Do patients need to read research?
BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7402.1307 (Published 12 June 2003) Cite this as: BMJ 2003;326:1307All rapid responses
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The Cochrane database could prove useful to many as suggested, but
the kind of peer reviewed UK research I'm hoping to read has yet to
manifest itself.
Having discounted all efforts that had gone before, The MRC Review of
Autism Research, Epidemiology & Causes, December 2001 goes on to
suggest (1) "..there are several achievable steps that could be taken in
the near future to enhance services and research for autism spectrum
disorders" and further notes "Encourage the research community to develop
high quality research proposals for funding that address the key issues
for research identified in this report, in particular case-definition; the
roles and interplay between genetic and environmental risk factors; causal
pathways and mechanisms; and new approaches to treatment and perhaps
prevention"
a) Did anyone have any high quality proposals for funding?
b) Did you get the funding?
c)....and....?
Regards MCF (still hopeful in 2003)
(1) MRC Review of Autism Research: Epidemiology and Causes December
2001 page 55 /item 247
Competing interests:
None declared
Competing interests: No competing interests
Sir:
The Cochrane Consumer network is a not-for-profit organization aimed
to "help people make well-informed decisions about health care". It
produces summaries of Cochrane Reviews in a clear language, avoiding
technical words (or provinding clear explanation for these words). It has
also a section, writen in non-technical language, about the major designs
of medical research.
The informatin are posted in a website (http://www.cochraneconsumer.com)
with free access. Such initiative can help patients to become better
informed to participate in the decisions regarding themselves.
Competing interests:
None declared
Competing interests: No competing interests
Fourteen years ago I was 'just a Mom', not yet a doctor as I am now.
I felt my two year old son was being raised like a chicken on antibiotics
fully 50% of the days of his life because of recurrent Acute Otitis Media
and Otitis Media with Effusion. Travel to the UK alerted me that the
needed duration of treatment depended on where the infected ear resided.
Worse yet consultation with Ear, Nose and Throat specialists left me
unconvinced. Why grommets for a two year old with startlingly precocious
speech? Weren't my sister's earaches 35 years prior treated with a
comforting hot water bottle? Something did not make sense.
With trepidation I breached the great wall: the medical literature.
It was hard to read the stuies but it was easy to see what was absent. The
studies a Mom would want. 'Hot water bottle' versus antibiotics of
different durations versus grommets in relation to speech development and
dreaded infectious extention. Now I know that is outcomes research; then
it was common sense.
Indeed, a government sponsored practice guideline published years
later stated, "The development of recommendations for OME is complicated
by a lack of sufficient data about the most important outcomes." (1)
Importantly, one beautiful study from the Netherlands suggested a
predominantly benign natural history for the overwhelming majority of OME
(2).
Armed with this knowledge (and more) I chose a treatment with
dramatic success: dietary change. Coincidence or cure? There was no
evidence; responsibly done there was no risk.
As the author states, often the most important studies have not been
done. Witness HRT. Who better to declare, "The emperor has no clothes'
than the uninitiated. Or am I being nostalgic?
1. Agency for Health Care Policy and Research. Otitis Media with
Effusion in Young Children: Clinical Practice Guideline Number 12.
2. Zielhuis et al. Analysis and Presentation of Data on the Natural
Course of otitis media with effusion in Children. International Journal of
Epidemiology. 1990;19:1037-1044.
Competing interests:
None declared
Competing interests: No competing interests
Regarding the editorial comment contained in issue 7402 of the BMJ
focussing on Patient involvement and expertise on their own and family
illnesses...I felt it might be appropriate to offer a comment on managing
autism beyond the experience or accepted practice for many Gps and
paediatricians.
Regardless of Autisms' basis be it genetic
pre-disposition or environmental insult or perhaps as
some would suggest via a growing body of international
research, a combination of factors; there are multiple
reasons for carers and in some cases the person with
ASD to familiarise themselves with past, current and
ongoing research.
We do this in the hope of ameliorating the symptoms,
behaviour and improving the quality of life enjoyed by
those with this diagnosis. It is shameful that an area
that has accumulated so much political baggage should
have have become mired in inactivity.
It is not as suggested just a potential intellectual
exercise, or in search of evidence for current
diagnosis and treatment received via a practioner, but
all too often as a method reported as successful by
many parents and carers in alleviating the underlying
health problems of ASD which are not as yet effectively
managed by any other agency.
In effect we do become experts, but usually in a field
of one subject on which to trial varied approaches
with the sensitivity bourne of caring.
Interestingly the academic researchers in this area
are quite amenable to discussing their interest and
results with those who would use that information in a
direct practical manner....the traditional barriers
between scientific endeavour and immediate application
appear to be diminishing...we haven't time to wait for
the squabbles to be resolved regarding reproducible
findings and their implications for health policy on a
grander scale.
Regards
Maddalena Feliciello
Competing interests:
None declared
Competing interests: No competing interests
I would like to applaud Richard Smith’s article "Do patients need to
read research?" His short piece succinctly reminds us of the importance of
strengthening capacity among those who need to comprehend research in
order to make informed decisions.
While his article focuses on patients, I believe we should include
all stakeholders in this process of understanding research, be they
consumers of health care, clinicians, policymakers, funders, or
researchers from other disciplines. Making sense of the massive
quantities of information of varying quality is a daunting task even for
the skilled researcher. This is further compounded by the confusion
brought about when “experts” do not concur on a common interpretation of a
given study.
I am a researcher for the Global Health Council, a not-for-profit
organization with a diverse membership comprised of health-care
professionals and organizations that include NGOs, foundations,
corporations, government agencies and academic institutions that work to
ensure global health for all. A key element of our research program is to
promote a better understanding of evidence-based approaches to health care
and facilitate a dialogue between researchers, policy makers and
practitioners. We do this through web and paper-based resources (including
summaries of systematic reviews), workshops and old fashioned word-of-
mouth.
As we cannot do this alone, we urge other researchers to proactively
initiate dialogue with decision-makers, including consumers about
research. Knowledge is power — however, knowledge can also be
exclusionary if not shared by all who need it.
Thank you for your journal’s dedication to global health issues.
Competing interests:
None declared
Competing interests: No competing interests
In his piece entitled "Do patients need to read research?", Dr. Smith
gives some guidelines to the uninitiated reader on assessing research. He
gives broad directions for the evaluation of a research paper. I would
like to suggest, however, that more important than reading one research
paper is interpreting the results in the context of what is previously
known on the topic.
For example, there are some patients who get excited about a new
therapeutic option but who do not appreciate its role in the bigger
picture. I have no problem with patients reading research since it allows
for discussion with the patient at a higher level. But it is sometimes
difficult to convince a patient that a particular treatment is not right
for them because of X or Y, when they may have already convinced
themselves of potential benefit.
Competing interests:
None declared
Competing interests: No competing interests
Patients do need to read research
This (1) is an excellent article giving tips for both doctors as well
as patients on reading research work. Patients should be encouraged to
read medical literature as well as publish in medical journals for various
reasons. Firstly, it will help in better understanding of the disease they
are suffering from and the current trends in the management of the
condition and helps them choose the management option most appropriate to
them when the doctor offers it to them. They will be familiar with the
medical terms and makes the consultation with the physician/surgeon more
informative and effective.
Secondly, they can provide valuable feedback and suggestions to the
progress of research from their first hand experiences; after all, they
are the beneficiaries of medical research. At the same time, they should
be aware of misleading information available on the internet. It is
analogous to us browsing the internet looking for commercial products with
the specifications suited for our needs. Patients should get a guided
access to the material they are looking for since it involves personal
health and it could potentially harm them if misguided. The current
endeavor for universal accessibility of all the medical literature is a
step in the right direction but the means to achieve this is under debate
(2).
References:
1.Richard Smith. Do patients need to read research? BMJ
2003;326:1307. (14 June)
2.Delamothe T, Godlee F, Smith R. Scientific literature's open
sesame? BMJ 2003;326: 945-6. (3 May)
Competing interests:
None declared
Competing interests: No competing interests