ABSTRACT
New Information and Communication Technologies are increasingly present in the daily lives of people and institutions globally. The information they convey may need to be updated, complete, correct, or deliberately untrue. We live in a context of information mayhem. Health-related information like this can harm individuals and society. Some alternatives have been put forward to address this issue. This article discusses how online health information quality assessment and website certification can serve in confronting information disorder. It presents a methodology for assessing the accuracy of online information following the updated and scientifically proven information from evidence-based medicine. It analyzes the case of visceral leishmaniasis: one of the most prevalent neglected diseases in the world. Following this method, a tool with indicators was built, and the websites of international non-governmental organizations and the Ministries of Health of Brazil and India were evaluated. The results show that all the evaluated websites obtained at most 50% compliance with the indicators used.
KEYWORDS
Online access to information; Internet portal, patient; Evaluation study; Leishmaniasis, visceral; Neglected diseases
Introduction
Digital media are pervasively present in the daily lives of people and institutions globally11 Pe reira Neto A, Barbosa L, Flynn M. Prefácio da edição brasileira - Há décadas em que nada acontece. Há semanas em que décadas acontecem. In: Pereira Neto A, Flynn M, organizadores. Internet e saúde no Brasil: desafios e tendências. 1. ed. São Paulo: Cultura Acadêmica; 2021. p. 7-18.. The large volume of information they convey may need to be updated, complete, incorrect, or with the deliberate intention of misleading the interlocutors in a context of ‘informational disorder’22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017.. Wardle and Derakhshan22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017. present this concept, as they consider the expression ‘fake news’ imprecise to describe the phenomena related to the pollution of information in which it is immersed. These authors affirm that this ‘informational disorder’ would be subdivided into three types, namely:
Dis-information. Information that is false and deliberately created to harm a person, social group, organization, or country. Mis-information. Information that is false but not created to cause harm. Mal-information. Information that is based on reality and used to inflict harm on a person, organization, or country22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017.(21).
In health, information with these characteristics can affect well-being or cause harm to individuals and society. On the other hand, quality online information from a reliable, up-to-date, scientifically based, and understandable source can play a fundamental role in self-care practices, lower service costs, disease prevention, and health promotion. Citizens will know and possibly adopt the preventive measures recommended by science with it. They will be able to know where, when, and why to perform certain diagnostic tests and receive possible and necessary medical care. Thus, assessing the quality of health information available on the internet can be one of the strategies to combat ‘informational disorder’33 Pereira Neto A, Ferreira EC, Domingos RLAMT, et al. Avaliação da qualidade da informação de sites sobre Covid-19: uma alternativa de combate às fake news. Saúde debate. 2022; 46(132):30-46..
One of the methods for carrying out this assessment is based on establishing a set of criteria and indicators. Criteria are standards that underpin evaluation. Each consists of indicators that measure the degree of compliance between the information made available and considered correct and adequate in each criterion44 Pereira Neto A, Paolucci R. Avaliação da qualidade da informação de saúde na internet: análise das iniciativas brasileiras. In: Pereira Neto A, Flynn M, organizadores. Internet e saúde no Brasil: desafios e tendências. 1. ed. São Paulo: Cultura Acadêmica; 2021. p. 257-291..
Paolucci and Pereira Neto55 Paolucci R, Pereira Neto A. Methods for evaluating the quality of information on health websites: Systematic Review (2001-2014). Latin Am J Develop. 2021; 3(3):994-1056. identified five criteria most used to assess the quality of information on health websites from a systematic review. These criteria were already identified by Eysenbach et al.66 Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. Jama. 2002; 287(20):2691-2700. and Zhang, Sun, and Xie77 Zhang Y, Sun Y, Xie B. Quality of health information for consumers on the web: A systematic review of indicators, criteria, tools, and evaluation results. J. Assoc. Inform. Science & Tech. 2015; 66(10):2071-84. in their respective systematic reviews. The first criterion is technical: it observes, for example, whether responsibility and reference are attributed to the information provided and whether the sites’ creation and updating dates are provided. The design criterion assesses whether the layout and colors facilitate navigation in the virtual environment. The scope verifies whether the site has all the topics relevant to the theme addressed. Readability is the criterion that assesses the understanding level of the text available online88 Pereira Neto A, Paolucci R, Daumas R, et al. Avaliação participativa da qualidade da informação de saúde na internet: o caso de sites de dengue. Ciênc. saúde coletiva. 2017; 22(6):1955-68.. Information accuracy was defined by Eysenbach et al.66 Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. Jama. 2002; 287(20):2691-2700. as the observation of the degree of agreement between the information offered in the virtual environment and the best evidence generally accepted by medical practice.
Paolucci, Pereira Neto, and Nadanovisky99 Paolucci R, Pereira Neto A, Nadanovisky P. Avaliação da acurácia da informação em sites de saúde: Métodos para construção de indicadores baseados em evidência. Em Questão. 2021; 27(4):137-188. found that the criterion that assesses information accuracy is widely used by studies that propose to assess the quality of health information on the internet. They concluded that the authors of the studies used the consensus among specialists in the study area or the reliable scientific bibliographical production to evaluate the information’s accuracy. None of these systematic reviews identified a study that had resorted to scientific evidence systems or evidence-based medicine to construct health information accuracy indicators.
Paolucci, Pereira Neto, and Nadanovisky99 Paolucci R, Pereira Neto A, Nadanovisky P. Avaliação da acurácia da informação em sites de saúde: Métodos para construção de indicadores baseados em evidência. Em Questão. 2021; 27(4):137-188. propose that the indicators for evaluating the accuracy of the information available on health websites be based on the best and most current scientific evidence available, updating the definition by Eysenbach et al.66 Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. Jama. 2002; 287(20):2691-2700. for the criterion. To this end, they recommend employing the theoretical Pyramid 5.0 model of evidence-based health care to identify evidence and pre-evaluated guidelines. This model follows the reflections introduced by Alper and Haynes1010 Alper BS, Haynes RB. EBHC pyramid 5.0 for accessing pre appraised evidence and guidance. Evidence-based Med. 2016; 21(4):123-5., who suggest a five-level evidence organization model.
The first level would include empirical studies on a particular theme or health problem. They present results hard to generalize, as they are limited to analyzing specific cases. The second includes systematic reviews, which are investigations conducted on a wide range of scientific papers, with predefined methods to systematically identify problems and relevant results published on an issue or topic. The systematic review verifies the quality of these works, extracts the data, and synthesizes the results. In this case, the conclusions can be generalized better. The third level includes systematically derived recommendations (guidelines), a set of rules or guidelines on a particular subject. They aim to establish a standard of conduct in the face of concrete problems. The fourth level of the pyramid includes the synthesized summaries for clinical reference, which should serve as a reference for clinical practice as they provide updated evidence summaries. It is the most appropriate level in the search for practical guidelines for evidence-based health care1111 Paolucci R. Avaliação da qualidade da informação em sites de saúde: indicadores de acurácia baseada em evidência para tuberculose. [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2020..
According to Paolucci1111 Paolucci R. Avaliação da qualidade da informação em sites de saúde: indicadores de acurácia baseada em evidência para tuberculose. [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2020., who evaluated online information sources, DynaMed Plus is currently the best tool for seeking evidence-based guidance. It is a platform developed by EBSCO, an American database company, which aims to provide synthesized summaries for clinical reference in English. It stands out for its quality and way of displaying the results1111 Paolucci R. Avaliação da qualidade da informação em sites de saúde: indicadores de acurácia baseada em evidência para tuberculose. [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2020.. Its main objective is to provide health professionals, researchers, and students with quality health information based on updated evidence, easily located in the database. Access to the platform is not free: it is necessary to pay an annual subscription to access the available content, the amount of which varies according to the user’s profile.
Considering this setting, this paper assesses the accuracy of online information on visceral leishmaniasis. To this end, indicators were built from the best and most current scientific evidence available on DynaMed Plus about this disease.
Visceral leishmaniasis was chosen because it is a neglected disease. This parasitic disease mainly affects the poorest populations and is associated with social inequality and low funding from the pharmaceutical industry. It is one of the most prevalent neglected diseases in the world, where more than 1 million new cases are identified annually. It is an endemic disease in 76 countries. However, more than 90% of the global cases occur in India, Bangladesh, Sudan, South Sudan, Ethiopia, and Brazil. In 2019, Brazil concentrated 97% of disease cases in Latin America. It can cause death if untreated, constituting an essential public health problem1212 Santana RS, Souza KB, Lussari F, et al. Cases and distribution of visceral leishmaniasis in western São Paulo: A neglected disease in this region of Brazil. PLoS Negl Trop Dis. 2021; 15(6):e0009411.,1313 Anversa L, Tiburcio M, Richini-Pereira V, et al. Human leishmaniasis in Brazil: A general review. Rev. Assoc. Med. Bras. 2018; 64(3):281-289..
Online information quality indicators were used to assess the content on visceral leishmaniasis available on four websites: two from international Non-Governmental Organizations (NGOs) and two linked to the Brazilian and Indian Ministries of Health, respectively – two of the six countries with the highest incidence of the disease1313 Anversa L, Tiburcio M, Richini-Pereira V, et al. Human leishmaniasis in Brazil: A general review. Rev. Assoc. Med. Bras. 2018; 64(3):281-289.. The present study is, therefore, part of the field of ‘misinformation’ as mentioned by Wardle and Derakhshan22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017., as sites linked to institutions with international credibility that play a relevant and recognized role in the field of health will be evaluated. However, their information may be outdated, incomplete, or incorrect, although not intended to cause harm.
The page dedicated to leishmaniasis on the Doctors Without Borders (MSF) website was selected because it offers open-access informative content about the disease in Portuguese and is from an internationally recognized non-profit organization. Furthermore, it aims to provide health care in areas with humanitarian crises and raise public awareness of such situations (https://www.msf.org.br/o-que-fazemos/atividades-medicas/leishmaniose).
Choosing the NGO Drugs for Neglected Diseases initiative (DNDi) page for evaluation followed a logic similar to the previous choice. We selected this page because it offers free informative content in Portuguese about leishmaniasis. It is an internationally recognized organization that aims to develop safe, effective, and affordable treatments for millions of vulnerable people affected by neglected diseases (https://www.dndial.org/doencas/leishmanioses).
Thus, selecting would facilitate the identification of the accuracy level of the information provided in Portuguese by organizations that are, to some extent, associated with the issue of visceral leishmaniasis. Choosing the Brazilian Ministry of Health page for evaluation was related to the search to identify the accuracy level of the information provided by a governmental body in one of its official communication channels. The Brazilian Ministry of Health has the ‘Health from A to Z’ website, a glossary in which open access information is presented in Portuguese on prevention, symptoms, diagnosis, and treatment of prevalent Brazilian diseases and the main themes, actions, public policies, and prevention and health promotion programs of the Brazilian government. It contains a link dedicated exclusively to visceral leishmaniasis, selected for the accuracy assessment (https://www.gov.br/saude/pt-br/assuntos/saude-de-a-a-z/l/leishmaniose-visceral).
Finally, we selected the Indian government open-access website on leishmaniasis available in English. We aimed to identify the accuracy level of the content provided by a governmental body in one of the countries most affected by the disease worldwide. The website was designed, developed, and hosted by the Center for Health Informatics (CHI) under the National Institute of Family Health and Welfare (NIHFW), an agency of the Ministry of Health and Family Welfare (MoHFW) of India (https://www.nhp.gov.in/disease/kala-azar-leishmaniasis).
The sites selected for analysis are, thus, associated with recognized institutions, which have, in different ways, an essential international role in leishmaniasis in two countries that are among the most affected by this disease globally. Due to their public recognition, internet users can access their electronic addresses to obtain information about this disease. These sites can be seen as credible sources of health information due to their institutional affiliation.
We shall present how the indicators were constructed and which indicators will compose the tool used for evaluation next. Then, we shall discuss the results obtained in evaluating the selected sites and their relationship with coping with “informational disorder”22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017.(10).
Methods
This study started with constructing a tool to assess the accuracy of the visceral leishmaniasis information. After this stage, the available content about the disease was evaluated on the four sites chosen for analysis.
The visceral leishmaniasis page available on DynaMed Plus (https://www.dynamed.com/condition/visceral-leishmaniasis) was used as a reference to build the evaluation tool. This page is structured in different sections, which address different dimensions of the disease. Indicators were built to assess information accuracy from its data. These were grouped into four dimensions of the health-disease process1414 Organização Pan-Americana da Saúde. Módulos de Princípios de Epidemiologia para o Controle de Enfermidades. Módulo 6: controle de enfermidades na população. Brasília, DF: Organização Pan-Americana da Saúde; Ministério da Saúde; 2010.: prevention and control, symptom and diagnosis, transmission, and treatment. The set of indicators made up the evaluation tool.
The evaluation stage consisted of verifying whether the information displayed in the indicators, built from the synthesized summaries, is available on the evaluated sites classified as follows: complete, incomplete, erroneous, or absent. Thus, this paper presents two results: the proposed evaluation tool that can be used in assessing online environments on visceral leishmaniasis and evaluation of the four sites conducted in January and February 2022.
Results
Evaluation tool
Initially, observe the construction process of the transmission indicators. The following text is found in the ‘Transmission’ section on the Visceral Leishmaniasis page of DynaMed Plus:
Female phlebotomine sandflies are the only vector for transmission. Noiseless, 2-3 mm long arthropods (about one-third the size of mosquitoes). [...] Most active from dusk to dawn, although some species are active during daylight hours. [...] dogs serve as the main reservoir for Leishmania infantum (also known as Leishmania chagasi)1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... .
The information on the transmission of leishmaniasis available on DynaMed Plus was transformed into six indicators, namely:
The female sandfly is the only known transmission vector for leishmaniasis;
This transmitting insect is most active from dusk to dawn, although some species are present during the day;
This transmitting insect has the color of sand (sandfly);
This transmitting insect is silent;
This transmitting insect measures 2-3 millimeters, much smaller than a mosquito;
Dogs are the primary source of infection (reservoir).
The sections ‘History and Physical’ and ‘Diagnosis’ of the Visceral Leishmaniasis page of DynaMed Plus were consulted to build the symptoms and diagnostic indicators. The following information is included regarding clinical symptoms:
Infection may be asymptomatic. If present, symptoms may develop weeks to years after the sandfly bite. Typical signs and symptoms include fever, anorexia, weight loss, abdominal fullness, and tenderness [...]. Illness may progress over weeks to months1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... .
Regarding the clinical diagnosis, the DynaMed Plus page informs that splenomegaly (increased spleen) and hepatomegaly (increased size of the liver) are ‘consistent signs and symptoms’. This content about symptoms and diagnosis was transformed into the following indicators:
Leishmania sp. may be asymptomatic;
Symptoms may take weeks or even years to become evident after being bitten by the transmitting insect;
Typical symptoms of the disease include fever, loss of appetite (anorexia), weight loss, loss of sensation, and swelling in the abdominal region, especially the spleen, and liver;
The disease can progress over weeks or even months.
The following information on prevention and control in endemic areas was located in the ‘Prevention and Tracking’ section of the DynaMed Plus page:
[...] avoid outdoor activities in endemic areas, especially from dusk to dawn; minimize exposed skin by wearing long-sleeved shirts and long pants while outdoors; if possible, use insecticide repellents on skin and clothing; if sleeping area not adequately screened or air-conditioned, use bed nets with holes small enough to prevent the entry of sandflies (most effective if treated with insecticide)1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... .
[...] in areas with endemic transmission control canine urban reservoirs mosquito-proof meshes in dog kennels insecticide-impregnated dog collars serological surveying of dogs (humane euthanasia may be indicated if positive) residual insecticide spraying environmental sanitation1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... .
DynaMed Plus content refers to prevention and control in endemic areas. The above information served as the basis for the following indicators:
In endemic areas:
Avoid outdoor activities, especially from dusk to dawn;
Wear long-sleeved pants and shirts when outdoors;
Use repellents on your skin and clothes;
Use mosquito nets with holes small enough to prevent the entry of the transmitting insect if the sleeping area does not have a screen or air conditioning. Screens are most effective if treated with insecticides;
Vaccinate dogs and use insecticide-impregnated collars;
Perform canine euthanasia in positive cases;
Spray walls with residual action insecticide for environmental sanitation.
DynaMed Plus includes the following information regarding the treatment size:
Treatment should be guided by expert consultation. Treatment decisions may vary by infecting species, geographic location, local resistance pattern, patient characteristics, and availability of medications. All patients should be treated to treat visceral leishmaniasis [...]. Liposomal amphotericin B is generally considered the first line due to a higher cure rate and lower side effect profile compared to older agents1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... .
The following indicators were built for the treatment of leishmaniasis from this information:
A doctor must supervise the treatment;
Treatment may vary according to the infecting species, geographic location, the possibility of the parasite resisting the drug administered, the patient’s characteristics, and the availability of drugs;
Liposomal Amphotericin B is the first-line medication adopted for patients with leishmaniasis due to its higher cure rate and a lower rate of side effects than other previously used drugs.
A tool consisting of 20 indicators was created, 6 for transmission, 4 for symptoms, 7 for prevention and control, and 3 for treatment. This list could be much higher if other updated and scientifically proven information had been included by evidence-based medicine in DynaMed Plus.
For example, information regarding the different transmitting mosquito species, the vector’s behavior by region of the planet, and the parasite incubation period were not incorporated. Moreover, information on transmission through blood transfusion, intrauterine, bone marrow, solid organ transplantation, and needle sharing still needs to be transformed into indicators in the abovementioned tool. They were excluded because they are less common, according to DynaMed Plus. Some specific symptoms were not turned into indicators. In this case, the most available content for constructing indicators was restricted. DynaMed Plus also mentions different aspects to be evaluated during the clinical and laboratory test to make the diagnosis, besides detailed information on the drug treatment of the disease. This information was not transformed into indicators because it is technical and is intended, above all, for health professionals rather than for the general population.
The list of indicators could be even greater if a topic on breeding sites for the transmitting insect had been included. According to Benallal et al.1616 Benallal KE, Garni R, Harrat Z, et al. Phlebotomine sand flies (Diptera: Psychodidae) of the Maghreb region: A systematic review of distribution, morphology, and role in the transmission of the pathogens. PLoS Negl Trop Dis. 2022; 16(1):e0009952., mosquito vectors reproduce in an environment with decomposing organic matter or in animal breeding grounds. The ‘Visceral Leishmaniasis Surveillance and Control Manual’ from the Brazilian Ministry of Health1717 Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de Vigilância Epidemiológica. Manual de vigilância e controle da leishmaniose visceral. Brasília, DF: Ministério da Saúde; 2014. considers this information crucial for prevention and control in endemic areas and guidance in environmental management. However, an indicator containing this information was not included in the evaluation tool, as this topic is not identified in DynaMed Plus.
The 20 indicators in the tool gather what can be considered primary data, that is, information that every site on visceral leishmaniasis should include.
Evaluation result
The results will be presented following the abovementioned indicators, according to the four dimensions defined for leishmaniasis. We observed whether the correct and current information obtained through DynaMed Plus was complete (C), incomplete (I) or erroneous (E), or even if it was absent (A). Each answer was scored to better verify the result of the evaluation. Complete information received 10 points; incomplete ones, 5 points; and the absent or erroneous ones were not scored. The results of the transmission dimension are shown in table 1.
The MSF website states that the disease is transmitted ‘through the bite of infected sandflies’. The Ministry of Health of India website informs that ‘sandflies are small insects, about a quarter the size of a mosquito’. The DNDi page indicates that transmission is carried out by the ‘bite of different species of sandfly insect vectors’. In the first two environments, the female gender of the transmitting insect are not shown, although its subfamily (phlebotomine) is mentioned.
The Brazilian Ministry of Health website only highlights that the transmitting insects are small without comparing them with the size of mosquitoes or informing their approximate size. None of the four sites highlights the silent, nocturnal behavior of the insect.
According to the last report on the control of leishmaniasis published by the World Health Organization in 20101818 WHO. Control of the leishmaniasis: report of a meeting of the WHO Expert Committee on the Control of Leishmaniases, Geneva, 22-26 March 2010., dogs are the main reservoirs of visceral leishmaniasis. The document emphasizes that the control of canine visceral leishmaniasis is a task that must be adapted according to the local situation due to its complexity. Although less than half of infected dogs show signs of leishmaniasis, most of those called asymptomatic were infective for sandflies by xenodiagnosis. According to Donato et al.1919 Donato L, Lima Júnior F, Albuquerque R, et al. Vigilância e controle de reservatórios da leishmaniose visceral no Brasil: aspectos técnicos e jurídicos. Revista de Educação Continuada em Medicina Veterinária e Zootecnia do CRMV-SP. Conselho Regional de Medicina Veterinária. 2013; 11(2):18-23., these characteristics justify the importance of euthanasia of infected, symptomatic, and asymptomatic animals to control transmission, especially when considering the low parasiticidal efficacy of drugs used to treat dogs with visceral leishmaniasis.
Visceral leishmaniasis is endemic in Brazil, other countries of the American continent, and Mediterranean countries, and Leishmania infantum is the etiological agent. In these regions, dogs are reservoirs of the parasite in an urban setting. However, in India, visceral leishmaniasis caused by Leishmania donovani is an anthroponosis; humans are considered the only source of infection for vector sandflies; therefore, dogs are not reservoirs. For this reason, this indicator was not considered in this case1515 DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
https://www.dynamed.com/topics/dmp~AN~T1... . However, it seems surprising that there is no basic information about the transmitting insect on the Indian government website.
In the transmission dimension, compliance would be obtained if the evaluated site obtained 60 points, 10 points in each of the six indicators. In this first dimension, the results indicate low levels of compliance, especially between the websites of the two NGOs (table 1). Table 2 presents the results of the assessment in terms of symptoms and diagnosis.
The four web pages evaluated do not mention the disease’s possible asymptomatic condition. The MSF website states that the disease ‘manifests itself two to eight months after infection’. The DNDi website informs that ‘the incubation period is 10 to 14 days’. Both pieces of information need to be corrected according to DynaMed Plus parameters. This information needs to be included in the other two virtual environments.
Regarding typical symptoms, the MSF website mentions that they ‘demand tissue, lymph nodes, or spinal cord samples’. This information needs to be corrected if we follow DynaMed Plus parameters. The DNDi website contains an engraving that indicates ‘prolonged fever, spleen, and liver enlargement, substantial weight loss, and anemia’ as symptoms of the disease. The Brazilian Ministry of Health website includes weakness and reduced muscle strength and does not mention anorexia as a symptom of leishmaniasis. For this reason, this indicator needed to be completed.
None of the four sites informs the time of disease progression. MSF, DNDi, and the Brazilian Ministry of Health websites warn that the disease can be fatal if left untreated. The temporal evolution of the disease was absent in the four virtual environments.
In the symptoms and diagnosis dimension, full compliance would be obtained if the evaluated site obtained 40 points, 10 points in each of the four indicators. In this second dimension, the results indicate extremely low compliance rates in all evaluated sites. Table 3 shows the evaluation results regarding prevention and control in endemic areas.
None of the websites of the two NGOs display information about the behaviors that residents of endemic areas should adopt. The Brazilian Ministry of Health website provides two short videos on how to collar dogs with insecticide. It also mentions dog euthanasia. However, the website warns that this initiative ‘must be integrated with the other actions recommended by the Ministry of Health’. Superficially, using repellents ‘when necessary’ and ‘comfortable clothes and closed shoes’ is recommended. For this reason, this indicator was considered absent.
In the prevention and control dimension, compliance would be obtained if the evaluated site obtained 70 points. The information available on the Indian Ministry of Health website on this topic aligns with the assessment tool’s indicators for this dimension. However, the website only scored 50 points. This exceptionality is related to the fact that it is an anthroponosis in India, whereby dogs are not reservoirs of the parasite for the insect vector. For this reason, information on collar use and dog euthanasia would not be expected to appear on the website of the Ministry of Health in that country. Table 4 shows the results of the assessment in the dimension of treatment of leishmaniasis.
Only the Indian website mentions the doctor’s presence in the treatment. The information displayed on the website appears ‘indicative’; it is suggestive or serves as a sign of something. Furthermore, it concludes by stating: ‘you should see your doctor for the diagnosis and treatment’. None of the sites mention the possibility of treatment being different according to some variables. The information that Liposomal Amphotericin B is the first-line medication adopted for patients with leishmaniasis due to its higher cure rate and a lower rate of side effects is not explicitly found on any of the websites.
The MSF website states that ‘pentavalent antimonials are normally the first-line drug group’. The website of the Indian Ministry of Health shows the ‘drugs available for treatment’ and lists Sodium Stibogluconate, Pentamidine Isethionate, Amphotericin B, Miltefosine, and Liposomal Amphotericin B. For this reason, this information was considered incomplete on these two sites as it does not highlight Liposomal Amphotericin B as a first-line drug due to its higher cure rate and a lower rate of side effects.
The DNDi website states that patients with visceral leishmaniasis ‘need an oral, effective, safe, low-cost and short-term treatment’ without mentioning drug treatment. The Brazilian Ministry of Health website does not focus on treating this disease. He only informs that, ‘although serious, visceral leishmaniasis has treatment for humans. It is free and available in the Unified Health System (SUS) service network’.
In the treatment dimension, compliance would be obtained if the evaluated site scored 40 points. All of the sites reached a score of 15. This number suggests that primary information about the treatment of the disease in the analyzed virtual environments has low accuracy or needs to be present.
Table 5 gathers the results of the four previous tables. The first column refers to each of the evaluation dimensions. The second presents the total possible points if the information were per the indicators built with DynaMed Plus. The following columns display the results of each site evaluated in the four dimensions. In the end, the results were transformed into proportional indicators.
Final considerations
The study elaborated on some crucial issues in communication and health information. How can citizens identify the insect that transmits the disease if the Brazilian Ministry of Health website only highlights that it is small without providing further details? How can citizens prevent this disease if none of the four sites highlights the silent and nocturnal behavior of the transmitting insect? How can citizens know whether or not they are infected if information about the typical disease symptoms is practically missing from the four websites? Citizens living in endemic areas and accessing one of the websites of the two NGOs will not retrieve the information necessary to prevent and take care of themselves properly, as there needs to be more information on how to behave in this epidemiological context.
If they access the Brazilian Ministry of Health website, citizens’ fate will be similar, as they will not be oriented to avoid outdoor activities and wear pants and long-sleeved shirts.
As noted above, the information on visceral leishmaniasis in four critical virtual environments had low compliance rates concerning the scientific knowledge presented in the summarized abstracts for clinical reference, arranged in DynaMed Plus. In this case, most of the information made available is incomplete, erroneous, or absent, although the websites are linked to reputable institutions. We could not say whether the inaccurate information provided by these four sites was deliberately intended to deceive. However, the sites evaluated in this paper do not provide correct information. Erroneous or incomplete information can be the basis for misinformation, clearing the way to circulate false information.
Other studies33 Pereira Neto A, Ferreira EC, Domingos RLAMT, et al. Avaliação da qualidade da informação de sites sobre Covid-19: uma alternativa de combate às fake news. Saúde debate. 2022; 46(132):30-46.,44 Pereira Neto A, Paolucci R. Avaliação da qualidade da informação de saúde na internet: análise das iniciativas brasileiras. In: Pereira Neto A, Flynn M, organizadores. Internet e saúde no Brasil: desafios e tendências. 1. ed. São Paulo: Cultura Acadêmica; 2021. p. 257-291.,88 Pereira Neto A, Paolucci R, Daumas R, et al. Avaliação participativa da qualidade da informação de saúde na internet: o caso de sites de dengue. Ciênc. saúde coletiva. 2017; 22(6):1955-68.,2020 Paolucci R, Pereira Neto A, Luzia R. Avaliação da qualidade da informação em sites de tuberculose: análise de uma experiência participativa. Saúde debate. 2017; 41(esp):84-100.,2121 Pereira Neto A, López S, Almeida J, et al. Assessment of the quality of information on breastfeeding sites: notes on an experience. In: Silva P, Leite D, organizadores. Saúde coletiva: avanços e desafios para a integralidade do cuidado - volume 3. Guarujá: Editora Científica Digital; 2021. p. 114-27. with similar objectives reached the same conclusions. That is, this problem is not a privilege of this or that site or this or that disease or health problem. The quality of information on health websites is a problem identified in different virtual environments, a severe problem that should be addressed.
Another noteworthy issue
Eysenbach2222 Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820. mentions four strategies he calls ‘pillars’ for coping with false information. Although the target of this study was the accuracy of the information and not the deliberately misleading contents, the statements by Eysenbach2222 Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820. also contribute to thinking about the issue of informational disorder and the circulation of imprecise, outdated, or inaccurate information about health. The first coping pillar suggested by the author aims to facilitate and strengthen the accurate translation of knowledge from one audience to another. He says:
These knowledge translation processes are, perhaps, the main mechanisms where information becomes misinformation, as the interpretation of ‘facts’ is subject to multiple potentially influencing factors such as politics, commercial interests, selective reporting, and misunderstandings2222 Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820.(3).
The second pillar aims to refine and filter knowledge and verify facts. Eysenbach2222 Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820.(4) says,
on the science level, peer reviewing and publishing scholarly work is a method to constantly filter, refine, and improve the information generated by previous scholars.
The third pillar is geared toward building ‘eHealth literacy’. The author argues that ‘the user bears a significant part of the responsibility for selecting and filtering reliable health information’ in the information age.
The fourth pillar refers to ‘infoveillance’: surveillance capable of “detecting outbreaks of misinformation, rumors, falsehoods, to counter them with facts or other interventions”2222 Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820.(4).
While not explicitly mentioned, assessing the quality of information could be included in the second pillar, as it aims to refine and improve the information offered. Assessing the accuracy of health information available on the web is a global challenge, the importance of which has become even more evident with the COVID-19 pandemic.
This paper aimed to present an innovative method for assessing the accuracy of the information available on health websites. In the first aspect, innovation is associated with how similar evaluations have been conducted. The second innovative aspect is related to the fact that this work did not evaluate following the viewpoint of experts or manuals but based on evidence-based medicine. The evaluation method proposed here can be adapted to assess information content about other diseases and health conditions, which can bring meaningful results about the accuracy of the information that circulates online about other health topics.
Two initiatives have stood out globally regarding assessing online health information quality: Health On Net Foundation (https://www.hon.ch/en/) and Discern (http://www.discern.org.uk/). The former is a Swiss NGO that certifies health websites based on eight principles. Discern is an initiative of the University of Oxford. It is a questionnaire consisting of 16 questions, which provides users with a valid and reliable way to assess the quality of information available on a health website. None of these initiatives verifies the accuracy of the information; they need to check the level of agreement between the online content and the most current and correct scientific evidence.
Finally, an evaluation such as the one presented is not punitive but diagnostic. It allows managers of virtual environments to modify the content of the information made available or include other missing information. The same site would be re-evaluated later. The site will receive a certification if the information provided complies with the indicators. When searching on a certified website, the citizen would be confident that that information would be current and scientifically based. The certification of health websites by institutions of recognized respect by society is a strategic option to face the ‘informational disorder’22 Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017. because certified sites would be the informational environment that users could trust.
- Financial support: non-existent
References
- 1Pe reira Neto A, Barbosa L, Flynn M. Prefácio da edição brasileira - Há décadas em que nada acontece. Há semanas em que décadas acontecem. In: Pereira Neto A, Flynn M, organizadores. Internet e saúde no Brasil: desafios e tendências. 1. ed. São Paulo: Cultura Acadêmica; 2021. p. 7-18.
- 2Wardle C, Derakhshan H. Information disorder: toward an in-terdisciplinary framework research and policy making. E-book. Estrasburgo: Council of Europe; 2017.
- 3Pereira Neto A, Ferreira EC, Domingos RLAMT, et al. Avaliação da qualidade da informação de sites sobre Covid-19: uma alternativa de combate às fake news. Saúde debate. 2022; 46(132):30-46.
- 4Pereira Neto A, Paolucci R. Avaliação da qualidade da informação de saúde na internet: análise das iniciativas brasileiras. In: Pereira Neto A, Flynn M, organizadores. Internet e saúde no Brasil: desafios e tendências. 1. ed. São Paulo: Cultura Acadêmica; 2021. p. 257-291.
- 5Paolucci R, Pereira Neto A. Methods for evaluating the quality of information on health websites: Systematic Review (2001-2014). Latin Am J Develop. 2021; 3(3):994-1056.
- 6Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. Jama. 2002; 287(20):2691-2700.
- 7Zhang Y, Sun Y, Xie B. Quality of health information for consumers on the web: A systematic review of indicators, criteria, tools, and evaluation results. J. Assoc. Inform. Science & Tech. 2015; 66(10):2071-84.
- 8Pereira Neto A, Paolucci R, Daumas R, et al. Avaliação participativa da qualidade da informação de saúde na internet: o caso de sites de dengue. Ciênc. saúde coletiva. 2017; 22(6):1955-68.
- 9Paolucci R, Pereira Neto A, Nadanovisky P. Avaliação da acurácia da informação em sites de saúde: Métodos para construção de indicadores baseados em evidência. Em Questão. 2021; 27(4):137-188.
- 10Alper BS, Haynes RB. EBHC pyramid 5.0 for accessing pre appraised evidence and guidance. Evidence-based Med. 2016; 21(4):123-5.
- 11Paolucci R. Avaliação da qualidade da informação em sites de saúde: indicadores de acurácia baseada em evidência para tuberculose. [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2020.
- 12Santana RS, Souza KB, Lussari F, et al. Cases and distribution of visceral leishmaniasis in western São Paulo: A neglected disease in this region of Brazil. PLoS Negl Trop Dis. 2021; 15(6):e0009411.
- 13Anversa L, Tiburcio M, Richini-Pereira V, et al. Human leishmaniasis in Brazil: A general review. Rev. Assoc. Med. Bras. 2018; 64(3):281-289.
- 14Organização Pan-Americana da Saúde. Módulos de Princípios de Epidemiologia para o Controle de Enfermidades. Módulo 6: controle de enfermidades na população. Brasília, DF: Organização Pan-Americana da Saúde; Ministério da Saúde; 2010.
- 15DynaMed. Ipswich (MA): EBSCO Information Services. 1995. Record No. T113881, Visceral Leishmaniasis; [atualizado 2018 nov 30]. [acesso em 2022 maio 17]. Disponível em: https://www.dynamed.com/topics/dmp~AN~T113881.
» https://www.dynamed.com/topics/dmp~AN~T113881. - 16Benallal KE, Garni R, Harrat Z, et al. Phlebotomine sand flies (Diptera: Psychodidae) of the Maghreb region: A systematic review of distribution, morphology, and role in the transmission of the pathogens. PLoS Negl Trop Dis. 2022; 16(1):e0009952.
- 17Brasil. Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de Vigilância Epidemiológica. Manual de vigilância e controle da leishmaniose visceral. Brasília, DF: Ministério da Saúde; 2014.
- 18WHO. Control of the leishmaniasis: report of a meeting of the WHO Expert Committee on the Control of Leishmaniases, Geneva, 22-26 March 2010.
- 19Donato L, Lima Júnior F, Albuquerque R, et al. Vigilância e controle de reservatórios da leishmaniose visceral no Brasil: aspectos técnicos e jurídicos. Revista de Educação Continuada em Medicina Veterinária e Zootecnia do CRMV-SP. Conselho Regional de Medicina Veterinária. 2013; 11(2):18-23.
- 20Paolucci R, Pereira Neto A, Luzia R. Avaliação da qualidade da informação em sites de tuberculose: análise de uma experiência participativa. Saúde debate. 2017; 41(esp):84-100.
- 21Pereira Neto A, López S, Almeida J, et al. Assessment of the quality of information on breastfeeding sites: notes on an experience. In: Silva P, Leite D, organizadores. Saúde coletiva: avanços e desafios para a integralidade do cuidado - volume 3. Guarujá: Editora Científica Digital; 2021. p. 114-27.
- 22Eysenbach G. How to Fight an Infodemic: The Four Pillars of Infodemic Management J Med Internet Res. 2020; 22(6):e21820.
Publication Dates
- Publication in this collection
03 Apr 2023 - Date of issue
Jan-Mar 2023
History
- Received
11 July 2022 - Accepted
20 Dec 2022