Social listening report

DISABILITY AND
CLINICAL TRIALS

demanddiversity.co
INTRODUCTION
– The COVID-19 pandemic has had a huge impact on the healthcare industry.
It has encouraged pharmaceutical companies to prioritise improving diversity and
inclusion in clinical trial populations.

– When we think about improving inclusion and diversity, we often think of ethnic minorities.
However, diversity isn’t just about ethnicity. It encompasses gender, age, socioeconomic
status and more. One group that is often overlooked is people with disabilities.

– People with certain disabilities are often excluded from clinical trials due to protection
and ethical reasons. This has led to questions about how effective and safe drugs are
among these people, since they are not represented.

Social listening has been conducted to assess what conversations are taking place
around this topic.
SUMMARY OF KEY FINDINGS

– When searching for conversations about disability and clinical trials in 2020,
COVID-19 is often discussed.

– People express their frustration with how healthcare professionals talk about
disability or people with a disability.

– People express concern about people with disabilities being left out of health
considerations. This has been exacerbated by the COVID-19 pandemic.

– There are frequent conversations on social media about clinical trials ‘going wrong’,
such unwanted side effects and how some investigative drugs have previously caused
disability among trial participants.
DISABILITY AND HEALTH INEQUALITIES
– People with disabilities face many challenges in everyday life, including health-related
needs and inequalities.
– People with physical, sensory and learning disabilities can face difficulties in using health
services. For example, people with sensory disabilities may need support communicating
(by lip reading or using sign language) when dealing with health professionals1.
– This explains why clinical trials might be daunting for them, and trials therefore need
to be accommodating.

According to the Office for National Statistics (2019)1

The number of
56.8% 13.3% 21.8% people with physical
ill health or disability
of disabled people of disabled people of disabled people experiencing
were unemployed reported feeling lonely had a degree homelessness
(18.2% non-disabled) (3.4% non-disabled) (38% non-disabled) has risen by 53%2

1. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/improvingdisabilitydataintheuk/2019
2. https://www.crisis.org.uk/about-us/media-centre/number-of-people-with-physical-ill-health-or-disability-experiencing-homelessness-rises-by-53-crisis-response/
DISABILITY INEQUALITIES
Health implications
and lack of social support More people
lead to less education with disabilities are
and employability unemployed and
therefore become
homeless

– Further research has shown

that people with a disability are People with
stuck in a vicious circle with disabilities do
unemployment and not receive the
correct treatment Homeless
homelessness, which could lead and/or avoid people are
admitted to
to more health implications3,4. medical attention
hospital more often
altogether
due to health
complications

Health services may

not be equipped to look
after those with
disabilities appropriately

3. https://academic.oup.com/hsw/article-abstract/13/2/145/711415
4. https://www.huduser.gov/Publications/Pdf/Homeless_Symp_07.Pdf#page=153
COVID-19 AND DISABILITY
– COVID-19 has further highlighted the fact that people with disabilities face poorer
health outcomes.
– Around one-quarter (25%) of people with disabilities who were receiving medical care
before the pandemic indicated they were receiving treatment for only some of their
conditions (compared with less than 1 in 10 (7%) non-disabled people)5.

5. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/coronavirusandthesocialimpactsondisabledpeopleingreatbritain/july2020
COVID-19 AND DISABILITY
– An online sentiment analysis
showed that of online
conversations regarding
disability and COVID-19,
61% were negative, and only
4% were positive.

– Most frequently used keywords

online were:
- Life’s hazards
Countries where disability and COVID-19 are discussed most frequently on social media

- Complexity
- Death
- So hard for disabled people
- Danger
- Burden

Search carried out in September 2020, for mentions between 22 March 2020–September 7 2020
COVID-19 AND DISABILITY
– You often hear about certain ethnic
minority groups being more likely to die
from COVID-19, but rarely do we hear about
the impact on people with disabilities.
– This social listening analysis highlighted
that people are frustrated by the lack of
understanding and awareness.
– Common conversations express concerns
about a post-lockdown world for people
with disabilities (e.g. fewer public toilets
open for people with Crohn’s disease).
People fear the pandemic has increased
the disability-inequality gap.

This generated large reach and engagement

COVID-19 AND DISABILITY
– People feel that the healthcare system helps
others at the expense of people with disabilities.

– This tweet shows frustration surrounding the

rush to find a potential treatment for COVID-19.
– A number of existing, approved treatments have
been tested for the treatment COVID-19. This
has led to medicine shortages for those who
need the treatments for other conditions.
– People are concerned that COVID-19 is being
too heavily prioritised and others, including
those with disabilities, will suffer.
 OF CLINICAL TRIALS
DISABILITY AS A SIDE EFFECT
– When conducting social listening analysis on
keywords such as ‘disability’ and ‘clinical trials’,
several posts discuss concerns regarding
negative side effects that can occur from
clinical trials.
– There is continuous outrage over Pfizer’s
unapproved clinical trial which caused disability
in children in Africa only 24 years ago.
– The second most frequently used hashtag
was ‘Africa’.
– A negative perception of pharmaceutical
companies has been demonstrated at large.
EXCLUSION IN CLINICAL TRIALS
– Most people with ID could have
– Research has found that only 6 (2%) of
300 randomly chosen studies clearly
included people with intellectual disability
(ID). Over 90% of studies were designed in
ways that would automatically exclude
persons with ID from participating.
participated in at least 70% of the studies
with simple accommodations and/or minor
procedural modifications.
EXCLUSION IN CLINICAL TRIALS
– Some people expressed disappointment by the lack of diversity of clinical researchers and
staff members. It is more apparent than ever that the healthcare system needs advocates
who have a disability to be apart of clinical trial teams.
– Although there are minimal posts in this area, when people do post, they generate large
engagement; people are passionate about this inequality.
– A recent report also highlights that clinical trials with more women investigators attract
more women patients in heart failure clinical trials6.

This thread generated

a big reaction:

6. https://www.news-medical.net/news/20200817/Women-investigators-can-attract-more-women-patients-in-heart-failure-clinical-trials.aspx
LANGUAGE AND CLINICAL TRIALS – Similarly, people expressed concern
over the language used by researchers.
– This further highlights the need for
more cultural safety training in
healthcare settings. Cultural safety
refers to the ability to understand,
communicate with and effectively
interact with people across different
groups (ethnic minorities, women,
elderly, people with disabilities). This
training could improve accessibility
by ensuring people with disabilities
feel reassured and understood
within healthcare.
– This training is important for not
only for doctors and nurses, but
clinical research staff as well.
CONCLUSION
What we have found
People with disabilities are impacted more
negatively by COVID-19 compared with
other members of society, yet there is a
lack of knowledge surrounding this.
People with disabilities feel overlooked in
healthcare decisions, which has been
made worse since the pandemic.
People express frustration at the
language used by healthcare professionals
regarding disability.
There are generally negative perceptions
of clinical trials.
Future implications
The COVID-19 pandemic has highlighted
how crucial it is for healthcare services to
listen to frustrations from the disabled
community, in order to build relationships
and encourage engagement.
Cultural safety training in healthcare
settings is essential to increase engagement
from people with disabilities and to improve
understanding of healthcare staff.
More education on the benefits of clinical
trials is needed to encourage people with
disabilities to take part.
 demanddiversity.co

couchhealth.co

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