Citizenship rights

Every person has the right to access health services equitably and to receive the corresponding benefits, whether individually or collectively.

Everyone is entitled to enjoy the rights and freedoms recognised in this Charter, which must be guaranteed without discrimination of any kind. In any case, the concrete attainment and exercise of the rights recognised in this Charter must be subject to the terms and conditions established in each of the legal provisions regulating these rights.

Everyone has the right to receive health care that is always adapted to their particular needs. In this sense, special care must be taken for all those groups that are more vulnerable, such as children, adolescents, people with mental illness, the elderly, people suffering from a disabling or chronic illness, people at risk of social exclusion (or in social exclusion) and people who belong to a specific group, recognised in health or social terms as a group at risk.

Everyone has the right, within the context of health care, to be treated with respect, in accordance with their age, beliefs, cultural identity and values. Treatment should be carried out with compassion, sensitivity and affection.

Everyone has the right to consume healthy food and to have easy and free access to drinking water, as well as to enjoy safe environments in terms of contamination. The Public Administration has the obligation to guarantee an environment totally free of health risks, enforcing and complying with the food and environmental regulations in force; at the same time, it must provide truthful information to the public on the presence of the regulated parameters and possible variations in them. Everyone has the right to know the food and environmental situation, and to make petitions and complaints when they believe they are subjected to exposures of any kind that could affect their health.

Everyone has the right to receive a minimum of health education, enabling them to obtain information and knowledge about all those factors that may influence individual and collective health, which will facilitate the adoption of measures to promote health and prevent disease. The information must be sufficient, truthful and comprehensible, and must be transmitted through all available channels, including those derived from information and communication technologies.

Everyone has the right to know the principles of essential nutrition, leaving aside deficiencies and excesses, which will ensure good health at all stages of life.

Everyone has the right to know the collective and individual benefits of adopting specific healthy lifestyle behaviours and the preventive measures that can be taken to avoid risky behaviour, both for their own health and for the health of others.

Everyone has the right to access the range of preventive activities proposed by the health system itself, which have been shown to be effective according to the available clinical evidence. The offer of these preventive measures must always respect the possible cultural diversity and identity of citizens.

Everyone has the right to have adequate knowledge of how to act in situations of risk that could endanger both individual and collective health. A risk situation is understood to be any phenomenon such as, for example, heat waves, atmospheric pollution peaks, epidemic outbreaks...

Everyone has the right of access to public health services and benefits, which are necessary to promote, preserve and restore their health, thus having access to an integrated range of services within the public health system. Likewise, everyone has the right to flexible working hours so that they can be attended to in a relevant manner by their primary care professionals.

Everyone has the right to know this Charter of Rights and Duties, as well as the right to access its contents through different media and communication channels, and to have them available in all the centres of the health system.

Every person has the right to have access to information on the services of the Public Health System, as well as all information related to the portfolio of services of each of the health centres where he/she can be attended. Every person has the right to know the health benefits covered by the insurer, whether private or public, the conditions under which they are provided and the limiting clauses.Tota persona té dret a conèixer les prestacions sanitàries que li cobreix l’asseguradora, ja sia privada o pública, les condicions en què aquestes són prestades i les clàusules limitadores.

Everyone has the right to choose their primary health care team (EAP) of reference, family doctor or nurse, and to have their preferences respected in relation to other health services or professionals.

Everyone has the right to be seen within a reasonable waiting time, always in accordance with clinical waiting criteria and with fairness in relation to their health situation.

Everyone has the right to obtain information on waiting times for health care, regardless of the level of care provided by the health centre where they are treated (diagnostic tests, emergency care, consultation care, surgery, etc.).

Every person has the right to have the scheduled times respected, always bearing in mind and understanding that these times may be altered from time to time for unforeseeable reasons due to the attendance of other users of the healthcare centre. At the same time, the person has the right to be notified -always as far in advance as possible- of any changes that may occur in any scheduled appointment and to be provided with a new one in a timely manner. In both situations, the person has the right to be informed of the situation or context that has caused the delay or change of the previously scheduled appointment.

Every person has the right to know the name, specific profession and professional category of the personnel carrying out the care/intervention and to be presented and identified in a clear, visible and relevant manner.

Every person has the right to access the opinion of a second health professional on a diagnosis and therapeutic recommendations, in cases that are particularly important for the person or for third parties, always in accordance with the provisions of the regulations in force.

Everyone has the right to be assured a space of privacy and intimacy in the healthcare facility where he or she is cared for. The entire care process - including diagnostic examinations, consultations, medical or surgical treatments, care, hygiene activities, examinations and other health actions - should always be carried out respecting the basic elements of acoustic and visual privacy, providing clothing and adequate space for changing, as well as limiting access by other people and professionals to those strictly necessary. Similarly, privacy should be preserved, to the maximum extent possible, during all types of transfers of users within the health centre or between different health care centres or to the person's home.

Every person has the right to have the information related to the data of health acts related to him/her kept in the strictest confidentiality, within the framework of professional secrecy and the right to privacy. This point is especially decisive in those types of data that are of a more sensitive and delicate nature: those related to one's own health, beliefs of all kinds, genetic inheritance, adoption, infectious diseases, social and family relationships, having suffered mistreatment of any kind... Access to users' data can only be granted to those health professionals directly linked to the person's care, and cannot be provided to other professionals, family members or related persons without the authorisation of the person concerned. The person also has the right to ensure that no one can access this information without his/her authorisation, always in accordance with the exceptions provided for in the regulations in force. At the same time, and in the event that someone accesses the data, the individual has the right to know who has accessed the data, the reason for this access and the use that has been made of it. However, it should be borne in mind that the right to confidentiality is not an absolute right and that various exceptions are envisaged and recognised, which always have to be objectified and quantified. These exceptions must be taken into account if confidentiality may cause harm to the person being treated or to third parties.L’accés a les dades dels usuaris/es només el poden tenir aquells/es professionals sanitaris/es directament vinculats/des amb l’atenció de la persona, i no es poden facilitar a altres professionals, familiars o persones vinculades sense l’autorització de la persona interessada. La persona també té dret que ningú pugui accedir a aquesta informació si no compta amb la seva pertinent autorització, sempre d’acord amb les excepcions que preveu la normativa vigent. Alhora, i en cas que algú accedeixi a les dades, la persona té dret de conèixer qui hi ha accedit, el motiu d’aquest accés i l’ús que se n’hagi fet. Tanmateix, cal tenir en compte que el dret a la confidencialitat no és un tot absolut i hi ha contemplades i reconegudes diverses excepcions, que sempre han de ser objectivades i quantificades. Aquestes excepcions s’han de tenir presents si la confidencialitat pot arribar a causar un perjudici per a la pròpia persona atesa o per a terceres persones.

Every person has the right to be adequately informed of the possible presence of professionals not directly related to the act of care he/she receives - who may be students, researchers or other professionals related to the world of healthcare, directly or indirectly - and may freely accept, or not, this presence. Every person has the right to decide and make explicit which relatives or persons related to him/her may be present during the act of care, except in all those cases in which such presence could be incompatible or inadvisable with the provision of care, treatment and attention. In this case, a justified and explicit justification is required. As for minors, from the age of 16, the same criteria will be applied as for adults, always accepting the presence of accompanying persons that the minor requests. When the minor is between 12 and 16 years of age, he/she may request privacy and confidentiality in the consultation or in the medical act, although it must be the professionals themselves who assess the context and the emotional and intellectual maturity of the minor, with the aim of requesting, if deemed necessary, the presence or absence of the parents, legal guardians or trusted third parties of the minor. Minors have the right to be accompanied at all times by relatives or companions during medical acts and the hospitalisation stage, with the main objective of reducing the possible sequelae that may arise from this action.

Everyone has the right to respect for their cultural and moral values, as well as their religious, ethical and spiritual convictions. At all times, and with special emphasis on the situation of admission to the health care facility, the person has the right to request or refuse both spiritual support and religious care according to his or her beliefs and has the right to be facilitated access to those who can provide this type of support. The practice deriving from this right should always be compatible with medical practice and respectful of the rules of the health care facility, as well as of other persons.

All persons have the right to give their informed consent to the acceptance of a health procedure, after having the appropriate information, and being able to compare this information with the professionals and having sufficient time in advance, in order to take joint responsibility for the decision, taking into account the risks, benefits, side effects of the procedure, alternative procedures, etc. Every person has the right to revoke his/her consent at any time if he/she considers it appropriate, without this fact implying prejudice or discrimination in the alternative treatment that he/she may need after declining the first one, and whose consent he/she had not revoked. However, the following situations should be considered as exceptions to the right to informed consent requirement: * When non-intervention with the subject would pose a risk to public health. * When the urgency with which treatment is needed does not allow for any kind of delay, because there is a danger of irreversible injury or because there is a danger of death; and the patient's wishes cannot be known. This exception is not in conflict with the obligation of the health professional to inform and build consensus as soon as it is possible to do so. In all those cases in which the person is not considered competent because of his/her mental or physical condition, it is up to the discretion of the doctor responsible for the healthcare - or of the team attending to the person -, in order for the information on the procedure to be understood and for the decision to be taken, to carry out the granting of consent by substitution with the representative person designated by the patient; or, failing this, with the relatives, representatives - if any - or persons related to the patient. Consent shall ordinarily be given verbally. It shall only be recorded in writing in all cases of surgical intervention, invasive diagnostic and therapeutic procedures and, in general, when a procedure is to be carried out that entails a notorious and foreseeable risk or inconvenience, likely to have repercussions in some way on the health of the person being treated or of the foetus, if this is the case of a woman who is pregnant. In all cases in which the person has given written informed consent, he/she shall have the right to receive a copy of the signed document.

Every person has the right to freely choose and refuse diagnostic tests, treatments, interventions, care, treatments or any other health action that may be proposed to him/her. In no case should this refusal lead to the abandonment of the patient, who should continue to receive all the necessary healthcare support, and in those cases where it is feasible, the patient should be offered alternative treatments, if they are feasible in the healthcare centre, or the necessary steps should be taken to find the most appropriate resource for the case.

Minors, from the age of 16 or legally emancipated, are considered to be of legal age to make their own decisions, and in this case parental consent is not required. In the case of serious risk, and in accordance with the criteria of the health staff, the legal guardians or parents must be properly informed and their opinion must always be taken into account for the type of intervention or decision to be taken in the area of the health of the person being treated. In cases of persons under 16 years of age who the health professional considers to have sufficient intellectual and emotional maturity for the type of intervention or decision to be taken, a shared decision must be promoted with their legal guardians, the support of people close to them and, in any case, the opinion of the minor must prevail. In the event that it is considered that the minor does not have sufficient intellectual and emotional maturity for the health intervention or decision to be taken in the field of health and health, the consent must be given by the minor's legal representative; having heard, in any case, his/her opinion, especially if he/she is over 12 years of age.

Everyone has the right to be cared for in a way that respects, safeguards and promotes the guarantee of one's dignity and personal autonomy. Whatever the health centre where the relevant health and social care is provided, the person has the right to continue to maintain his or her relational links, respecting as far as possible habits and lifestyles, provided that they are compatible with his or her care needs and with the rights of others. The person also has the right to freedom and confidentiality of correspondence and communications.

All persons and those accompanying them have the right to be asked for their consent prior to the recording and dissemination of images that have to do with their care process (photos, videos, audiovisual recordings, etc.) and to be told why they are being taken and the scope of their dissemination. In any case, the person being cared for has the right to the images being as non-explicit as possible, so that they can be identified.

Every person has the right to plan his or her health care decisions in advance. This planning allows a person of legal age, in full use of his or her faculties and with full competence, to express his or her preferences and values, as well as to specify the instructions regarding the clinical decisions to be made in the face of his or her disease process (and to modify them accordingly based on his or her evolution). Every person should be able to count on the support of social or health professionals of reference and trust throughout the entire process of planning for advance decisions. Every person has the right to always receive social and health care that incorporates various elements of care focused on the person, understanding advance decision planning as an essential element in the decision-making process, always shared between the user, the professionals and their affective and close environment. Every person has the right to be respected in advance planning decisions during their health or social care process, as long as they do not clearly contravene the good practice of health professionals or are contraindicated.

Every person has the right to draw up an advance directives document and to modify or revoke it at any time, either partially or in its entirety; and that this document be submitted to the Department of Health's advance directives register, and that it be included in their clinical records. Every person has the right to have everything that is explicitly stated in the advance directives document respected throughout the entire healthcare process. Even so, although the patient may openly express everything that fully coincides with his/her preferences and values, it must be taken into account that no actions may be carried out that contravene the good practice of health professionals or are contraindicated for the person.

Every person has the right to live the end-of-life process and according to his/her own conception of dignity. The patient has the right to refuse any treatment, even if it is life-sustaining and fully established, as long as it is a competent and well-informed decision. Within this context, the person has the right to receive quality care that allows and promotes the relief of suffering, whether physical, psychological, spiritual or social, and provided in the appropriate setting (in the health centre, at home...), always taking into account and attending to the person's preferences. In cases of unbearable suffering, while the person is in full possession of his or her faculties to decide, if he or she expresses a wish to die and requests help to do so, he or she has the right to be treated with respect, and to be given a response that is proportionate to the intensity of the suffering he or she is experiencing. In any case, the person has the right to be provided by health professionals with the necessary treatment and care to facilitate a dignified death without any suffering, always within the current legal framework. Whatever the context of the end of life, health personnel should facilitate as much as possible the accompaniment of family members, in an appropriate social context that allows for intimacy and accompaniment in the loss. Special care should be taken at the place where the death occurs, so that relatives and those close to the deceased receive appropriate treatment and guidance at this difficult time. The body of the deceased should always be treated with dignity, so that its integrity is preserved at all times, provided that the conditions of death and the subsequent treatment of the body of the deceased make this possible. In the event that relatives or persons request it, and it is feasible, access or visitation of the deceased should always be allowed.

Every person has the right to know the information obtained concerning his or her health in terms understandable to him or her, also given the personal circumstances concerning his or her health and the healthcare process, so that this fact can provide sufficient elements of judgement to make the necessary decisions regarding his or her health and the healthcare he or she receives. In the case of minors or incapacitated persons, they must also be appropriately informed in accordance with their understanding, without prejudice to having also informed those persons who represent them. Every person is entitled to information about their healthcare process and their state of health. Even so, the wish of a person being cared for not to be informed, if he/she so chooses, must be respected. It is always up to the health professional responsible for the care process of the person being cared for to ensure compliance with the right to information and to check that it has been satisfactorily understood. Every person also has the right to be respected in deciding which persons may receive information that refers to his/her state of health and healthcare process, whether he/she has explicitly or tacitly stated this.

Every person has the right to have a complete and integrated medical record, and for health institutions to provide the means to incorporate all the information on their state of health and the necessary health care actions of all the professionals involved, corresponding to the different episodes of care. All this information must be updated pertinently and truthfully, as well as including the identification data of the person and of the health care, the clinical-health care data and the social data, if they are to be used. The availability of integrated health care information prevents the person from undergoing repeated or unnecessary examinations and procedures, and also contributes to quality and safe care.

Every person has the right to know and have access to the information and data of a personal nature contained in registers and files, as well as to the documentation corresponding to their medical history. The right of this person to access the data obtained in health care may never be exercised to the detriment of the right of third parties to the confidentiality of their data, in the event that they are included, nor to the right of the professionals who have intervened in any way in their preparation; they may invoke the confidentiality of their subjective notes. Every person has the right to exercise the rights of access, rectification, cancellation and opposition regarding the data contained in their clinical history, within the terms established by the regulations in force. All healthcare centres must make available and make known in a relevant manner the procedure for guaranteeing the full exercise of these rights. The right of access to data may be exercised by means of representation, provided that this is duly accredited. In the case of minors, the following conditions must be met: * As regards access to data directly by the minor, the right is exercised from the age of 14, always in accordance with the provisions of the current legal framework on data protection. * Below the age of 14, access to data must be provided in accordance with the degree of emotional and intellectual maturity of the minor, an assessment to be made by the professional. In the case of deceased persons, access to their clinical history shall only be provided to the persons designated for this purpose by the deceased; if there are none, access shall be provided to the persons most closely linked, for family or de facto reasons. The only exception to this case is if the deceased person expressly prohibited, during his/her lifetime, access to this data.

Every person has the right to have healthcare centres keep all documentation on their clinical history under active protection and security measures and to conserve it, even if not necessarily in its original format, for the periods of time established in the regulations in force. This custody must allow for the collection, integration, retrieval and communication of the information at any time, always subject to the principle of confidentiality of the person's data. Furthermore, the person has the right to know the security measures and the persons, bodies or institutions that will be able to access this data and that will guarantee its confidentiality.

Everyone has the right to have his or her health data disclosed outside the health sector only in very specific cases: when a law so provides for reasons of general interest, or when the individual expressly consents to it. Every person has the right to anonymisation of his or her health data when these are used for public health, research or innovation, quality control, management or teaching purposes, apart from the possible exceptions provided for in the regulations in force. Access to these health data for the aforementioned purposes always requires the prior dissociation of the data identifying the person with respect to their health data, by means of totally secure procedures that guarantee that the anonymisation is carried out at source and does not allow the direct or indirect identification of the persons concerned. The use of anonymised health data for the purpose of public health, research, innovation and teaching should in any case be for the benefit of the community and should be carried out in accordance with the principles of proportionality and necessity.

Everyone has the right to use the electronic media available to them as a valid channel of communication and relationship with health professionals, as well as to access the health system through new technologies, through non-face-to-face care or telemedicine systems; always in relation to the level of implementation and development of these technologies. Nevertheless, the exercise of this right should be without prejudice to face-to-face care, whenever this is considered necessary. The effective use of information and communication technologies must be subject to the principles of security, accessibility, confidentiality, quality of care received and the ethical duties of professionals.

Everyone has the right to obtain reliable and truthful recommendations from health personnel related to health information available on the web (websites, applications, etc.).

Any person has the right to have the information written in understandable terms and words, whether it is a report on diagnostic tests carried out or a hospital, emergency or consultation discharge. This classification also includes medical certificates attesting to the state of health, in the cases established by a legal or regulatory provision.

Every person has the right to receive quality care in all its dimensions (effective, efficient, person-centred, accessible, equitable and safe), based on the scientific evidence available at the time and responsive to the person's uniqueness and values.

Everyone has the right to receive comprehensive health care, including promotion, prevention, diagnosis, treatment and personalised care. Furthermore, everyone has the right to access the mechanisms that guarantee integrated care between different levels of care, health centres, entities and professionals involved in this care. The user has the right to have access to professionals who ensure his or her longitudinal care, thus guaranteeing continuity, the quality of healthcare and his or her own safety within the framework of interdisciplinary care. Every person has the right to have the health professional team ensure that treatment and care are satisfactorily reviewed and matched between the different care settings present. In addition, the person has the right to receive the necessary emotional support and accompaniment from the professionals responsible for their care.

Everyone has the right to be cared for with the least possible risks, always within the framework of quality health care, which guarantees the clinical safety of the patient in order to reduce the probability and negative effects of adverse events of any nature that could occur during the provision of health care.

Everyone has the right to be guaranteed personal safety during the provision of health care.

Everyone has the right to receive treatment in a personalised manner, tailored to the patient's care needs, whenever possible, and in accordance with his/her biopsychosocial, spiritual and cultural needs. Health care must be considered as an act of care to be approached clinically as a whole, in an integrated manner, with the aim of guaranteeing the patient's safety, avoiding at all times interactions, adverse effects, contraindications and anything else that could negatively affect the health of the person. Every person has the right to have every action taken by health professionals accompanied by adequate review and conciliation, especially in the case of primary care, specific treatments and care that requires actions involving different levels of health care.

Every person has the right to know the medicines and products included in their medication and treatment plan, as well as the specific purpose for which they have been prescribed. This is information that must be accessible to the individual and provided by the means available to the health care and health management services, including all available technological means with the guarantees of confidentiality and security provided for in current legislation. At the same time, the person has the right to be informed by healthcare professionals about the correct use of the medicines prescribed, the expected effects, their possible adverse effects, the possible interactions between the medicines prescribed and other medicines or foods, the consequences that may arise from their prolonged use, and, if necessary, the existing alternatives to these medicines. All this, with the aim of promoting the rational use of medicines and complying with the treatment in the best possible way.

Every person has the right to have biological samples and tissue preparations from his/her healthcare process in order to request the opinion of a second professional, or the continuity of his/her healthcare in a different centre. Every person has the right to be guaranteed a system for the safekeeping of his/her biological samples in such a way that their accessibility is adequately regulated and sufficiently documented. At the same time, every person has the right that the facility where such samples have been obtained is responsible for transferring them, if necessary, to other health care facilities in a safe and secure manner and ensuring the preservation of the sample during such transfer. When biological samples or tissues from biopsy, donation or retrieval are stored, the individual always has the right to be informed in an appropriate manner and to authorise, or not, the use made of them.

Everyone has the right to know what quality assurance systems are in place in health services or facilities. Likewise, the individual has the right to know which institutions certify them. At the same time, they also have the right to know the results of the quality audits that are carried out in healthcare centres by accredited evaluation agencies.

Everyone has the right to the confidentiality of information about his or her genome, as well as the right not to have this information used for any kind of discrimination, whether individual or collective. Genomic data registers are obliged to have the necessary mechanisms in place to ensure that genomic information remains confidential. However, it is necessary to ensure that the registration of their genomic data is carried out in a comprehensive and coherent manner, avoiding piecemeal registration.

Everyone has the right to undergo genomic tests if they are especially indicated to identify carriers of genes responsible for a disease or to detect a natural predisposition to develop a disease. The above-mentioned tests may only be performed for medical or medical research purposes and always within the framework of appropriate genetic counselling, and never without the informed consent of the person concerned. At the same time, the only way in which there is a right to intervention on the human genome is when it has a preventive, therapeutic or diagnostic purpose, and only when its purpose is not the introduction of a modification in the genome of the offspring. The individual has the right to use assisted reproduction techniques to prevent certain hereditary diseases linked to sexual practices. All these rights do not cover interventions aimed at creating a human being genetically identical to another human being, whether living or dead. Genetically identical human beings are understood as those who share the same genetic nuclear load.

Every person has the right to be informed before being subjected to any genetic test, whether for health care or research purposes, which may involve unexpected findings with consequences for that person or for biological relatives. They should also be reminded that their rights to information and to exercise their right not to be informed will be respected. In the event that the person has exercised the right not to be informed by the health professionals of the results of a genetic analysis, only the information that is necessary for the monitoring of the treatment prescribed by the health personnel and accepted by the person being treated should be provided. In the event that this information that was not wanted to be received entails an important and immediate risk for biological relatives, the affected persons or their legally authorised representatives can be informed, even if the holder of the information did not want to know it. If the person being treated wants to know the information related to the genetic test to which he/she has been subjected but does not want to share it, efforts must be made to make him/her aware of the need to protect third parties potentially affected; ultimately, it is necessary to consult the Health Care Ethics Committee to assess the right of the relatives to have access to this information, limiting it exclusively to all necessary data and for health care or preventive purposes.

Every person who is participating in a research project has the right to protection of his or her life, health, integrity, dignity, privacy, confidentiality of personal information and self-determination. In all cases, the basic and universal rights of the individual and his or her personal decisions take precedence over the supposed benefits of science.

Everyone has the right not to be excluded from participation in research projects for any circumstances or reasons unrelated to the characteristics of the project itself, with the exception of the project's own criteria for exclusion. No physical, mental or social condition may deprive any person of the potential benefit of the research. In the case of minors, pregnant women or women of childbearing age, or elderly people, they have the same right as any other person to participate in research projects. Projects involving a member of any of these specific groups must be subject to the special conditions established by the current legal framework, and to the standards of good clinical practice on the part of the research.

Every person has the right to know whether the diagnostic, prognostic and therapeutic procedures being applied to him/her are likely to be used for an educational or research project. Any person who, in the context of health care, is proposed to participate in a research project has the right to receive accurate, truthful, exhaustive, comprehensible information adapted to his/her capacity of understanding, and provided sufficiently in advance to enable the individual to assess the advantages and disadvantages that this may entail for him/her. At the same time, the understanding of the information that the person receives must be guaranteed with the appropriate methodology. Any person who needs it may request second opinions from professionals not involved in the research project in which he/she is already participating or has been proposed to do so.

Every person has the right to freely sign the consent to participate in a programme, project and line of research after receiving all available information on the adequacy and appropriateness of the study, and the expected risk and benefit in each case. At the same time, the individual has the right to revoke his/her participation in the project at any time during the project. Every person must be assured that not wishing to participate in a research project will not lead to any loss in the quality of his/her health care. In the case of minors, consent must be obtained from parents or legal guardians. This consent must reflect the will of the minor, and in the case of minors aged 12 or over, they must also give their consent. With regard to population-based studies related to public health, in which the regulations do not explicitly require consent from the individuals, population-based data can be used following the criteria of anonymisation of the individuals, established by the regulations in force. In all those cases in which anonymisation is not possible, the express consent of those persons affected must be requested.

Any person who is incapable of giving consent may participate in programmes, projects and lines of research as long as a direct and real benefit to their health and well-being is expected, a written authorisation has been specifically given to the person legally representing this individual, and the latter does not express his/her refusal. At the same time, account must be taken of any advance directives that the person being cared for may have had prior to his or her incapacity. Apart from the information sheet addressed to the guardians, persons who have difficulties in understanding, reasoning and appreciation must have a summary information sheet, easy to understand, so that they can intervene as much as possible in the decision making process.

Every person has the right to know the destination of his or her biological samples, for which he or she has given informed consent, and the lines and programmes of research or projects that are to be used. In the event that a research programme or line of research is changed, the person should be informed and additional consent should be requested. The individual has the right to make a request for the destruction of biological samples that have been obtained for research projects. In the case of the death of the person involved in the research, and when there is a change in the line of research, advance directives, if any, should be taken into account. In all cases where no advance directives exist, the person's relatives should be consulted directly. In the event that consultation with the relatives of the deceased person is not feasible either, the Clinical Research Ethics Committee will decide on new authorisations in this specific case.

Everyone has the right to know the social return and the results of the research carried out in which they have participated, whether as a donor of biological samples and tissues or as an individual participant in the research. Likewise, citizens have the right to know the return of this research, within the framework of research transparency. The return on research is the information on the contribution to the results of the research project, to scientific and medical progress, as well as to the estimated social and economic impact and the contribution to the sustainability of health systems.

In all cases in which the diagnostic or therapeutic process is subject to initiatives for innovation or improvement of the process itself, the person being treated has the right to know the degree to which the new initiative differs from the standard, habitual practice commonly accepted by the medical community, the safety measures applied to reduce potential risks and the experience available. All these innovation initiatives have been evaluated by a commission with the guarantee of neutrality. In all exceptional cases in which medicines are prescribed in doses, indications or routes of administration not approved by the health regulatory agencies, the individual has the right to be properly informed of this use and to be informed of the reasons for it. The individual also has the right to an external assessment of the prescriber, which allows for the evaluation of the indication and the proposed regimen.

Everyone has the right, within the scope of health services, to be provided with the means to express their views and opinions on the health system itself, through all those instruments and procedures that are established. Everyone has the right to know and use these procedures to submit complaints, acknowledgements or suggestions, and to have them evaluated and responded to in a timely and appropriate manner.

Everyone has the right to participate in the healthcare system through institutions, social organisations and community representative bodies. The active participation of citizens, both individually and collectively, is an essential element in improving and optimising the effectiveness and quality of the current healthcare system. Everyone has the right to be able to participate in discussion and decision-making bodies through the structures provided by the health system itself.

Everyone, through institutions, social organisations and community representative bodies, has the right to participate in the strategic planning, prioritisation and proposal of the results of research projects.