSIS
HAVE YOU, OR ANYONE ELSE IN YOUR FAMILY OR COMMUNITY,
HAD COVID-19?

Yes
I know someone
who has

22.7% 23.6%
of key workers
stated that they
No 66.5% have, or have had,
COVID-19. This
is much more than
the average across
10.8% all participants.

Yes
I have

N = 406
 DATA ANALYSIS
ON A SCALE OF 1–7, HOW CONCERNED ARE YOU ABOUT COVID-19?
(1 = not at all, 7 = extremely concerned)

All responses

7.5%
4.7%
7.0%

11.2%

21.4%

13.9%

34.6%
Not at all Extremely concerned

N = 402
 DATA ANALYSIS
ON A SCALE OF 1–7, HOW CONCERNED ARE YOU ABOUT COVID-19?
(1 = not at all, 7 = extremely concerned)

Black, Asian and minority ethnic groups

Ethnic minority
groups are

Not at all Extremely concerned more

worried
about COVID-19

White ethnicity groups

N = 150
N = 250
 DATA ANALYSIS
HAVE YOU BEEN TOLD IF YOU ARE AT RISK OF BEING
SERIOUSLY ILL IF YOU GET COVID-19?

With 66%
of participants
having stated they
had an illness; it
No 66.8% 33.2% Yes is surprising that

only 33%
were told they
class as high risk

N = 397
 DATA ANALYSIS
HAVE YOU TAKEN PART IN A CLINICAL TRIAL?

61%
of people who
had taken part in
Yes a clinical trial before
2.7% I know someone are from the white
No 92.3% who has
ethnic group.
5.0% Yes
I have
22%
were from the
Asian / Asian British
ethnic group.

N = 363
 DATA ANALYSIS
ARE YOU AWARE THAT CLINICAL TRIALS ARE
TAKING PLACE TO TEST COVID-19 VACCINES?

85.6% 14.4%
Yes No

WOULD YOU BE INTERESTED IN TAKING PART IN A

CLINICAL TRIAL FOR COVID-19 VACCINES?

26.2% 73.8%
Yes No

N = 367
DATA ANALYSIS
DIFFERENCES BETWEEN ETHNIC GROUPS
(Likelihood of taking part in a COVID-19 vaccine trial)

Black / African / Caribbean / Black British ethnic groups

5.7% 94.3%
Yes No
There is a

significant
Asian / Asian British ethnic groups
difference
between the Black /
29.5% 70.5% African / Caribbean /
Yes No
Black British ethnic
group compared to
the others
White ethnic groups

25% 75%
Yes No
 DATA ANALYSIS
HOW DOES THIS DIFFER (IF AT ALL) TO HOW LIKELY YOU ARE
TO TAKE PART IN A CLINICAL TRIAL FOR ANOTHER ILLNESS?
(Thinking about how likely you are to take part in a COVID-19 vaccine clinical trial)

60%

50.2%

People are
40% more
28.5%
reluctant
to take part in
21.3% COVID-19 clinical
20% trials compared to
other illnesses

0%
More likely Equally likely Less likely

N = 263
 DATA ANALYSIS
HOW DOES THIS DIFFER (IF AT ALL) TO HOW LIKELY YOU ARE
TO TAKE PART IN A CLINICAL TRIAL FOR ANOTHER ILLNESS?
Those who are more likely to take part in a COVID-19 vaccine clinical trial…

61.7% feel it is crucial to take part 27.7% would take part in the

as it is important or urgent that we find a clinical trial as they would like to help find a
cure / vaccine for coronavirus: cure for the greater good:

“Because we urgently need a vaccine” “I would be so proud of myself if I took part

in a study to save millions of lives. l would be doing
it for my 5 kids, grandkids, nieces and nephews”

“As it's so vital to know what is going to protect us”

I think because I was so ill, as were other

family members, I would do what I could to
“Coronavirus is a pandemic, find a vaccine. This is a world pandemic
the world cannot cope without a cure” which we need to get under control”

N = 56
 DATA ANALYSIS
HOW DOES THIS DIFFER (IF AT ALL) TO HOW LIKELY YOU ARE
TO TAKE PART IN A CLINICAL TRIAL FOR ANOTHER ILLNESS?
Those who are less likely to take part in a COVID-19 vaccine clinical trial…

33.6% are worried 24% are worried 5% of people interestingly

about the potential side effects that the vaccine has not been mentioned they were worried
and risk of death associated tested enough on humans for about their ethnicity and
with a COVID-19 vaccine: it to be safe. They’re scared of didn’t want to be tested on:
the unknown:

“Because the side effect might be “I have concerns about earlier statements
as bad as the corona itself” made by government ministers using
“It is a new virus so no one knows what black people to trial untested drugs”
they’re doing, it's all an experiment”

“If something happens to me then

who will look after children” “There is still suspicion about why
corona has hit the black community
so hard. It does make me a little more
“The treatment is rushed and not
cautious about volunteering to be
enough is known about the vaccine
“There isn’t enough time for research to used as a guinea pig as I am suspicious
to make an informed choice. Vaccines
make sure that the vaccine doesn’t cause about the efficacy of the treatments
take 10 years to develop.”
long term damage or side effects” targeted at my community”

N = 134
 DATA ANALYSIS
WHAT DO YOU THINK WOULD MAKE YOUR FAMILY / FRIENDS
WANT TO OR NOT WANT TO TAKE PART IN A COVID-19 VACCINE
CLINICAL TRIAL?
(Thinking about your family / friends who are at risk of being seriously ill from COVID-19. For example,
those in Black, Asian and minority ethnic groups, the elderly or individuals with certain conditions such as
asthma or heart disease.)

The majority of people discuss the risk of negative side effects, their safety, and the fear of the unknown with clinical
trials. Some people mention that these individuals may feel like guinea pigs in trials.

“If the clinical trial is not safe and would give you “What the government is saying, that it affects
side effects. Also not getting any information about it black people more, makes us believe they want
and no company information on how safe it is” to use us as guinea pigs”

“They need to be open and honest about possible “The risks they are taking. In the event of failure
effects. There is a fear of harm from trials and a lack (worst case scenario), they will be leaving behind loved
of trust in the system carrying out the research” ones who will feel they lost someone unnecessarily”

N = 180
DATA ANALYSIS
IF YOU WERE DECIDING TO TAKE PART IN A CLINICAL TRIAL
FOR A COVID-19 VACCINE, HOW IMPORTANT WOULD THE
FOLLOWING FACTORS BE TO YOU?

Being given clear information about the clinical trial

The potential risks to me, such as side effects

Having access to a website with information about the clinical trial People believe
Knowing I’d be given updates about how the clinical trial is going receiving clear
Having a leaflet to take home with information about the clinical trial
information and the
potential side effects
How safe I feel going to a hospital
are the most
The potential benefits to me and others
important factors,
How far I have to travel to the appointments
demonstrating that

people like
How it affected my ability to carry on working

How often I have to go to appointments

Knowing I’d be contributing to important research

to feel
informed
How it affected my ability to care for someone (e.g. childcare)

Being thanked, supported and valued for taking part

The number of tests or procedures at each appointment

Being able to bring a family member, friend or chaperone to appointments

0 40 80 120 160
DATA ANALYSIS
HOW DIFFERENT WOULD YOU FEEL ABOUT JOINING A
CLINICAL TRIAL IF YOU KNEW THE PERSON ASKING YOU TO
TAKE PART HAD A GOOD UNDERSTANDING OF AND RESPECT
FOR YOUR CULTURE AND/OR RELIGION?

60%

Interestingly, people
don’t believe that
40%
cultural understanding
would impact their
decision to take part;
could this be
20%
an unconscious
factor?

0%
Less likely More likely No different N/A
N =239
THEMATIC
ANALYSIS
INTERVIEW DEMOGRAPHICS 7 x 30-minute interviews
were conducted to gain a more in-depth understanding into the opinions of people from ethnic
minority communities. The aim was to understand how the wider community also felt regarding
coronavirus and clinical trials.

Ethnicity

Indian x2 Black African x2 Indo Caribbean

Pakistani Hispanic

Disease areas

Diabetes Asthma Leukemia

High blood pressure Arthritis Endometriosis

THEMATIC ANALYSIS
COVID-19 IMPACTS ETHNIC MINORITY GROUPS DIFFERENTLY

Although all people expressed emotional concern with COVID-19, such as not
being able to see family and friends, there appeared to be distinct differences
between communities.

The Indian community expressed concerns over the rituals and ceremonies that
usually follow when someone dies:
It’s more than just
worrying about
As the Indian community have rituals and ceremonies when someone dies, their biggest
negative symptoms;
concern is not being able to say goodbye to their loved ones if one was to pass away from
coronavirus in the correct way.” - INDIAN social distancing is
taking over culture
and tradition in
One participant highlighted this concern across her wider community as well: an emotionally
detrimental way
We have ceremonial things – we dress them up and “My friends mother died and she’s
do their makeup – and with coronavirus we can’t do very angry that she did all these
that. I have a friend whose husband died and without regulations that the government
anyone knowing, she did her prayers with him whilst have set out, as she couldn’t do
at home, so that she was able to.” - INDIAN anything for the mother.” - INDIAN
THEMATIC ANALYSIS
ETHNIC MINORITY GROUPS MORE AT RISK OF COVID-19

Individuals from Black, Asian and minority ethnic groups express awareness that they
are more at risk of COVID-19 but feel frustrated by how the government has handled
the situation.

People believe that by highlighting this difference in risk, they are unnecessarily singled
out and worries are heightened.
This could stem from
“You read that black people are more susceptible to catching coronavirus,
which isn’t helpful at all as it makes you even more worried.” – BLACK AFRICAN a lack of
cultural safety;
People are offended as they feel the media has portrayed ethnic minority groups as not dealing with
‘genetically weaker’. It is believed that this communication style has discouraged situations and
ethnic minorities groups to take part in clinical trials in the past, and this has become information in the most
well rooted in society. They feel anxious that they are ‘guinea pigs’ in the clinical trials. appropriate way

“The thing that became annoying is that
people were saying Black and Asian ethnic
minority people are more predisposed to
catching coronavirus, so already they were
calling us weaker genetically.”
- INDO CARIBBEAN
“If we look at other countries where these
people had families, at that time people were
not dying in Africa or the Caribbean, it was just
people who lived in big cities. So I think it was
quite offensive actually and it took people
back a bit.” – INDO CARIBBEAN
THEMATIC ANALYSIS
HEALTHCARE IS A TABOO TOPIC

There appears to be a lot of taboo around conversations regarding health and

wellbeing within ethnic minority groups, particularly Asian and Black African.

This could explain why these communities take part in clinical trials less frequently.
It appears that these communities take ‘less risks’, and therefore would not be
prepared to take any chances with their health in a clinical trial.
In order to break
“I think healthcare needs cultural competency. In the South Asian community, older women do not the stigma,
know how to explain mental health problems. They complain about back pain, stomach pain, but they community leaders
are describing anxiety or depression. But unless you know the questions to ask people, this doesn’t within these
come out. For some cultures, psychological symptoms are alien words.” – SOUTH ASIAN
communities must
speak up to
“Death is a taboo word – no one talks about it. No one wants to admit that they have an illness normalise these
because it is linked to death and people do not want to become untouchable. People like to gossip
about this. My experience in the NHS, if anyone was close to death, it is not an acceptable thing conversations
because they always believe that God will make it alright." – INDIAN

“In African communities, if people pass away from cancer, they don’t mention it, it’s very secretive.
I think it’s just a taboo in our society and people don’t like to be associated with those types of things.
In the white community they are very honest but, in our community, they don’t like to share
those personal details.” – BLACK AFRICAN
THEMATIC ANALYSIS
AWARENESS OF UNDERREPRESENTATION IN HEALTHCARE

People are mostly aware that ethnic minority groups are underrepresented in
clinical trials.

For the most part, people believe this is due to the groups being ‘tight-knit’ and
‘hard to reach’, as well as the lack of trust they have in the healthcare industry.

“I’m aware they are underrepresented, and they always will

be as the people don’t come forward.” – HISPANIC
“Our people don’t take the information
and see it for what it is.” - INDIAN
There are
two barriers;
People also agreed that healthcare and the government could do more to help share the close-knit nature
and promote clinical trial information: of these communities
and the lack of efforts
“From a psychological perspective, we don’t do enough to recruit people from ethnic minorities. from the health
When you read through the trials, we cannot be surprised when the side effects come up in people industry at large.
who aren’t white or male.” – BLACK AFRICAN

It is apparent that people don’t want to be the first to try something risky:

“People in our community don’t donate blood as much as the white community either.
It’s hasn’t existed in our community for many years so its difficult.” - BLACK AFRICAN
THEMATIC ANALYSIS
ENCOURAGING ETHNIC MINORITY GROUPS TO TAKE PART…

Many of the people we interviewed believe visiting community centres and places of
worship is the most successful way to try and change negative perceptions of clinical
trials. Advertising on Asian TV channels was also deemed as the best way to connect
with this community as people will trust information showed on there:

“Most people will throw a leaflet in the bin. But if you

“I definitely think the information should be
were to go to their social groups and present your
shared on Asian TV channels to connect with
research to them, people will be more likely to listen. The takeaway point
the community.” – PAKISTANI
Fairs / festivals would be best.” – INDO CARIBBEAN here is that ethnic
minority groups
“They watch a lot of Indian TV stations – so if “Going into the African Community groups and really value
information from
someone from that station is telling them that reaching out / explaining to them the impacts. There’s
volunteers are needed then they will be more likely loads of groups so it’s about going and approaching
to do it as it is from a trusted source.” – INDIAN them directly.” – BLACK AFRICAN
a trusted source
Even raising awareness around the fact that ethnic minorities are underrepresented
in clinical trials would go a long way to encourage people to consider taking part
themselves. One participant was reluctant to take part in any clinical trials, but
ended the interview saying:

‘”After today I am a little more convinced I would attend.” – PAKISTANI

THEMATIC ANALYSIS
BUT PEOPLE ARE STILL SKEPTICAL…

Although there is a big preference for going out and talking to the community,
people are still skeptical about how well this will work given the level of mistrust
that already exists.

“Even as a diabetes nurse, it took a “The government will find it very Ultimately,
long time to get people to believe that
diabetes is going to harm you, it slowly
difficult to gain their trust as they feel
undervalued for so long – and they there is no
trickled into the communities and
they’re becoming more aware
have been. I’m not sure how you can
get their trust back – aside from
easy route
of it. It’s more than just one going out there and talking to the when it comes to
campaign, it’s a long process.” community. But that takes a while.” improving diversity
– INDIAN – HISPANIC in healthcare

Behaviours are so deeply rooted into their culture, it’s going to take a lot of work
to change. It’s about building relationships within a community and encouraging
the ‘information to trickle in’. It’s not something that can be combatted with a
‘one-off campaign’.
THEMATIC ANALYSIS
PERSONAL EXPERIENCE

One participant explained their experiences with community outreach and the
difficulties they faced when communicating with ethnic minority groups.

“I’ve worked with a lot of communities when I worked in the The difficulty is often
council, where there’s a massive minority ethnic population. with the design of the
recruitment materials.
We sent thousands of people information when we worked
on advertising free school meals. They don’t read it. We put up leaflets How can we
in community centres, schools, blitzed every house with them and
they still didn’t come forwards to redeem the free meals.
make this more
readable and
They only came forwards when their Mullah at the mosque
told them. Their children wouldn’t get fed otherwise. trustworthy?
They didn’t read anything unless they thought it was official..
About 70% didn’t come forwards for the free meals.”

- HISPANIC
THEMATIC ANALYSIS
THE IMPACT OF CULTURAL SAFETY

It seems that cultural competency could be one way of improving relationships

and understanding. People are aware of the positive impact that cultural safety
has on improving diversity in healthcare and suggest that more must be done to
improve inclusivity.

It’s clear that

“A white woman talking to a training into

“Maybe the people
who run the clinical trials
need to speak different
languages and become
more culturally competent
and find ways of
communicating more.”
– INDO CARIBBEAN
group of other white women
will sound more credible than a
girl doing the same but dressed
in a sari as an example.
Because you look like them
and talk like them. This would
be unconscious behaviour,
you wouldn’t be aware of it.”
– INDO CARIBBEAN
“I think diversity within
both researchers and
cultural safety
participants is pretty must become more
poor, and it affects the readily available to
outcomes and the healthcare professionals
recommendations they
come out with as well.”
– BLACK AFRICAN
THEMATIC ANALYSIS
CLINICAL TRIAL PREFERENCES
Participants were asked to imagine a clinical trial recruitment leaflet, and then asked questions based on it:

WOULD YOU READ A LEAFLET?

“If it wasn’t relevant to me, I’d consider it to be
Majority of people would read the leaflet but would only take real junk mail” - INDO CARIBBEAN
interest if they believed the clinical trials was relevant to them early on.

PAPER OR DIGITAL?
“Majority of our people are not very good with
Overall there was a preference for digital leaflets to be sent via email,
computers and struggle to read emails.
as this is a more cost- and environmentally-effective way. However, there Even very well-off people” - INDIAN
were comments about the older generation struggling with technology.

MOST IMPORTANT INFORMATION?

There was agreement that leaflets need to be informative, such as explaining
the research, the level of involvement, the potential risks, and the eligibility.

IS LANGUAGE IMPORTANT?
Overall, people believe using different languages is important to “I think language is really important.
You have to know who you’re sending the
encourage people to take part. People will take more notice of it if it’s information to first of all” - INDO CARIBBEAN
written in their language.
CONCLUSION
CONCLUSION What we have found
Ethnic minority groups are more reluctant
to take part in clinical trials. They are aware
they are underrepresented in clinical trials,
namely due to social norms, mistrust in the
health system, and a lack of effort made
from healthcare professionals.
Healthcare generally is a taboo topic across
the different ethnic minority groups.
Approaching community centres and
advertising on local TV stations is the most
effective way to advertise for a clinical trial.
Improving diversity in healthcare is not an
easy win. A lot of long-term work is needed
to build trusting relationships.
COUCH HEALTH WOULD LIKE TO THANK ALL THE PARTICIPANTS WHO CONTRIBUTED TO THIS RESEARCH.
Future implications
Clinical trial sponsors, as well as the health
industry at large, must develop more trusting
relationships with ethnic minority groups. This
can be done by integrating within the communities
and with personalised advertisements.
One way to improve communications and
relationships between clinical trial sponsors and
people from minority ethnic groups is through
education. Cultural safety training is an important
way to equip sites with the knowledge and tools to
be more inclusive when working with a diverse
group of study participants.
More research is needed to explore the most
optimal ways to filter health information into
close-knit ethnic minority communities, to build
trust and to improve diversity in healthcare.
 demanddiversity.co

couchhealth.co

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