Memorandum by the Royal National Institute
for Deaf People
1. We're RNID, the charity working to create
a world where deafness or hearing loss do not limit or determine
opportunity, and where people value their hearing. We work by
campaigning and lobbying, raising awareness of deafness and hearing
loss, promoting hearing health, providing services and through
social, medical and technical research.
2. There are more than nine million people
in the UK who are deaf or hard of hearing; this means that one
in seven people in Britain have some sort of hearing loss. This
number will continue to rise as the "baby boomer" generation
begin to pass the age of 60. There are around 50,000-70,000 British
Sign Language users.
3. Hearing loss and deafness is usually
measured by finding the quietest sound someone can hear using
tones with different frequencies—which are heard as different
pitches. Using this test we break deafness down into four categories;
— Mild Deafness—those who have some
difficulty in following speech, mainly in noisy situations,
— Moderate Deafness—those who have
difficulty in following speech without a hearing aid,
— Severe Deafness—those who rely
a lot on lipreading, even with a hearing aid, and
— Profound Deafness—those who are
profoundly deaf and who communicate by lipreading or by use of
BSL.
What is the overall objective of publicly-funded
science and technology research?
4. The overall objective of publicly-funded
science ought to be to improve quality of life through technological
advances and improved healthcare. Research can benefit the economy
by lowering healthcare costs and strengthening business.
Are existing objectives and mechanisms for the
allocation of public funds for research appropriate? If not, what
changes are necessary?
5. Existing objectives and mechanisms for
allocating public research funds currently favour areas with a
high critical mass of researchers. In medical research these tend
to be areas associated with high rates of mortality (eg cancer
and cardiovascular disease). Conditions associated with low mortality
rates, yet high levels of disease burden are often neglected.
6. Hearing loss is a prime example of this.
It affects nine million people within the UK and, with an ageing
population, is projected to be one of the top 10 leading
causes of disability adjusted life years (DALYs) globally by 2030.[120]
Already, hearing loss is estimated to cost the UK economy £13 billion
in lost earnings.[121]
However, despite this significant economic and social burden only
about 1 per cent of the Medical Research Council's (MRC) budget
was directed towards hearing research in 2007-08.
7. More needs to be done to prioritise medical
conditions associated with high levels of disease burden, particularly
those currently being under funded. Initiatives to build critical
mass in research should be directed towards these areas to ensure
that they can compete effectively for funding in the future.
8. Eligibility criteria for public research
funding needs to more actively encourage participation by large
charities. Large charities are often not eligible for UK public
research funds or full European funding at the same level as universities
or smaller companies because they are not designated as research
organisations or Small and Medium Enterprises (SME). However,
large charities often have in-house research groups able to undertake
research projects of national interest or external research partnerships
with academics that can deliver substantial research agendas.
How are science and technology research priorities
co-ordinated across Government, and between Government and the
relevant funding organisations? Who is responsible for ensuring
that research gaps to meet policy needs are filled?
9. A major problem in the UK is the lack
of academic clinical researchers linked to basic research departments
to drive translational research. This is a particular issue for
hearing research. The establishment of the Office for Strategic
Coordination of Health Research (OSCHR) provides an excellent
opportunity to better coordinate basic and clinical research,
and we welcome initiatives from the National Institute for Health
Research (NIHR) to strengthen clinical research, eg the UK's first
Biomedical Research Unit in Hearing, which opened in 2008. However,
it is vital that such initiatives are built upon and expanded.
10. Many areas of medical research are multidisciplinary,
yet the existing units tend to have a narrow research focus. For
example, the Biomedical Research Unit in Hearing is focussed on
the auditory brain with no provision for molecular or pharmacological
approaches to tackling hearing loss. The Government must continue
targeting funding at under resourced areas of clinical research.
How is publicly-funded science and technology
research aligned and co-ordinated with non-publicly funded research
(for example, industrial and charitable research collaborations)?
How can industry be encouraged to participate in research efforts
seeking to answer societal needs?
11. The UK's reliance on charitable funding
to support national medical research is far too high and needs
to be addressed. The Wellcome Trust funds around £600 million
worth of medical research each year, which is comparable to the
MRC's total annual budget. The British Heart Foundation invested
£72.3 million in research in 2007-08, almost four times
as much as the MRC's spend on cardiovascular research.
12. This reliance on charitable funding
to complement core public funding makes it difficult for researchers
investigating diseases and conditions which are not traditionally
supported by large medical research charities. For example in
2008, the UK's hearing research charities spent only 15p on research
for every person with hearing loss compared to £29 by
the British Heart Foundation for every person living with heart
disease and £166 spent by Cancer Research UK for every
person living with or beyond cancer.
13. This situation is exacerbated for conditions
such as hearing loss, where there is lower public awareness of
the impact that medical research can have compared to life threatening
conditions such as heart disease and cancer. In the last five
years RNID has had to turn down 73.4 per cent of the good applications
for research funding that we have received, as we are unable to
provide the over £9.5 million that this research required.[122]
See appendix A for more information.
14. For such neglected areas, public funding
bodies need to work in partnership with relevant medical research
charities to build capacity and provide an overarching funding
strategy to develop new therapies. It should not be left to the
voluntary sector to support research that will underpin the future
health and economic prosperity of the nation.
15. The UK's pharmaceutical industry invests
around £3 billion a year on Research and Development
and plays a key role in the translation of basic research into
medicines to benefit society. However, there are few incentives
for the pharmaceutical and biotechnology sectors to invest in
new streams of Research and Development, where the markets are
not yet established. Commercial entities tend to avoid unproven
markets that carry with it a perception of high risk, yet it is
precisely these markets that offer the greatest societal need
as there are simply no real treatments available. Public funding
needs to be better aligned to support translational research that
is perceived as too risky for commercial investors.
16. Government-backed initiatives to encourage
industry into neglected areas of healthcare Research and Development
are also needed. RNID has researched and published a series of
market reports on different types of hearing loss that provide
companies with essential information on market size, segmentation,
value, and background biology. These reports have been extremely
helpful in promoting hearing loss as a viable market to investors,
pharmaceutical and biotech industries. By working with patient
groups representing neglected areas and market research organisations
the Government could support the production of such reports to
encourage commercial investment in research into neglected conditions.
September 2009
120 Mathers and Loncar (2006). Projections of global
mortality and burden of disease from 2002 to 2030. PLoS Medicine.
3(11), e442. Back
121
Evaluation of the social and economic costs of hearing impairment.
October 2006, Hear-it AISBL. Back
122
Good applications are defined as receiving an average peer review
score of four or higher on a scale of 0-6 during our external
peer review process, where four is defined as "good, with
some original and timely research that will be conducted in a
scientifically robust way. Outcomes will be of some interest to
the field." Back
| 
