INTRODUCTION

The Internet is offered in the current context as the first and main means of information for citizens (Marín-Torres et al; 2012; III Barómetro PIC, 2019; INE, 2019;), even ahead of the face-to-face visit to the doctor (cf. results of the 19th National Congress of Hospitals Technology, health system and citizenship in isanidad.com, January 27, 2015) becoming a “fundamental instrument of knowledge transmission in health” (Jiménez Pernett, et al., 2007, p. 44).

Its functions and use related to public health have already been the subject of study for several decades -cf. Fernández (1998) on the list of publications, databases, institutions and public bodies related to public health in the nineties- although, currently, the concern in the institutional (cf. Dirección General de Salud Pública de la Generalitat Valenciana, 2010), academic and social sphere lies in the type of information, especially in its quality, as well as the infoxication problem that exists in this regard (Navas-Martín et al., 2012).

The search for health information on the Internet is mainly associated with the diagnosis of an illness of the user or a direct relative and can be considered the first source which both consult after a medical visit. Thus, it is noted that 60.1% of Spaniards between 16 and 74 years of age have used the Internet to search for information on health issues in the last three months (INE, 2019). While this fact seems to be linked to education - users with a diploma, bachelor’s degree, master’s degree, university doctorate or equivalent are those population groups that use the Internet to locate information on health issues to a greater extent -

Source: Survey on Equipment and Use of Information and Communication Technologies in Households (INE, 2019).

In fact, in relation to the data provided by the INE for users in the period of the last three months and in comparison with the data provided in 2017, it can be noticed that the figures relating to illiterate users and with incomplete primary education increase significantly (from 9.9% to 21.1%) as well as users whose education corresponds only to Primary Education (which rises from 28.9% to 42.7%); a fact that could be due to the progressive access to the Internet by the entire Spanish population (according to the Internet audience data collected in the General Media Study, Internet access has increased from 77.3% of users in 2016 to 84.5% in the last wave of 2019). In the data of users who consult information on health issues corresponding to a higher education (diploma and/or equivalent, bachelor’s degree and/or equivalent and university doctorate), hardly any alterations are observed. This fact is significant for the purpose of understanding the profile of users who access the Internet in search of information related to health in general and in relation to the field of health specifically: information that clarifies doubts about cancer, treatments, symptoms, prevention, etc. That is to say that the person seeking information on cancer should be able to identify and reach the right source and, once there, be offered quality information and content that clarifies their doubts on this subject.

Source: Survey on Equipment and Use of Information and Communication Technologies in households (INE, 2019).

As stated by Conesa-Fuentes et al., (2010), “among the main advantages of the Internet, there are its great accessibility, updating, freedom of expression for patients, etc., while among the various disadvantages, the most notable is that the information contained on the Internet may not be reliable”. The diversity of sources and possibilities - scientific journals, institutional websites, virtual communities in forums or social networks (which are becoming increasingly relevant for seeking medical recommendations or advice, or comments on medication, as reported by Martín Fombellida et. al., 2014), etc. – they are an advantage for the citizen, but at the same time, there is a certain saturation, which becomes an obstacle to obtaining useful and legitimate information.

According to Kim and Xie (2017), the main barriers to access and use of web- based health information have to do with content readability and poor usability of eHealth-related sites, a problem that was already highlighted by Cline and Haynes in 2001.

To this deficiency in the presentation of information, it must be added the enormous volume of data available on the network, as well as their quality. This fact seems to make it essential to develop analysis protocols, beyond existing codes of ethics and conduct -HONCode, IHC (Internet Health Coalition), Health Information Technology Institute, DISCERN, MedPICS, WMC Project, CATCH II (cf. Ávila de Tomás et al., 2001)- that make it possible to identify the websites that offer quality information both in their content and in their presentation in a comprehensible way to users. While some authors point out that consumers

can deal with content on the Internet as they have previously done with other media (cf. Jiménez Pernett et al., 2007). However, the lack of identification of sources and authors or creators of information, or the inability of search engines to differentiate between portals or pages with valid information from others that are less reliable (cf. Mira, Pérez-Jover & Lorenzo, 2004), among other factors, suggest that the application of this type of codes, protocols and measures is becoming a necessity in the current context.

Therefore, as a starting point to improve the quality of health information on the Internet, this research proposes an analysis of the corporate websites of three Spanish institutions of recognized prestige -and diverse nature- in the field of cancer dissemination: the Spanish Association Against Cancer (AECC), the Spanish Cancer Patients Group (GEPAC) and the Foundation for Public Education and Training in Cancer (FEFOC). We propose the design of an analysis questionnaire based on a study of the scientific literature on the analysis of web pages, together with the SEO and SEM positioning of the websites under study in the Google search engine with the aim of identifying their possibility of contact with users who are looking for information related to this disease.

OBJECTIVES AND STARTING HYPOTHESIS

The analysis proposed in this research addresses, as indicated, both the usability of the websites of the three institutions under study and the type of information offered in each of them, with the aim of knowing the state of information on the web about cancer in Spain and identifying good practices in communication about the disease.

The specific objectives of the research are, firstly, to know the state of the issue of the proposals for the analysis of health web pages; secondly, to design a suitable questionnaire for the study of web pages of institutions working in the field of cancer; and, thirdly, to establish conclusions on the (informative) use that the three main cancer organizations in Spain (already referenced) make of their corporate web pages by applying, on the one hand, the designed questionnaire and, on the other hand, by offering a detailed analysis of the type of content that each of them addresses.

The research is carried out in the context of the year 2020 (the data is collected, specifically, during the months of January and February) and it is complemented with a bibliographic review for the elaboration of the state of the issue of publications of the last twenty years with the aim of establishing an in-depth review of the evolution experienced in the methodology and techniques used in the analysis of web pages (contents, design and navigability) and to create, from there, a methodological design of its own. The purpose is to create a model from which to indicate whether or not the institution has or has not such information or content, or respects the basic needs of design and navigability. Therefore, values related to the updating of communication (news on the web or publications in social networks) are not explored since this aspect would lead to the elaboration of not only quantitative but also qualitative research, which is not the aim of this initial

exploratory research, which will be used as a starting point for further studies.

Based on these objectives and the presented ideas, the following departure hypotheses are proposed:

1. Existing questionnaires for the analysis of health web pages are incomplete for the current analysis of institutional sites about cancer.

2. The web pages of three of the main Spanish cancer prevention and dissemination institutions show coincidence in content and services: they offer in-depth information on the disease, its types, detection and prevention, as well as information segmented by different types of audiences.

3. The communication of the functions and activities of the institutions is part of the web pages of the analyzed institutions.

4. The presence in social networks has become a mandatory action for this type of institutions.

5. The organizations under study offer a clear and immediate identification of their financing sources

6. Coincidence in the objectives of the corporate web pages related to cancer is noted

7. Certain complexity in the management of corporate web content is observed

8. The effectiveness in the positioning of corporate websites is reduced

STATUS OF THE ISSUE REGARDING eHEALTH INFORMATION

To proceed with the state of the question, a search was carried out in the Doyma- Elsevier search engine, Web of Science, Scopus and Google Scholar with the terms: cancer information internet, health information internet, information cancer internet, health information Internet and eHealth. This initial search also allowed an approach to other articles related to the subject, from which it can be drawn that the concern for the type of information published on the Internet on the various issues related to the field of health is a topic of current interest for researchers and academics, as well as for the social sphere.

From the obtained results, we first examined the literature review carried out by Conesa Fuentes and Aguinaga Ontoso (2009), which allowed an initial approach to the literature published on the object of study, it presents a selection of studies, codes of conduct and certification systems related to the evaluation of the quality of web pages with health information.

Secondly, several studies that focus on the use of the Internet to search for information on certain aspects related to health have been published. Among them, it should be highlighted the analysis by Jiménez Pernett et al. (2006), who identify the main trends in the use of the Internet as a source of health information, focusing on certain population groups such as adolescents, the elderly, women, health professionals and virtual communities of patients; analysing, in addition, the codes of conduct that have been proposed to improve the quality of websites with health contents or the proposal by Lima and Maza (2019) on the information needs of family members (focused on diseases of premature infants in neonatal

intensive care units, using Internet sources). Studies that analyze the influence of the search for information on the Internet on the doctor-patient relationship (Marín-Torres et al., 2012) are also noted, stating that “the Internet has the power to influence the way of thinking and achieve changes in lifestyles”. A third pathway of research is focused on official information carried out and published by journalists who are specialized in this thematic area (Saavedra Llamas et al., 2019).

Llinás et al. (2005), on their own, try to determine which characteristics are the most valued by Internet users of a health web page, observing that Internet users trust a page more if “after accessing it quickly and navigating easily, they can see that it is updated, that the information is complete and accurate, that it is presented in a visually attractive way and that it uses simple and understandable language”. Thus, it is noted that elements such as navigability, accessibility, design and aesthetics seem to be more important than the search for quality and reliability of the source.

In another order of results, there are some case studies that are useful for understanding the required needs of health web pages. In this sense, Arencibia Jiménez & Aibar Remón (2007) carried out an exploratory cross-sectional descriptive study of hospital web pages by preparing an evaluation questionnaire with the following criteria: accessibility, usability, interactivity, presented information, updating of contents, quality and information for the professional. The web pages of this sort of institutions are also addressed by Díaz Cuenca (2007), who offers a questionnaire with five groups of content in his study:1. General information on the hospital; 2. Information on the services portfolio; 3. Types of activities that are accessible through the web; 4. Web links typology; and 5. Ergonomics.

On the other hand, it is essential to specify those studies or proposals that analyze different instruments for evaluating health web pages. Thus, in relation to the parameters which are taken into consideration to approach the analysis of information in web spaces, it should first be mentioned Codina (2000) -a leading author in this field whose contribution has been accepted, among others, by Merlo Vega, 2003 or Robert Barrera et al., 2006- who proposes fourteen generic criteria for this type of analysis: 1. Quality and volume of the information; 2. Authorship: responsibility and solvency; 3. Readability and ergonomics; 4. Navigation and representation of the information; 5. Retrievability; 6. Interactivity/Computability;

7. Download speed; 8. Additional Services; 9. Luminosity; 10. Links’ quality; 11. Links’ updating; 12. Description, selection and evaluation; 13. Visibility; and 14. Auto description.

More specifically in the field of health, the e-Europe code must be mentioned, it contains the following dimensions: a) transparency and absence of clash of interests; b) authorship; c) protection of personal data; d) information updating;

Responsibility; and f accessibility

Núñez Gudás (2002) and Ramos Sánchez (2004) also provide a list of the most widely used criteria to evaluate the quality of health information resources

available on the Internet, including Caywood’s more generic proposal, which is focused on access, design and content; Smith’s criteria, which include scope, content, graphic and multimedia design, purpose, review, applicability and cost; as well as Tilman and Grassian (the first authors to introduce the topic of quality of information on the Internet); and the proposal of Jacobson and Cohen, who begin with authors with previous formulations and incorporate the following items: objectives (expected audience, the source); source (creator’s authority, address and e-mail), content (accuracy, balance, quality, range, updating, links) and style and functionality.

However, regarding the published literature on the topic, it is clear that different instruments have been developed to measure the quality of health websites in recent years. In this regard, Bermúdez Tamayo et al. (2006) point out that:

some instruments are used in the form of filters (which exclude pages that do not meet criteria), user guides (automated or not) and third-party accreditation seals. Other initiatives have focused on supplier self-regulation through self-applied quality seals.

Bauer and Deering (2009), Mayer, Leis and Sanz (2009) and Batalla Martínez (2009), among others, also discuss quality seals on web pages as an aid for the user -mainly non-expert-.

Thus, Bermúdez Tamayo et al. propose the design of a questionnaire to evaluate the fulfillment of the quality criteria of health websites and analyze their reliability. To this end, the criteria of the e-Europe 2002 code of conduct are taken into account and compared with those of the AMA, Summit, eHealth Code of Ethics, regulations and guidelines in force, and they consider the study of transparency and the absence of clash of interests, authorship, data protection, updating, responsibility and accessibility.1

Conesa Fuentes et al. (2010), on their own, evaluate the quality of general health information websites in Spanish, as well as the official websites of the health services of the different Spanish autonomous regions, using the Bermúdez- Tamayo et al. questionnaire as a departure point and making modifications. They observe that, in general, the quality of the web pages with health information is low, especially in reference to the quality of the information; however, the studies that evaluate the quality of the web pages focused on a specific disease (such as breast cancer) conclude that the quality is generally high. The proposal by Conesa Fuentes, et al. (2010) includes several content elements structured under the following headings: 1. Transparency2; 2. Personal data protection3; 3.

1 Formed by the items: 1.Transparency and absence of conflict of interest: responsible for the page, objective, audience and sources of financing; 2. Authorship: (sources and date); 3; Personal data protection; 4. Information updating; 5. Responsibility: contact address and qualification of authors in online consultations, editorial policy procedure and recommended links; 6. Accessibility: ease of finding content and searching, readability and accessibility for people with disabilities.

2 The transparency group includes: name of the person in charge; E-mail address of the person in

charge; objective of the website; target population; financing of the website

3 The heading Personal data protection consists of: Description of the form of personal data protection.

Accessibility4; 4. Authorship5; 5. Procedure for updating information; and 6. Page responsibility.6

In this list of authors who study the quality of health information on the Internet, Arcos-García (2012) establishes his analysis of the quality of health web pages in a specific case that of the human papillomavirus, applying an evaluation questionnaire again, based on the e-Europe 2002 code.

Among the most recent studies, the contributions of Fahy et al. (2014) can be found, among others, who conduct a review on the quality of health information for patients on the Internet, or Zhang et al. (2015), who conduct a systematic review of indicators, criteria and tools for the quality of health information on the web.

Thus, it is noted that most of the authors seem to agree on the relevance of certain aspects such as easy navigation, updating and accuracy of the information or identification of the source; however, the contributions of the consulted authors seem to indicate that users of this type of websites attach greater importance to aspects related to navigability, accessibility, design and aesthetics than to the quality and reliability of the source. Likewise, it is also relevant to add the proposals that focus on exploring the need for it to be precisely the healthcare professionals and the institutions themselves the ones who make the website recommendations (cf. Grau, 2017). However, given the behavior of the patient or family members who resort directly to the sources published openly on the Internet, it is important to analyze specific sources, starting in this proposal with corporate websites of associations specialized in a specific disease, institutions

-generally- in direct contact with medical specialists who should offer quality

information to the citizen.

METHODOLOGY

In order to proceed with the analysis of the web pages of the three cancer-related organizations in the sample, a web application is first used to evaluate web accessibility7, thus, identifying possible errors related to usability and accessibility.

4. By Accessibility, the authors refer to: ease of finding content; ease of searching; ease of reading; appropriate font size; appropriate language for the target audience; accessibility for people with disabilities.

5. Under the heading Authorship, the source of information of the documents and the date of publication are included.

6. The authors establish the following content items in the Responsibility section: Webmaster’s e-mail

address; On-line consultation; Information selection procedure; Link selection procedure.

For the current study, concretely, this app has been used:http://examinator ws of public communication, specifically in the case of local corporations (Molina Rodríguez Navas et al., 2015); as well as the analysis proposal and adaptation of the Infoparticipa Map proposed by Baamonde-Silva et al. (2017) for the analysis of corporate websites of Non-Governmental Organizations for Development.

Thereupon, our own proposal was developed, it includes a list of 32 content items that are structured around the following content groups (Table 1): 1. Information about the institution; 2.Inforamation about the cancer; 3. Help; 4. Sources of financing and partners; 5. Communication; 6. Social Media; 7. Accessibility; and

Update

As it can be observed in the proposal, the analysis is structured in eight content blocks, which allow addressing the different components of the institution: institutional identity (what the institution manifests it is) and institutional image (what the institution transmits), both are imaginary constructions based on declarative aspects and the institutional reality (what the institution is objectively) and institutional communication (what the institution communicates).

Based on the items contained in Table 1, which identify whether the evaluation parameter for the web pages under study is met (1) or not (0), the work can be completed with a content analysis of the pages based on specific aspects of the dimensions indicated above.

In addition to the internal analysis of the corporate websites, in the next phase of the study, an evaluation is also made from the point of view of their organic and advertising positioning, indicating with this parameter the possibilities of access to the referred websites from search engines, the main resource used by users to search for information on the Internet.

Source: Own elaboration.

RESULTS

Taking into account the above background and the proposed methodology, it can be proceeded to evaluate the websites of the three main non-governmental institutions related to cancer in our country. These are the Spanish Association Against Cancer (AECC), the Spanish Cancer Patients Group (GEPAC) and the Foundation for Public Education and Training in Cancer (FEFOC). The same dynamic of analysis was applied to the three of them, with the questionnaire already described in order to be able to carry out the subsequent content analysis.

Analysis of the corporate website of the Spanish Association Against Cancer (AECC

Firstly, it should be mentioned -in addition to the information contained in the table- that the AECC website (www.aecc.es) has other social networks, specifically Instagram. Be that as it may, sight should not be loss of the fact that the AECC is the institution, out of the analyzed three, with the greatest offline media presence

(both in paid advertising media and in the organization of awareness-raising

activities), so that, a priori, its website should contribute to this priority positioning.

Despite this, the analysis shows a corporate website with institutional information and a variety of content to get information on cancer. In this sense, it distances from static websites by incorporating updated information through news, publications, information on events and other news in a blog-like section (“Your health comes first”). It is also significant to note that the website includes various contact formulas, even enabling interactions between those directly or indirectly affected by cancer through the Community section.

On the other hand, according to the information provided, the objectives of this platform are to raise awareness of the disease and to attract sources of funding for the development of its activities. Thus, it could be understood that the website includes management elements similar to those that would be used in a commercial website. However, this fact does not seem to be confirmed, therefore eliminating linked options such as contact forms.

Continuing with regard to formal issues, it is clear that the established parameters for the evaluation of the web site have been clearly complied with in an orthodox manner. In fact, it confirms the professional management of this platform in a way that it is technically very effective. From another point of view, in terms of content, the absence of aspects related to disease prevention is striking. In addition, there is no information on the organization’s main sources of funding.

However, all these contents do not seem to be usefu to achieve organic positioning of the website in the Google search engine. It is not present in searches such as “cancer”, “cancer disease” or “types of cancer”, searches in which the National Cancer Institute or the American Cancer Society occupy the top positions. The direct search for the Spanish Association Against Cancer reveals the existence of SEM and SEO positioning, with a preferential ad for “AECC for families and patients; find the help you are looking for”.

Source: Own elaboration.

Analysis of the corporate website of the Spanish Cancer Patients Group (GEPAC

Unlike the AECC, the Spanish Cancer Patients Group (GEPAC) has a website (www.gepac.es) with an “informative” character. The contents related to the disease are prioritized over the institutional ones. In addition, the web site has variable and updated contents in this case. GEPAC has no external social presence and, in fact, its work takes place -precisely- during the process of the disease (where discretion is valued).

Source: Own elaboration.

The analysis shows an informative website of a purely informative nature and with dynamic (updated) information. The contents of the page are updated but they are not included in newsletters. The objectives of the website are to make advances in research on the disease and, once again, to obtain funding for its activities. However, it is clear that this is a website that can be identified as a content site, with great similarities to a blog.

In this case, it also includes the link to its different profiles in social networks and, in addition to Facebook, Twitter and YouTube, it is present on Instagram. Thus, it follows the trend of including this network in the communication plan in social media that is being carried out by mainly commercial companies, but also by other institutions or associations with a more informative purpose.

Continuing with regard to formal issues, the parameters established for the evaluation of the website are almost completely fulfilled once again. The management of this page is more complex as it is an informative website, which requires more monitoring and effort. In relation to the contents, the sources of

financing of the institution are not indicated either in this case.

As indicated in the previous section, this organization is not organically positioned in generic searches (“cancer”, “cancer disease” or “types of cancer”) and has not carried out SEM positioning for the organic web (no paid positioning is recorded). It is also important how this association presents itself through its website, its Facebook page and an additional page in which the URL changes and becomes www.somospacientes.com. This “division” of options makes positioning more complex.

5.3. Analysis of the corporate website of the Foundation for Public Education and Training in Cancer (FEFOC).

Regarding the Foundation for Public Education and Training in Cancer (FEFOC), more similarities with GEPAC than with the Spanish Association Against Cancer (AECC) are found. Once again, the informative nature of the website (https:// www.fefoc.org/) prevails over the corporate data. This page could almost be described as crowdfunding since, within this informative character, the priority is the information on the means of financing. Precisely this information has a stable and permanent character, focusing on the objective of obtaining funding for its activities. The second objective of the FEFOC organization is to make advances in research on this disease. FEFOC has no social presence either.

Once more, the website has static information with low content updating. The contents do not include an agenda nor do they develop a newsletter. In this case, the website has more similarities with a sales website than the previous two.

Source: Own elaboration.

In terms of formal issues, it is the one that most complies with the parameters established for the evaluation of a website. The management of the website is simple in terms of information content management, though it is more elaborated in terms of fundraising. Focusing exclusively on content, the creation of microsites for the different projects linked to the FEFOC is particularly interesting.

Finally, the organic positioning of the foundation is direct and concrete and even linked to publicity in the national media.

CONCLUSIONS

Firstly, it should be pointed out that the current study was based on an analysis of the three websites as a starting point for improving the quality of health information on the Internet, focusing on the concepts of legibility of the content, usability, the

lack of identification of sources and authors of the information and the inability of search engines to differentiate between portals or pages with valid information and others that are less reliable. In relation to this main objective, the first of the obtained conclusions is that the three analyzed websites do not initially present these problems although they should continue to work on offering information in a constant and updated manner.

The work carried out in relation to cancer information on the Internet has led to progress in terms of the feasibility of the specific questionnaire on corporate websites. This questionnaire is a fundamental analysis tool to evaluate the performance of the web pages linked to information on this disease. Fieldwork carried out on the web pages of the three main Spanish associations provided a broad index of compliance with the 32 established parameters: AECC, 29; GEPAC, 29 and FEFOC, 26.

This level of compliance indicates that there is a professional, conscious and probably strategic work when developing these websites. In fact, the content analysis that was carried out shows signs of professional management of these spaces. In all of them there is institutional content, but this loses weight as fundraising becomes more important. Despite this fact, there is a coincidence of contents and services in the three websites. All these organizations have an important presence in social networks but have less weight in terms of SEO positioning.

The objectives pursued by these organizations fully coincide but their approach is not the same. The AECC shows a more corporate and institutional image, a fact that is reflected in its campaigns and actions and even in the fact that it has decided to use SEM positioning resources.

On its part, GEPAC goes a step further both in obtaining the necessary funding and in informing about the disease. The GEPAC is less direct in fundraising than the FEFOC, which has developed its contents very much for this purpose. The most important fact is that none of these three organizations report their main sources of funding on their websites (although they do provide information on sponsors and collaborators).

The updating of informative content is low (although with differences among the three associations) and hardly any references to communication management are made -only the AECC- so there are no contacts or specific materials for the media. This fact is directly related to the social presence of the analyzed institutions and to their SEM and SEO positioning.

All of the above finally confirms the possibilities of the Internet as a means of disseminating health contents and, more specifically, in relation to cancer. The searches that are carried out by users must, however, be targeted, since the work of these organizations is not oriented towards positioning. In any case, the analysis model developed demonstrates its effectiveness in assessing this type of content and allows more extensive research to be carried out in the future.

As indicated in the section corresponding to the research objectives, only the updating of the web page is evaluated, without dwelling on carrying out an in- depth qualitative analysis of the updating of other communicative elements such as the recent publication of news on the web or the publications, also updated and with high regularity on the social networks considered (Twitter, Facebook, etc.). The proposal, in this sense, allows information to be obtained on the contents of the corporate websites of a sample of cancer associations in Spain in order to provide a starting point for further studies. Thus, it would be interesting to continue the current research through an analysis of aspects related to the presence in social networks of these institutions, assessing their age, frequency of publication, users’ engagement, type of published content, etc.; so that the existence of a communication strategy behind them is delimited, if applicable.

REFERENCES