[Versió catalana] [Version castellana]

Aurora Vall Casas , Concepción Rodríguez Parada

DENEA Research Group
Professors at Faculty of Library Sciences and Documentation of the University of Barcelona

auroravall@ub.edu, crodriguezp@ub.edu

Abstract [Resum] [Resumen]

Aim: The paper examines the current situation of recognition of patients' right to information in international standards and in the national laws of Belgium, France, Italy, Spain (and Catalonia), Switzerland and the United Kingdom.

Methodology: International standards, laws and codes of ethics of physicians and librarians that are currently in force were identified and analyzed with regard to patients' right to information and the ownership of this right. The related subjects of access to clinical history, advance directives and informed consent were not taken into account.

Results: All the standards, laws and codes analyzed deal with guaranteeing access to information. The codes of ethics of both physicians and librarians establish the duty to inform.

Conclusions: Librarians must collaborate with physicians in the process of informing patients.

1 Introduction

The debate on patients’ right to be informed on their health status and treatment began in the mid-20th century in the United States, where these rights have now been fully consolidated and are an example for the rest of the world. The current interest stems from several factors: the increase in chronic diseases and the progressive ageing of the population, the interest of physicians in sharing responsibility for the decisions taken, and society’s incipient demand for high-quality information on health subjects. In addition to the ethical aspects, there is a clear economic factor at play: informed patients are active workers in their process of recovery because they are more responsible for their complaints and treatments. This leads to reductions in the health costs of the public administration and insurance companies (Roth, 1978).

La Caixa Foundation commissioned the DENEA research group to carry out a worldwide study of current experiences related to offering educational and leisure services to hospitalized patients through the use of information and communication technologies (Rodríguez; Vall, 2004). The researchers later studied the involvement of public libraries in the creation, management and maintenance of these services (Rodríguez; Vall, 2005). Finally, they studied how the patients of a hospital exercise their right to information (Rodríguez; Vall, 2006a) and considered whether it was necessary to create a special area for this service (Rodríguez; Vall, 2006b). The work carried out led them to study the way in which patients exercise their right to be informed on their condition and on the treatment to be given in several countries European Union in western Europe (Rodríguez; Vall, 2006c, 2008).

This paper examines three fundamental areas of patients' right to information. From a psychological viewpoint it considers the benefits of informing patients of their health status. From a legal and regulatory viewpoint, it considers how this right is established by national and international laws, and from an ethical viewpoint it considers how it is established in codes of ethics of physicians and librarians. Finally, some conclusions are presented on how librarians can collaborate with health care professionals in providing information to patients.

2 Methodology

This study is based on an analysis of international standards and national legislation on the recognition of patients' right to information in Belgium, France, Italy, Spain (and Catalonia), Switzerland and the United Kingdom, and the codes of ethics of physicians and librarians in these countries. The countries were selected as being representative of the geographic, linguistic, cultural and sociological diversity in western Europe. Catalonia was included in order to add a regional perspective.

The analysis focused strictly on patients’ right to be informed and the establishment of the owners of this right. Related subjects such as patients' right not to be informed, access to medical history, informed consent and advance directives were therefore not taken into account. The documentation consulted (international standards, national laws and codes of ethics that are currently in force) was obtained by consulting the associations, institutions and bodies that drew them up. There is no single source for consulting the legisltaion of the countries analyzed.

3 The right to information: the current situation

3.1 The psychological framework

For some time physicians and psychologists have been investigating methods that mitigate the negative effects that patients suffer as a result of their condition. One of the most widely used strategies is psychological preparation. This seeks to achieve the well-being of the patient through information. Several studies have shown that providing patients and their families with full, high-quality information reduces their anxiety, so in general they achieve a better and more rapid recovery and are more collaborative during the treatment period (Ortigosa; Méndez, 2000). If this information is to achieve the desired effects, aspects such as the patients' cognitive and emotional development, their previous experience of life and their attitude towards the condition must also be taken into account.

The growing awareness that information increases quality of life and the constant progress of medicine have also led patients and their families to demand fuller information on their health status in order to conserve their dignity and, if possible, take part in decision-making on subjects that affect them directly: The users expect [...] understandable and truthful information that allows them to face their process with dignity, the removal or palliation of avoidable pain and suffering, the sensation that each action, each test, each intervention, is justifiable according to their own needs and no other factor, [...] the guarantee that they receive care in equitable conditions and, above all, that their right to take decisions on their own lives, their own pain and their own condition is respected. The patient wants, needs and expects to be treated as a person rather than a case (Hernández, 1998).

Despite the increasing awareness of both health workers and patients, and the recommendations of the sectors involved, patients still tend to lack appropriate medical information on their condition.

3.2 The regulatory and legal framework

The international standards, national laws and codes of conduct that were analyzed are presented in Table 1. Extracts from these documents referring to patients’ right to information are presented in Table 2.

3.2.1 International standards

In 1994, the World Health Organization Regional Office for Europe (WHO/Europe) adopted A Declaration on the Promotion of Patients’ Rights in Europe, which seeks to reaffirm fundamental human rights in health care and to promote respect of the patient as a person. It also seeks to reinforce the relationship between the patient and health care providers, to encourage the active participation of patients in their treatment and to humanize the assistance they receive. Article 2 states: Patients have the right to be fully informed about their health status, including the medical facts about their condition; about the proposed medical procedures, together with the potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis and progress of treatment. […] Information must be communicated to the patient in a way appropriate to the latter’s capacity for understanding, minimizing the use of unfamiliar technical terminology.

In 1997, the Council of Europe approved the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine. Its aim is to achieve the harmonization of the laws of the member countries, which must include in their legislation the principles expressed, such as respect for the dignity of human beings and for the fundamental rights and freedoms of the individual, including the patients' right to information: Article 5. – General rule. An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it. This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks. The person concerned may freely withdraw consent at any time. Article 6. – Protection of persons not able to consent. 1 ... an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit. 2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorization of his or her representativ e…The opinion of the minor shall be taken into consideration as an increasingly determining factor in proportion to his or her age and degree of maturity. 3. Where, according to law, an adult does not have the capacity to consent to an intervention because of a mental disability, a disease or for similar reasons, the intervention may only be carried out with the authorization of his or her representative ... The individual concerned shall as far as possible take part in the authorization procedure.

In its Charter of Fundamental Rights of the European Union, of 2000, the European Union states that the free and informed consent of the patient must be respected, according to the procedures laid down by the law of each country.

In the Ottawa Charter for Health Promotion, of 2000, the WHO simultaneously incorporates the concepts of information to patients and education for health: Health promotion supports personal and social development through providing information, education for health and enhancing life skills. By so doing, it increases the options available to people to exercise more control over their own health and over their environments, and to make choices conducive to health. The Ottawa Charter considers that health is not only the absence of illness but also the acquisition of healthy habits that help people to lead a full life. In order to acquire these habits one needs education and information. In this context, UNESCO and the International Federation of Library Associations and Institutions (IFLA) defend the role of libraries and their professionals in the process of educating and informing citizens in general, and patients and their families in particular, by means of suitable documentation.

In the Guidelines for Libraries Serving Hospital Patients and the Elderly and Disabled in Long-Term Care Facilities, of 2000, the IFLA proposes the following objectives for libraries: To encourage the recognition that, consistent with the concept of whole patient care, libraries or library services should be a fundamental part of any short-or long-term care facility […and] to foster the well being and recovery of patients by: acquiring, organizing, maintaining, and/or providing library materials and services that can, according to each patient’s need, offer a means of diversion, therapy, culture and, where appropriate, education and training; as needed, providing information on health and wellness, and on specific illnesses, disorders, or other health-related problems including etiology, diagnosis, prognosis, and treatment.

The Public Library Manifesto of the IFLA/UNESCO, of 1994, states that: The services of the public library are provided on the basis of equality of access for all. [...] Specific services and materials must be provided for those users who cannot, for whatever reason, use the regular services and materials, for example linguistic minorities, people with disabilities or people in hospital or prison.

The added value of the Manifesto with regard to the standards mentioned above is the recognition of the mission of public libraries as actors in education: supporting both individual and self conducted education as well as formal education at all levels. In this context libraries become active collaborators of the health authorities in educating citizens on health subjects.

3.2.2 National legislation

The international standards form the basis for legislation on this subject. Most of the laws on patients' rights include the principles related to human dignity. For example, the Catalan and Spanish laws provide a detailed list of the fundamental standards on which they are based: the Universal Declaration of Human Rights, A Declaration on the Promotion of Patients’ Rights in Europe (World Health Organization Regional Office for Europe. WHO/EURO, 1994) and the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, 1997).

In order to better exercise their right to information on subjects related to health, citizens must be able to obtain a good health education. Only the legislation of the United Kingdom provides specific guidelines of action on this: 12.2: ... patients will get greater access to authoritative information about how they can care for themselves and their families under the aegis of NHS plus which will produce and kitemark books, leaflets and other written material.

3.3 The ethical framework

3.3.1 Codes of ethics of the medical profession

The basis of these codes is the Hippocratic Oath by which physicians are obliged to act always for the benefit of their patients. The right to information can be understood as a the updating of a partial aspect of this obligation. Citizens' interest in receiving information on their own conditions arose from the demands of groups of AIDS patients, and was later extended to all layers of society. The medical codes of ethics were the first to recognize that this demand for information is a right that can be exercised, and this recognition was later ratified by national parliaments. The codes of ethics were subsequently updated to make reference to the law. This code-law-code sequence is not found in librarians' codes of ethics, as will be seen below.

All the codes analyzed devote a whole section to the relationship between physicians and patients, including patients' right to information. As stated above, our interest focuses on the ownership and exercise of this right, and does not consider patients' right not to be informed, access to medical history, informed consent and advance directives. This distinction is not arbitrary because some codes consider these questions separately.

The right to information is dealt with in a similar way in all the codes. The Catalan case can serve as an example: Art. 22 Doctors are obliged to give patients as much information as possible on their state of health, the steps taken in the diagnosis, the complementary investigations and the treatments. The information must be given in an understandable way and exercising caution.

Below we present some significant aspects of some codes, such as the concept of the patient as a citizen, the reference to the legal order of each country, the description of how relations between physicians and patients must be conducted, information in the case of minors and dependent persons, and the defense of physicians as the only persons responsible for informing patients.

3.3.2 Codes of ethics of information professionals

Unlike the codes of ethics of physicians, which appear to obtain their authority and inspiration beyond the law, the codes of librarians are subordinated to the law. All, without exception, make implicit or explicit reference to the legal and regulatory framework as the supreme authority to which the professional activity should adapt, as is observed, for example, in The Librarian’s Code of Conduct: Fundamental Principles of the Italian Library Association (AIB): The librarian guarantees the user access to publicly available information and to documents without any restriction that is not explicitly and previously stated in laws or regulations.

The librarian's codes of ethics vary in content, but they all contain sections or articles devoted to services to users and access to information and/or documents. They do not deal with the offer of specific services aimed at satisfying the needs of specific groups, except in the Code of Ethics of the Official Catalan Association of Librarians and Documentalists (COBDC): Librarians and documentalists seek to promote the adoption of measures facilitating the use of library services by people with disabilities. However, they always mention the obligation to guarantee access to information to all citizens because it is a fundamental right.

The recognition of this fundamental right reflects the educational component inherent to the librarian's profession. On this, for example, the Code of Ethics of Swiss Librarians (BBS) states that the librarian seeks to make the users autonomous, and to this end forms collections that will allow ... [users] to understand the evolution of society, to exercise their democratic rights, to develop culturally and professionally, and to enjoy themselves.

The Code of Ethics of Librarians of the French Librarians' Association (ABF) states that librarians are charged by users to respond to their information needs: Librarians are charged by their public or private community to respond to its needs in terms of culture, information, education and leisure. To this end they form public collections and ensure their development and their use by citizens. Aware of their responsibility, librarians makes an unconditional commitment to fulfill this commission. This commitment guarantees the quality of the service offered, which is based on an ethical imperative (Hernández, 1998) rather than on the unilateral decision of librarians or the organization for which they work.

4 Conclusions

In this study we have attempted to present the the current situation on the recognition of patients' right to information in the legislation and in the codes of ethics of physicians and librarians in several Western European countries. We have tried to offer an overview that will allow each country and each group to reflect on how and to what extent patients can exercise this right, how all the stakeholders should intervene, and what information should be provided and in what context.

All the standards, laws and codes analysed deal with guaranteeing access to information. However, previous research shows that patients are not always aware of this right, doctors may be unreceptive to it and the resources for satisfying it are often not available. We therefore believe that it is necessary to generate a debate on the question with the participation of all the stakeholders (politicians, authorities, doctors, librarians and patients) in order to achieve the effective application of this right.


The authors express their thanks to Inés Montobbio (Biblioteca del Parlament de Catalunya), Sara Aguilera (Fundació Biblioteca Josep Laporte) and Dr. Anna Villarroya (Facultat de Biblioteconomia i Documentació. Universitat de Barcelona) for their support.


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Addendum 1

BelgiumLoi relative aux droits du patient (2002) [2002-08-22/45]<http://www.
Code de déontologie médicale (2006<http://www.
CataloniaLlei sobre els drets d’informació concernent la salut i l’autonomia del pacient, i la documentació clínica (2001) [DOGC n. 3353]<http://www.
Codi de deontologia (2005) Code of ethics of the Col·legi Oficial de Bibliotecaris-Documentalistes de Catalunya (2006)<http://www.
FranceLoi relative aux droits des malades et à la qualité du système de santé (2002) [JO nº 54]<http://www.
Code de déontologie médicale (1997 aprox.)<http://www.
Code de dóntologie du bibliothécaire (2003)<http://www.
Italy  Codice di deontologia medica (2006)<http://portale.
Codice deontologico del bibliotecario: principi fonamentali (1999)<http://www.
SpainLey básica reguladora de la autonomía del paciente y de derechos y obligaciones en materia de información y documentación clínica (2002) [BOE 15-11-2002]<http://www.
Código de ética y deontología médica (1999)<http://www.
Switzerland*  Le Code de déontologie de la FederationMedicorum Helveticorum (2007)<http://www.
Code de déontologie des bibliothécaires suisses (1998)<http://www.
United KingdomThe NHS Plan: A plan for investment. A plan for reform (2000) [Cm 4818-I]<http://www.
Code of Professional Practice for Library and Information Professionals (2008)<http://www.

* The political and administrative division of the Swiss Confederation permits each canton to approve laws according to its own needs (Vaud: Loi sur la santé publique, 1985; Valais: Loi sur la santé, 1996; Fribourg: Loi sur la santé,1999; Berna: Ordonnance sur les patients et les professionnels de la santé, 2002). The current inexistence of a common legislative framework in this area does not diminish the significance of the law on public health from the canton of Vaud (Loi sur la santé publique) that, as early as 1985, already considered the right to patient information (art. 21).

Table 1. The international standards, national laws and codes of conduct that were analyzed.

Addendum 2


Chapitre III
Droits du patient
Art. 7. § 1er. Le patient a droit, de la part du praticien professionnel, à toutes les informations qui le concernent et peuvent lui être nécessaires pour comprendre son état de santé et son évolution probable.
§ 2. La communication avec le patient se déroule dans une langue claire. Le patient peut demander que les informations soient confirmées par écrit..
§ 3. Les informations ne sot pas fournies au patient si celui-ci en formule expressément la demande à moins que la non-communication de ces informations ne cause manifestement un grave préjudice à la santé du patient ou de tiers…

Titre II Le médecin au service du patient (art. 27-33)
Art. 29 Le médecin doit s’efforcer d’éclairer son malade sur les raisons de toute mesure diagnostique ou thérapeutique proposée.
Art. 33 …le médecin tient compte de l’aptitude du patient à la recevoir et de l’étendue de l’information que celui-ci souhaite.


Capítol 2
El dret a la informació
Article 2
Formulació i abast del dret a la informació assistencial
1. En qualsevol intervenció assistencial, els pacients tenen dret a conèixer tota la informació obtinguda sobre la pròpia salut. Això no obstant, cal respectar la voluntat d’una persona de no ésser informada.
2. La informació ha de formar part de totes les actuacions assistencials, ha d’ésser verídica, i s’ha de donar de manera comprensible i adequada a les necessitats i els requeriments del pacient, per a ajudar-lo a prendre decisions d’una manera autònoma.
3. Correspon al metge responsable del pacient garantir el compliment del dret a la informació. També han d’assumir responsabilitat en el procés d’informació els professionals assistencials que l’atenen o li apliquen una tècnica o un procediment concrets.

III De la informació (art. 22-28)
Art. 22 El metge té el deure de donar al pacient la màxima informació possible … de manera entenedora i prudent …
Art. 25 El metge informarà les persones vinculades al pacient, quan aquest així ho autoritzi o quan el metge intueixi que no hi ha la possibilitat d’una comprensió lúcida per part del pacient.

Dels serveis als usuaris (art. 7-11)
Art. 7 Els serveis que presten els bibliotecaris-documentalistes han de ser de qualitat i dirigits a resoldre les necessitats informatives dels seus usuaris.


Chapitre II
Droits et responsabilités des usagers
Article 11
Le chapitre Ier du titre Ier du livre Ier de la première partie du code de la santé publique est ainsi rédigé :
Chapitre Ier
Information des usagers du système de santé
et expression de leur volonté

Art. L. 1111-2. - Toute personne a le droit d'être informée sur son état de santé. Cette information porte sur les différentes investigations, traitements ou actions de prévention qui sont proposés, leur utilité, leur urgence éventuelle, leurs conséquences, les risques fréquents ou graves normalement prévisibles qu'ils comportent ainsi que sur les autres solutions possibles et sur les conséquences prévisibles en cas de refus. Lorsque, postérieurement à l'exécution des investigations, traitements ou actions de prévention, des risques nouveaux sont identifiés, la personne concernée doit en être informée, sauf en cas d'impossibilité de la retrouver.
Cette information incombe à tout professionnel de santé dans le cadre de ses compétences et dans le respect des règles professionnelles qui lui sont applicables. Seules l'urgence ou l'impossibilité d'informer peuvent l'en dispenser.
Cette information est délivrée au cours d'un entretien individuel.
La volonté d'une personne d'être tenue dans l'ignorance d'un diagnostic ou d'un pronostic doit être respectée, sauf lorsque des tiers sont exposés à un risque de transmission.

Titre II
Devoirs envers les patients (art. 32-68)
Art. 34 Le médecin doit formuler ses prescriptions avec toute la clarté indispensable, veiller à leur compréhension par le patient et son entourage eet s’efforcer d’en obtenir la bonne execution.
Art. 35 Le médecin doit à la personne … une information loyale, claire et appropriée sur son état, les investigation et les soins qu’il lui propose … il tient compte de la personnalité du patient dans ses explications et veille à leur compréhension.
Art. 42 Un médecin appelé à donner des soins à un mineur ou à un majeur protégé doit s’efforcer de prévenir ses parents ou son représentant légal…

Le bibliothécaire est chargé par sa collectivité … de répondre aux besoins de la communauté en matière de culture, d’information, de formation et de loisirs.
1. L’usager
L’accès à l’information et à la lecture [est] un droit fondamental



Titolo III Rapporti con il cittadino (art. 20-57)
Art. 33 Informazione al cittadino
Il medico debe fornire al paziente la piú idonea informazione sulla diagnosi, sulla prognosi, sulle prospettive e le eventuali alternative diagnostico-terapeutiche … Il medico devrà communicare con il soggetto tenendo conto delle sue capacità di comprensione … Ogni ulteriore richesta di informazione da parte del paziente debe essere soddisfatta.
Art. 34 Informazione a terzi
L’informazione a terzi pressupone il consenso esplicitamente espresso dal paziente …

1. Doveri verso l’utente (art. 1.1-1.7)
Art. 1.1 Il bibliotecario garantisce all’utente l’accesso alle informazioni pubblicamente disponibili e ai documenti senza alcuna restrizione che non sia esplicitamente e preliminarmente definita attraverso leggi o regolamenti.


Capítulo II
El derecho de información sanitaria
Artículo 4. Derecho a la información asistencial.
1. Los pacientes tienen derecho a conocer, con motivo de cualquier actuación en el ámbito de su salud, toda la información disponible sobre la misma, salvando los supuestos exceptuados por la Ley. Además, toda persona tiene derecho a que se respete su voluntad de no ser informada. La información, que como regla general se proporcionará verbalmente dejando constancia en la historia clínica, comprende, como mínimo, la finalidad y la naturaleza de cada intervención, sus riesgos y sus consecuencias.
2. La información clínica forma parte de todas las actuaciones asistenciales, será verdadera, se comunicará al paciente de forma comprensible y adecuada a sus necesidades y le ayudará a tomar decisiones de acuerdo con su propia y libre voluntad.
3. El médico responsable del paciente le garantiza el cumplimiento de su derecho a la información. Los profesionales que le atiendan durante el proceso asistencial o le apliquen una técnica o un procedimiento concreto también serán responsables de informarle.

III Relaciones del médico con sus pacientes (art. 7-13)
Art. 10. Los pacientes tiene derecho a recibir información sobre su enfermedad y el médico debe esforzarse en dársela con delicadeza y de manera que pueda comprenderla. Respetará la decisión del paciente de no ser informado y comunicará entonces los extremos oportunos al familiar o allegado que haya designado para tal fin.




III Le médecin et le patient (art. 4-18)
Art. 10 Devoir d’information
Le médecin fourni au patient une information compréhensible sur les investigations diagnostiques et les mesures thérapeutiques envisagées, les résultats d’examens, le pronostic et les risques, ainsi que sur les autres possibilités de traitement. Il évalue soignosement la manière dont il ménera l’entretien avec le patient et les informations que celui-ci est en mesure de supporter.

Le/la bibliothécaire … travaille en liason avec des collègues et des institutions ou personnes susceptibles de compléter les prestations qu’il/elle fournit.

United Kingdom

10 Changes for patients

Information to empower patients
10.2 Patients will have far greater information about how they can look after their own health and about their local health services…
10.3 Patients will for the first time also have the option of having much greater information about the treatment that is being planned for them.
10.4 These innovation will give the patient a clear explanation of what is happening to them and why.

12 Cutting waiting for treatment

12.3 Starting in 2001, patients will get greater access to authoritative information about how they can care for themselves and their families under the aegis of NHSplus which will produce and kitemark books, leaflets and other written material.

Relationships with patients (art. 20-40)
Art. 20 Relationships based on openness, trust and good communication will enable you to work in partnership with your patients to address their individual needs.
Art. 23 You must take shure, wherever practical, that arrangements are made to meet patients’ language and communication needs.

Ethical principles for library and information professionals
Art. 1 . Concern for the public good in all professional matters, including respect for diversity within society, and the promoting of equal opportunities and human rights.

Code of Professional Practice for Library and Information Professionals
D     Responsibilities to Society
One of the distinguishing features of professions is that their knowledge and skills are at the service of society at large, and do not simply serve the interests of the immediate customer.

Table 2. Extracts from these documents referring to patients’ right to information.

Received: 03/06/2008. Accepted: 15/09/2008.