Información de placebo en los ensayos clínicos y su influencia en la decisión de los participantes (Placebo information in clinical trials and its influence on participant decision)
To the team lead by Magí Farré Albaladejo and Astrid Hernández of the IMIM Foundation for the project: Placebo information in clinical trials and its influence on participant decision.
This project consists of two sub-projects. The first is based on a review of how the placebo is explained on the information and consent pages for clinical trials presented to the CEIC-Parc de Salut Mar (Clinical Investigation Ethics Committee). The second, in a simulated clinical trial, aims to discover whether the amount of information provided to patients on the placebo, in the information pages, influences their decision to take part or otherwise.
La percepció de confidencialitat en les persones grans de l'àmbit rural (Perception of confidentiality in elderly patients in rural communities).
Roser Marquet Palomer of the ICS EAP Canet de Mar (Canet de Mar Local Health Center) for the Project: Percepció de confidencialitat en les persones grans de l'àmbit rural (Perception of confidentiality in elderly patients in rural communities).
This project aims to discover the point of view of the elderly who live in rural areas: who they consider to be their necessary confidantes, what type of health information they allow these confidantes to be aware of, and under which circumstances. The aim is to incorporate the findings of this study when designing the procedures to be used in healthcare centers in rural areas.
| || || |
Guia orientativa per a guardadors de fet de persones amb malaltia d'Alzheimer als quals es proposa participar en projectes de recerca clínica (Orientation guide for de facto guardians of people with Alzheimer’s disease who decide to take part in clinical investigation projects).
To the team led by Joan Canimas of the Campus Arnau d'Escala Foundation for their: Guia orientativa per a guardadors de fet de persones amb malaltia d'Alzheimer als quals es proposa participar en projectes de recerca clínica (Orientation guide for de facto guardians of people with Alzheimer's disease who decide to take part in clinical investigation projects).
The main objective of the project is to confect an informative guide to help orientate de facto guardians or conservators concerning the process by which they decide whether or not the person they are taking care of should participate in a clinical trial.
L'experiència de ser cuidat en un hospital. Perspectiva des del client immigrat econòmic extracomunitario (The experience of being cared for in hospital from the perspective of the non EC economic immigrant)
This study arises in view of the interest and concern to explore, discover and understand, how immigrants being cared for in a hospital infirmary at any of the different Catalonian University Hospitals, feel about the experiences they go through. The study is centered on economic and / or political immigrants from outside the EC.
Protección de la confidencialidad en las historias clínicas informatizadas: los pacientes en la consulta de Salud Mental hospitalaria (Protecting confidentiality in digitalized clinical records: patients under mental health hospital consultation)
This project has the following objectives:
- To find out the opinions of mental-health-care professionals and the methods they use to ensure the confidentiality of patient information stored in digital files.
- To make proposals which can conciliate the common aspects of digitalized clinical records with the patient's right to confidentiality on certain specific details.
Ventilación mecánica, gastrostomía percutánea y toma de decisiones en pacientes con ELA: encuesta sobre la opinión de los pacientes, familiares y médicos (Mechanical ventilation, percutaneous gastrostomy and decision making in patients with ALS: an opinion survey among patients, their relatives and doctors)
05 January 2014
To the team led by José Luís Villanueva in a multi-center study carried out at five Madrid hospitals for their study: Ventilación mecánica, gastrostomía percutánea y toma de decisiones en pacientes con ELA: encuesta sobre la opinión de los pacientes, familiares y médicos (Mechanical ventilation, percutaneous gastrostomy and decision making in patients with ALS: an opinion survey among patients, their relatives and doctors).
The objective of this project is to evaluate the usefulness of planning treatment in advance when dealing with patients who have Amyotrophic Lateral Sclerosis. In particular, the aim is to evaluate the different perceptions held among the individuals involved in the healthcare process (doctors, main family caregivers and patients).
Listening to the voices of children. Ethical aspects of the process of informing hospitalized minors
The aim of this study is to explore the positive and negative aspects of informing a hospitalized minor, and to explore the child's perception of this process. The aims of the project are:
- to identify the factors which facilitate or obstruct the process of informing the child and his or her family in a health setting
- to understand the child's perception of the information supplied, from the perspective of health ethics.
Portal on advance directives across the world
05 January 2014
The purpose of this project is to create a global technological platform on advanced directives. The work will be developed using a web-based software application to incorporate contributions from a range of sources, and will use web 2.0 tools.
Positive eugenics and its impact on sporting practice
05 January 2014
Medicine has developed techniques which make it possible to submit embryos to preventive genetic testing to avoid the risk of transmitting hereditary diseases. However, this corrective intervention could give way to perfective intervention to improve memory, musculature and height, or to genetically select for sex. This forces us to consider whether genetic modifications in sportspeople to improve their physical abilities can be justified.
Social work with families: the responsibility of social workers in the self-determination of the most vulnerable groups
The aim of this project is to identify social work practice with families in vulnerable groups with regard to self-determination during illness. It also seeks to identify the role of the social worker in guaranteeing individual rights to information and decision-making.
Dementia and the principle of autonomy
05 January 2014
The team directed by Araceli Teixidó of the Hospital St. Jaume of Calella for the study: Anàlisi qualitativa del procés d'informació diagnòstica en pacients amb demència a la Corporació de Salut del Maresme i la Selva: s'ha d'incloure el malalt dement en el procés d'informació de la seva malaltia? (Dementia and the principle of autonomy. A qualitative analysis of the process of diagnostic information in patients with dementia with the Health Corporation of the Maresme and La Selva: Should patients with dementia be included in the information process regarding their illness?).
This study takes as its starting point the perception of medical staff regarding patients with dementia. After diagnosis, both the opinions held towards patients and the relationship with them usually changes. To identify whether this perception fits with the reality, the study seeks to identify whether or not doctors envisage a diagnostic information process with dementia patients, as is the case with other serious illnesses, or whether they exclusively address the patient's relatives. In addition, the research also considers the position of relatives and of some patients.
The final objective is to identify the level of autonomy granted to the patient during the process, and whether this is related to the patient's actual level of capacity or if this is assumed to be non-existent as a result of the diagnosis.
Donation of samples of tissue for research: perceptions and availability among oncology patients
To the researchers María Luisa Martínez, Margarita García and Valentín Navarro of the Catalan Oncology Institute, Hospital Duran i Reynals in Barcelona for the study: Donació de mostres de teixit per investigació: percepcions i disponibilitat entre malalts oncològics (Donation of samples of tissue for research: perceptions and availability among oncology patients).
Knowledge of cancer is growing exponentially due to knowledge of the human genome and the advantages which technological progress offers to science. This scientific development depends on the availability of human tumour samples and other tissue samples. Obtaining these has become a priority.
The study aims to explore the perception and availability of cancer patients with regard to the donation of samples for research and storage. As secondary goals, it also seeks to identify the perceptions of cancer patients regarding research with human samples, to identify factors associated with availability for donation, and to draw up and validate the questionnaire for evaluation of the study variables.
Legal problems of biobanks
05 January 2014
To Asaf Grauer Rodoy of the Department of Criminal Law at the Universidad de Valencia for the study Problemes jurídics dels biobancs (Legal problems of biobanks).
As a result of the recent introduction of Act 14/2007, the Spanish legal system has recognised the bio-bank phenomenon for the first time. However, the existing legislation is a long way from resolving all the doubts which have arisen in practice.
The project aims to conduct a thorough study which provides a satisfactory explanation of the legal reality and of the uses of bio-banks in modern society. To achieve this, it will analyse a range of issues which the legislation has avoided but which are essential for the legal regulation of biobanks.
Validation of the MacCAT-T scale: a tool for assessing competence to take health decisions
The team directed by Pablo Hernando of the Parc Taulí Health Corporation of Sabadell for the study Validación de la escala MacCAT-T: herramienta para evaluar la capacidad en la toma de decisiones sanitarias (Validation of the MacCAT-T scale: a tool for assessing competence to take health decisions).
The main objective of this project is to validate, adapt and translate the MacCAT-T into Spanish. The MacCAT-T is a tool which examines the ability of individuals to understand, reason, appreciate and express a choice in order to consent to medical treatment. In the United States, this tool is used as a reference in legal contexts, but in Spain we still lack capacity assessment protocols, of which a tool like the MacCAT is an essential part.
In addition to adapting the MacCAT-T, the study will observe its correlation with the CME (Cognitive Mini-Exam), analyse the results of the MacCAT in four patient groups, and assess how easy it is to use.
Convergence of human improvement technologies: ethical and social aspects
To Miguel Moreno Muñoz of the Department of Philosophy at the Universidad de Granada for the project Convergencia de tecnologías con fines de mejora humana: aspectos éticos y sociales (Convergence of human improvement technologies: ethical and social aspects).
Descripción de las características de los pacientes ingresados en una unidad de curas paliativas que verbalizan deseos de muerte o demanda de eutanasia (Description of the characteristics of patients admitted to the palliative care unit who express the desire to die or request euthanasia)
05 January 2014
To Ernest Güell Pérez and Antonio Pasqual López of the Research Institute of the Hospital de la Santa Creu i de Sant Pau of Barcelona for the work: Descripció de les característiques dels pacients ingressats a una unitat de cures pal·liatives que verbalitzen desitjos de mort o demanda d'eutanàsia (Description of the characteristics of patients admitted to the palliative care unit who express the desire to die or request euthanasia).
Patentes sobre los resultados de la investigación con células madre (Patents based on the results of stem cell research)
To Asunción Esteve of the Centre for Innovation Law & Policy at the University of Toronto for the study Patentes sobre los resultados de la investigación con células madre. (Patents based on the results of stem cell research).
Problemas éticos en la comunicación con los pacientes inmigrantes infecciosos de larga duración y con tratamientos paliativos (Ethical problems in communicating with immigrant patients with long-term infectious diseases and palliative care)
To the research team headed by Juan Carlos Siurana of the Department of Legal Philosophy at the University of Valencia for the project: Problemas éticos en la comunicación con los pacientes inmigrantes infecciosos de larga duración y con tratamientos paliativos en el Hospital Doctor Moliner de Portacoeli, Valencia (Ethical problems in communicating with immigrant patients with long-term infectious diseases and palliative care at the Doctor Moliner Hospital of Porta Coeli, Valencia).
Factors associated with awareness of and drawing up living will documents in patients with neurodegenerative pathology
To Glòria Miró Andreu, of the Mataró Hospital of the Maresme Health Consortium for the study: Factores asociados al conocimiento y realización de documentos de voluntades anticipadas en enfermos con patología neurodegenerativa (Factors associated with awareness of and drawing up living will documents in patients with neurodegenerative pathology).
Lleida minor's competency scale
05 January 2014
To the research team headed by Montse Esquerda i Aresté of the Universitat de Lleida for the project: Escala de competència del menor de Lleida (Lleida minor's competency scale).