Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

BACKGROUND: The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. METHODS: This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. RESULTS: Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. CONCLUSIONS: Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy

Estudo de caso em dois países de língua oficial portuguesa, 2013

Saúde Global e Doenças TropicaisResumo Introdução As expectativas das entidades de apoio ao desenvolvimento quanto à demonstração de evidência relativa ao impacto dos seus programas de formação são cada vez maiores. Em 2013, a Fundação Calouste Gulbenkian solicitou a avaliação do Concurso para Estágios de Curta Duração em Portugal para Profissionais de Saúde dos PALOP e Timor Leste. Como resposta, foi implementado um projeto de investigação avaliativa, qualitativo e exploratório, que incluiu um estudo de caso. Objetivos O estudo de caso teve por objetivos conhecer o percurso dos estagiários desde a candidatura até ao regresso ao país de origem e conhecer o desempenho dos estagiários na instituição de origem após o estágio. Métodos A intervenção foi descrita por um modelo lógico que integra os pontos fortes do modelo de medição de programas de aprendizagem desenvolvido por Kirkpatrick e da análise de contribuição de Mayne. O estudo de caso incluiu sete estagiários agrupados em dois casos (estudo de caso múltiplo). Cada caso correspondeu a um dos Países Africanos de Língua Oficial Portuguesa. Os resultados foram obtidos por triangulação dos dados recolhidos através de análise documental e de entrevistas semiestruturadas efetuadas nas instituições de acolhimento e de origem. Resultados Foram evidenciadas a coerência na alocação, a reação positiva dos formandos, a perceção de ocorrência de aprendizagem e de mudanças de comportamento nos estagiários, e a ocorrência de transmissão das boas práticas aprendidas nos países de origem. Nas instituições de origem, foi evidenciada a perceção positiva quanto ao impacto da formação. Conclusões Os resultados obtidos indicam que a intervenção tem potencial para influenciar de forma positiva as instituições de origem dos estagiários, sendo recomendados estudos adicionais para estabelecer conclusões definitivas. Abstract Introduction The impact demonstration of the training programs financed by the development support institutions is felt as more and more needed. In 2013, the Fundação Calouste Gulbenkian requested the evaluation of the Contract for Short Term Courses for Health Professionals from Portuguese Speaking African Countries and East Timor, in Portugal. In response, we implemented a qualitative and exploratory evaluative research project, which included a case study. Objectives The case study objectives were to know the trainees route from the application to the return to their countries and meet the training assignment at the home institution after the stage. Methods The intervention was described by a logical model that integrates the strengths of the measurement model of learning programs developed by Kirkpatrick and of the Mayne contribution analysis. The case study included seven trainees grouped in two cases (multiple case study). Each case corresponded to one of theAfrican Portuguese Speaking Countries. The results were obtained by triangulation of data collected through document analysis and semi-structured interviews carried out in the home and host institutions. Results We highlighted consistency in allocation, the positive reaction of trainees, the perception of occurrence of learning and behavioral changes in trainees, and the occurrence of transfer of good practices learned in countries of origin. In the home institutions, it was evidenced the positive perception on the impact of training. Conclusions The results indicate that the intervention has the potential to positively influence the home institutions of the trainees, and recommend further studies to establish definitive conclusions.publishersversionpublishe

Inovação e utilidade: Avaliação Externa do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica

RESUMO O objetivo deste estudo foi avaliar a utilidade da Avaliação Externa do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica, considerado uma inovação. Trata-se de pesquisa avaliativa da Avaliação Externa do PMAQ-AB na percepção de sujeitos que vivenciaram a condução dessa avaliação por meio de estudo de caso qualitativo. Os dados foram coletados por meio de entrevista semiestruturada e de grupo focal on-line, e analisados por meio da análise de conteúdo de Bardin. Observou-se envolvimento dos interessados com pactuação em diferentes esferas da gestão nacional, envolvimento processual entre Departamento de Atenção Básica e Instituições de Ensino e Pesquisa, abrangência nacional facilitada com recurso de Tecnologia da Informação, negociação da logística in loco com gestores municipais. Verificou-se credibilidade científica dos avaliadores; a relação entre gestor nacional e instituições de pesquisa não se mostrou conflituosa; as instituições desvelaram conflitos entre gestores e Equipes de Atenção Básica sobre destinação dos recursos provenientes do PMAQ. Constatou-se grande escopo das informações sobre estrutura, processos e resultados; capilaridade e acesso aos resultados. Conclui-se que, na ótica dos participantes do estudo, a Avaliação Externa mostrou-se inovadora e útil à indução da melhoria da qualidade da Atenção Básica

Population-based clinical cancer registration in Germany

Cancer registration has a long tradition in Germany. In 2013, new legislation obliged all German states to implement additional clinical cancer registration, including standardised documentation of all therapies, recurrences and further follow-up. The overall aim was to use cancer registry data to measure and improve the quality of cancer care. Now, 10 years later, the status of the extended cancer registration will be presented. In 2019, more than 500,000 new cancer cases were reported to the federal cancer registries. Age-standardised incidence has decreased slightly over the last decade. The five-year relative survival rate for all cancers was 67% for women and 63% for men. Therapy data show that an evidence-based assessment of quality of cancer care, including provider-based benchmarking, is feasible. Feedback of such results directly to healthcare providers should further improve cancer care. In conclusion, the introduction of population-based clinical cancer registration in Germany can be considered a success.INTRODUCTION: In 2013, a new federal law obligated all German federal states to collect additional clinical data in population-based cancer registries as an active tool for monitoring and improving the quality of cancer care, increasing transparency and promoting health research. Now, 10 years later, the current status of the expanded cancer registration is presented, including current figures on cancer in Germany. METHODS: Reporting of cancer is mandatory for physicians, and about 5 to 10 reports from different healthcare providers are expected for each case. A uniform national dataset of about 130 items is used, and reports are usually sent electronically to the registry. We used the most recent data available from cancer registries up to the year of diagnosis in 2019. We calculated incidence rates and 5-year relative survival (5YRS) for common cancers. Data on clinical outcomes and benchmarking based on quality indicators (QIs) from guidelines were provided by the Cancer Registry Schleswig-Holstein (CR SH). RESULTS: All federal state cancer registries met most of the previously defined national eligibility criteria. Approximately 505,000 cancer cases were registered in 2019, with breast, prostate, colorectal and lung cancer being the most common cancers. The age-standardised cancer incidence has slightly decreased during the last decade. and spatial heterogeneity can be observed within Germany. 5YRS for all cancers was 67% and 63% for women and men, respectively. Therapy data for rectal cancer in 2019–2021 from the CR SH are shown as an example: 69% of the registered patients underwent surgery, mostly with curative intent (84%) and tumour-free resection (91%). Radiotherapy was given to 33% of the patients, and chemotherapy was given to 40%. Three selected QIs showed differences between involved healthcare providers. DISCUSSION: The implementation of population-based clinical cancer registration can be considered a success. Comprehensive recording of diagnosis, treatment and disease progression and the use of registry data for quality assurance, benchmarking and feedback have been implemented

Dos mundos bajo el mismo techo. Trabajo del hogar y no discriminación

Palabras como invisible, humillación, hostigamiento y abuso sexual acompañan la vida de estas mujeres, que han dejado atras la pobreza de sus pueblos y el calor de sus familias en aras de un futuro mejor, siempre mejor que casarse demasiado jóvenes, enfermarse y carecer de atención médica o padecer hambre en tiempos de sequía. ... Lo que en México es normal, en muchos países es ilegal. En Uruguay, Chile y España, los derechos laborales y la seguridad social son reconocidos para las trabajadoras del hogar y existen sanciones efectivas para su incumplimiento. En Nueva York existe la Ley de los Derechos de los Trabajadores Domésticos, que contempla salarios mínimos por hora y jornada, pago de tiempo extra, jornadas de ocho horas, vacaciones pagadas, días de descanso por enfermedad o razones personales, reconocimiento de días feriados, recursos por acoso sexual y estándares de protección en caso de discriminación racial. En Latinoamérica, hay legislaciones previas a la estadounidense aún más incluyentes, como las de Costa Rica y Colombia. Es decir, en México, todos los derechos mencionados están reconocidos para cualquier profesión u oficio... salvo para el trabajo doméstico. En esta ocasión, el Conapred tiene el agrado de presentar este volumen de la colección Matices, en el que personas provenientes de distintos ámbitos sociales se reúnen para reflexionar sobre las problemáticas de las trabajadoras del hogar, desde diversas perspectivas: incluye las voces de trabajadoras del hogar que nos comparten sus experiencias; los puntos de vista de personas que han podido palpar, en la convivencia cotidiana e íntima, los problemas de las mujeres que realizan esta actividad y, finalmente, el conocimiento de quienes han estudiado el tema y desean contribuir a su visibilización