Patient Education and Counseling

Lunedì, 13 Luglio 2015
The Web Babel Syndrome
The number of individuals actively seeking health informationthrough the Internet is growing worldwide because it offersendless possibilities, both in medical and research fields. TheInternet sites are often lacking of adequate information concerningdisease complications and aftercare [1]. Designers of patients’electronic health record portals need to recognize that a patient’sinteraction with a computer is just an extension of the patient–physician relationship, and systems must be built to be as flexibleas possible to accomplish the same goals [2]. In order to address theproblem of a medical search engine, tailored for non-expertmedical information seekers, several Internet based systems havebeen developed.
MedicoPort, a search engine built to retrievemedical information from the Internet, and available for anybodywho wishes to perform a health related web search, is an example[3]. Wikipedia represents an interesting tool since it is an onlineencyclopaedia that relies upon quality articles, published in 31languages, and can be considered a prominent source of onlinehealth information, compared to the other online providers [4].MEDLINE represents one of the most valuable and high qualitytools as it allows to get access to 20 million citations from health,life science and medical journals, online books and other newssources [5]. In 2002, a survey of 4530 people in Europe and theUnited States showed that 32% of Europeans and 43% of Americanspreferred to use health web sites, sponsored by BBC and Yahoo, forhealth information [6]. We have described this, sometimesobsessive, information seeking behaviour on the World WideWeb (WWW), as the ‘‘Web Babel Syndrome’’, due to theheterogeneous and misleading information supplied by theInternet. The expression 00Web Babel Syndrome00 explains theconcept of a continuous, compulsory, excessive and sometimesobsessive searching behaviour, using a tool that cannot alwaysprovide the patients with the information they need, but may bemisleading, leaving them in a confusionary state.The expression 00Babel Syndrome00 has been already introducedby us in the 90s and it referred to a lack of communication thatleads the patient, especially when affected by multiple synchro-nous pathologies, to receive a heterogeneous number of prescrip-tions from different specialists, without planning the patient’shealthcare adequately [7]. In this letter we analyze the growingimportance of the medical second opinion (SO) to face theimpending 00Web Babel Syndrome00. In 1999, The Institute ofMedicine report cited a medical error as the cause of death in some40,000–98,000 Americans each year [8] supporting once more theconcept that a further consultation or specialistic SO may be usefuland benefit the patient. The expression SO has been widelyreported in the fields of histology [9,10] and pathology [11–19]where the diagnosis is often difficult and is strongly based on thehealthcare professionals’ experience. SO on histological specimensis a routinary daily procedure, performed in anatomic pathology practices and it plays a key role in providing the patient with themost accurate diagnosis [20]. As to surgical pathology specimensand CNS biopsies, major differences between the original and thereviewed diagnosis in 1.4–5.8% of the cases have been reported,supporting the hypothesis that either the patient’s diagnosis or histherapy could be improved by implementing a process of routinesecond review [21–28].SO is particularly useful in some conditions:
1.rare types of cancer in which recent advances have taken place;
2. when it is vital that the opinion should come from dedicatedexpert team on a selected problem;
3. when a radical therapeutic option, with a high morbidity andpotential mortality risk, is being recommended, but with somedoubts about its benefits;
4. when doubtful conflicting opinions on the best managementhave been given to the patient;
5. when the patient cannot accept that nothing more can be done;
6. when the doctor-patient communication has broken down;
7. when a new drug or technique is available for the patient’sspecific condition and its use is limited to specific medicalcentres;
8. when litigation against the primary treatment centre is pending.
A study [21] reports the outcome of uniform SO reviews at theJohns Hopkins Hospital showing that:
(1) 6171 cases were reviewed and the SO surgical pathologydiagnoses issued resulted in 86 (1.4%) major diagnosticchanges;
(2) misdiagnosis of the serosal surface lesions (9.5%) and thefemale reproductive tract (5.1%) were statistically more likelyto occur.
A pilot study [29] on SO teleconsulting in an outpatient settingat the Department of Dermatology, University of L’Aquila,L’Aquila, Italy, in collaboration with the Department of Derma-tology, Medical University of Graz, Graz, Austria, used a store-and-forward (SAF) web based system. The objective of this study wasto assess the value of teleconsultation, as an addition to theconventional face-to-face visit, in patients with unusual anddiagnostically difficult dermatoses. In 10 of 33 cases (30.3%), thecorrect diagnosis was made using teleconsultation only. Thisstudy shows an example of how SO teleconsulting can be aneffective support in the diagnosis of numerous challenginginflammatory and neoplastic skin diseases. The good ethical procedure states that the patient is supposed to notify to his firstdoctor the reasons of diagnosis or treatment failure. Unfortunately when, after a few attempts to achieve an effective treatment,the patient dissatisfaction reaches the edge, a barrier rises between the patient and the doctor who finds himself frustrated by the failure of the relationship with his patient. In this situation,the patient starts seeking a SO to try to find new solutions toimprove his health or reach a better quality of life. A possiblesolution to save the doctor–patient relationship could be to start ajoined second look consultation, run further clinical or diagnostictests or try new therapeutic solutions together. If we consider thatmany specialists can be eligible for a SO consultation, private andpublic hospitals, clinics and practices should organize audit teamsable to screen the SO requests sending them to the right specialistsin order to guide the patient, giving him the adequate logistic andorganizational support and permitting him to receive the bestpossible care. That is why we suggest the opportunity to introducea new ‘‘Second Opinion Medical Clinic’’ (SOMC) where medicalconsultations, diagnostic and therapeutic health advise can besupplied to patients who need a medical support. A SOMC issuitable to receive and analyze the specialists’ consultations on acase by case basis. A SOMC cannot be built without taking intoaccount the issue of the patient problem solving, starting from thespecialist’s experience, using the web consultation, but alsoevaluating and using the public and private healthcare resources,available in the geographic area where the patient lives. Inaddition, the SOMC officer has to follow the patient during hisrecovery route, giving him adequate counselling, either by phoneor email, until he fulfils his goals. The SOMC staff has to includeone or more skilled and trained biologists or biotechnologists whocan support the clinicians. The SOMC has to face multipleemergent clinical problems and needs the availability of a widediagnostic panel. The biologist, who holds a bachelor of scienceplus a clinical lab oriented master, has, in our opinion, thenecessary scientific background to work, side by side, with aclinical team, not only being directly involved in the use of thediagnostic instrumentations, but also keeping the contacts withspecialistic diagnostic centres to monitor the quality of theresults. He may increase the quality and efficiency of the SOMC,holding the responsibility of the clinical researches and casereports to be published on peer reviewed medical journals too. Heis also responsible for a continuous update on new drugs that arecurrently undergoing phase 1 or 2 clinical trials, in order to obtainthem from research centres or drug-manufacturing companies, ifsome patients require them. A continuous web screening of publicand private centres and specialists should be done to fulfil thepatients’ requirements, on the basis of quality, scientific level andspecialistic field. A trained nurse, dedicated to meet the patients,organize the medical consultation and taking care of the patients’follow up monitoring, will be necessary to achieve a full SOMCservice profile. We think it is fundamental to keep the familydoctors or the previously caring doctors informed of the incomingmedical strategies, involving them in the diagnostic andtherapeutic new steps. It will represent a key awareness policyfor the optimal management of each complex case. Regarding thecosts, the honorary should be on the basis of the patient’s financialresources using, as far as possible, the facilities of the NationalHealthcare System. It is important to keep in mind that a SO beforea major pathology based therapeutic choice may be worth thefinancial effort as it significantly improves the quality of care [30].The SOMC is going to be a modern approach to emerging healthproblems, either for minor or major conditions and diseases,aiming at counterbalancing the patients’ self-performed medicaland surgical consultations on the web and the blind approach tospecialists and clinics.
Conflict of interest statement
The authors certify that there is no conflict of interest with anyfinancial organization regarding the material discussed in themanuscript.
The authors contributed equally to this work. This article wasnot supported by grants.
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