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PATIENTS FORUM
ANNUAL CONFERENCE 2002 - PRESENTATIONS
"Involvement
of black and minority ethnic service users in health research" - Professor
Mark R.D. Johnson, Mary
Seacole Research Centre,
Centre for Evidence in Ethnicity, Diversity & Health, De
Montfort University
______________________________________________________
I’d
like to begin with a brief quote from a report called ‘Involving
Users: Improving the delivery of healthcare’ – this was published in
1999 by the Cabinet Office and National Consumer Council, but to no
great fanfare of trumpets: it was about a study done in Leicester, and
some useful lessons.
·
Most
people think that black and minority ethnic communities are ‘hard to
reach’ but we did not find it difficult to get them involved. Groups
were generally easy to identify although not all were easy to contact.
-------------
(OHP
1)
There
is still a long way to go
…
they had spoken to researchers before but the researchers had never come
back to them….
These
people (sic) are likely to
remain sceptical until they see some action
‘Hard
to Reach’
‘raised
issues we had not anticipated’
Building
relationships takes time … it is important to persevere
-------------
·
The
people we spoke to raised issues we had not anticipated ….
(A
few more quotes on the overheads – how do these differ from reports
from white, majority, populations?)
Race
and ethnicity is a sensitive issue just now
(actually, always has been) – particularly perhaps while we are
thinking about the Damilola Taylor case or recent evens in towns like
Oldham, Burnley & Bradford. And because it is seen as problematic,
even when Patient and User forums are beginning to make some headway,
there remains a risk that black and minority ethnic concerns may remain
ignored (hopefully
not – see Damyanti Patel’s workshop this afternoon…. and hope that
many of those attending it will not be from minority groups)
There
are some specialist sources of information – and recently more data
has become available - we can see that there are real health
differentials that require addressing.
There
have also been a number of well-intentioned initiatives, some dealing
with ethnic-minority specific issues such as sickle-cell disease and
thalassaemia, others seeking to make more generic services accessible to
particular minority groups, including the Bengali community, refugees,
and women, for example!
The
problem has been that most of these have been short-term one-off events
and rarely under the control of BME communities and users. Indeed, some
of the earlier ones – and indeed some not so long ago – have been
seen as very paternalistic, or at best, of ‘creating’ mechanisms for
Black or Asian user involvement rather than stemming organically from
that constituency.
It
may be a question of control and of (what sociologists call) power
relationships, which doubly disadvantage BME consumers, who are not
always as articulate and plugged in to patient representative bodies and
processes as we might like to believe.
Consequently,
in our research – a survey of ‘user involvement’ in health service
research, we came up with a sort of hierarchy of involvement of BME
consumers in health service research:
-------------
(OHP
2)
Involving
Users: Improving the Delivery of Healthcare
1999
- Cabinet Office and National Consumer Council
A
‘ladder’ of participation
Consultation
&
Dissemination
ß
Steering
Groups
ß
Fieldworkers
and Research Assistants
ß
Professional
Investigators
ß
Partnership
ß
Project
Originators & Sponsors
-------------
Consultation
(token) / Dissemination (seldom) / Steering Groups (costs)
Fieldworkers
and Research Assistants (only way –but side benefits too – SARM) /
Professional Investigators (self-interest – but it does matter!)
v
Partnership
(Lottery, EHU funding expectations)
Project
Originators & Sponsors (rarely! good if found and seldom cited)
Where
to find all this? – problem: most projects are
Nasty
Brutish & Short
lack
of central register
lack
of consistency in describing, or including ethnicity
short-term
funding, rarely for peer-refereed publication
many
VOs and Patient-oriented groups appear not to monitor, or even
explicitly adopt a ‘colourblind approach
lack
of institutional memory – not into the EvidenceBase
Grey
Literature - role
of CEEDH
--------------------
OHP3
Why
Involve BME Patients and Users?
(and
Non-Users!)
v
Access
v
Diversity
v
Sensitivity
v
Language
v
Expectation
and action
v
Profile
v
Because
it is Good Practice
------------------------
Verstehen
– grey or not, qualitative understanding
Developing
relationships with new constituencies and widening choice for the
majority
Awareness
of Diversity in the mainstream
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