Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Take research in context
- Peter J Hosein (15 June 2003)
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A (statistically) significant impact
- Colleen K Murphy (18 June 2003)
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Accessible Information?
- Maddalena C Feliciello (23 June 2003)
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Mom's Common Sense
- Edith Jaffe (24 June 2003)
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Cochrane Consumer´s Network can help patients
- Otavio Clark (27 June 2003)
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Re: Cochrane Consumer´s Network can help patients
- Maddalena C Feliciello (28 June 2003)
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Patients do need to read research
- Srinivas B S Kambhampati (10 July 2003)
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Peter J Hosein, SHO Trinidad, West Indies.
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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 |
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Colleen K Murphy, Research Associate Global Health Council, 1701 K Street, NW, Suite 600, Washington, DC 20006 USA
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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 |
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Maddalena C Feliciello, parent and carer home and school
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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
Competing interests: None declared |
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Edith Jaffe, Clinical Instructor in Medicine Strong Memorial Hospital, 601 Elmwood Ave, Rochester, NY 14642
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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 |
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Otavio Clark, Head of Oncology service Hospital Celso Pierro, 13000
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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 |
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Maddalena C Feliciello, Parent Leeds
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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 |
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Srinivas B S Kambhampati, Registrar, Dept. of Orthopaedics Oldchurch Hospital, Romford, Essex RM7 0BE
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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 |
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