Assuntos
Atenção à Saúde , Custos de Cuidados de Saúde , Instalações de Saúde , Propriedade , Setor Privado , Qualidade da Assistência à Saúde , Atenção à Saúde/economia , Atenção à Saúde/organização & administração , Atenção à Saúde/normas , Instalações de Saúde/economia , Instalações de Saúde/normas , Propriedade/economia , Propriedade/organização & administração , Propriedade/normas , Setor Privado/economia , Setor Privado/organização & administração , Setor Privado/normas , Qualidade da Assistência à Saúde/economia , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/normasRESUMO
Margaret McGregor and colleagues consider Bradford Hill's framework for examining causation in observational research for the association between nursing home care quality and for-profit ownership.
Assuntos
Comércio/legislação & jurisprudência , Serviços Contratados/legislação & jurisprudência , Atenção à Saúde/legislação & jurisprudência , Política de Saúde/legislação & jurisprudência , Instituição de Longa Permanência para Idosos/legislação & jurisprudência , Casas de Saúde/legislação & jurisprudência , Propriedade/legislação & jurisprudência , Formulação de Políticas , Indicadores de Qualidade em Assistência à Saúde/legislação & jurisprudência , Idoso , Comércio/economia , Comércio/normas , Comércio/tendências , Serviços Contratados/economia , Serviços Contratados/normas , Serviços Contratados/tendências , Redução de Custos , Análise Custo-Benefício , Atenção à Saúde/economia , Atenção à Saúde/normas , Atenção à Saúde/tendências , Medicina Baseada em Evidências/legislação & jurisprudência , Idoso Fragilizado , Custos de Cuidados de Saúde , Gastos em Saúde , Política de Saúde/economia , Política de Saúde/tendências , Pesquisa sobre Serviços de Saúde , Instituição de Longa Permanência para Idosos/economia , Instituição de Longa Permanência para Idosos/normas , Instituição de Longa Permanência para Idosos/tendências , Humanos , Casas de Saúde/economia , Casas de Saúde/normas , Casas de Saúde/tendências , Estudos Observacionais como Assunto , Propriedade/economia , Propriedade/normas , Propriedade/tendências , Melhoria de Qualidade/legislação & jurisprudência , Indicadores de Qualidade em Assistência à Saúde/economia , Indicadores de Qualidade em Assistência à Saúde/normas , Indicadores de Qualidade em Assistência à Saúde/tendências , Fatores de Tempo , Populações Vulneráveis/legislação & jurisprudênciaRESUMO
People sometimes feel as if they own items that do not actually belong to them. These feelings of ownership affect people in diverse contexts and provide a striking example of how feelings can conflict with reality. Across 6 experiments, we investigated young children's (N = 614) and adults' (N = 243) understanding of these feelings. In Experiment 1, children aged 4 to 7 inferred that an agent who habitually used a publicly owned item would have feelings of ownership for it, and children distinguished these feelings from actual ownership. Experiments 2 and 3 replicated these findings and also found that children were less likely to attribute feelings of ownership when the agent used the item nonhabitually. Experiments 4 and 5 further found that children and adults also distinguish feelings of ownership from false beliefs of ownership. Finally, in Experiment 6, even younger children showed signs of understanding feelings of ownership. Children aged 3 and 4 predicted that an agent who habitually used an item would be upset to discover someone else using it. Together, these findings suggest that young children are aware of the psychological component of ownership. The findings are also informative about their understanding of habits and repeated actions and the potential for feelings to conflict with beliefs, knowledge, and reality. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
Assuntos
Emoções/fisiologia , Habituação Psicofisiológica/fisiologia , Propriedade/normas , Criança , Pré-Escolar , Feminino , Humanos , MasculinoRESUMO
The neural representation of a 'biological self' is linked theoretically to the control of bodily physiology. In an influential model, selfhood relates to internal agency and higher-order interoceptive representation, inferred from the predicted impact of efferent autonomic nervous activity on afferent viscerosensory feedback. Here we tested if an altered representation of physical self (illusory embodiment of an artificial hand) is accompanied by sustained shifts in autonomic activity. Participants (N = 37) underwent procedures for induction of the rubber hand illusion (synchronous stroking of own unseen hand and observed stroking of artificial hand) and a control condition (asychronous stroking). We recorded electrocardiography, electrodermal activity, and a non-invasive measure of multiunit skin sympathetic nerve activity (SKNA) from the chest. We compared these autonomic indices between task conditions, and between individuals who did and did not experience the illusion. Bayes factors quantified the strength of evidence for and against null hypotheses. Observed proprioceptive drift and subjective reports confirmed the efficacy of the synchronous (vs asynchronous) condition in inducing illusory hand ownership. Stringent discriminant analysis classified 24/37 individuals as experiencing the rubber hand illusion. Surprisingly, heart rate, heart rate variability, electrodermal activity, and SKNA measures revealed no autonomic differences between synchronous vs asynchronous conditions, nor between individuals who did or did not experience the rubber hand illusion. Bayes factors indicated substantial evidence for no physiological differences. In contrast to earlier reports, our autonomic data show the absence of a reliable change in physiological state during the rubber hand illusion. More encompassing perturbations of self-experience, for example in full body illusions, may nevertheless be coupled to, or facilitated by, changes in efferent autonomic activity and afferent viscerosensory feedback. Our findings suggest that such changes in bodily physiology are not sustained as an obligatory component of the rubber hand illusion.
Assuntos
Membros Artificiais/psicologia , Mãos/fisiologia , Ilusões/fisiologia , Propriedade/normas , Percepção do Tato/fisiologia , Percepção Visual/fisiologia , Adulto , Teorema de Bayes , Feminino , Humanos , Masculino , Propriocepção/fisiologia , Análise e Desempenho de Tarefas , Adulto JovemRESUMO
Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing.
Assuntos
Registros Eletrônicos de Saúde/normas , Disseminação de Informação , Centros Médicos Acadêmicos/normas , Pesquisa Biomédica/ética , Pesquisa Biomédica/normas , Instalações de Saúde/normas , Disseminação de Informação/ética , Propriedade/normas , Escolas para Profissionais de Saúde/normasRESUMO
The search for valuable new products from among the world's stock of natural biological resources is mostly carried out by people from wealthy countries, and mostly takes place in developing countries that lack the research capacity to profit from it. Surely, the indigenous people should receive some compensation from it. But we must build a robust defense for this intuition, rooted in the Western moral traditions that are widely accepted in wealthy countries, if we are to put it into practice and enforce it.
Assuntos
Países Desenvolvidos , Países em Desenvolvimento , Pesquisa em Genética/ética , Setor de Assistência à Saúde , Cooperação Internacional , Propriedade , Justiça Social , Responsabilidade Social , Biodiversidade , Conservação dos Recursos Naturais/economia , Conservação dos Recursos Naturais/legislação & jurisprudência , Indústria Farmacêutica , Pesquisa em Genética/economia , Pesquisa em Genética/legislação & jurisprudência , Genética Populacional , Saúde Global , Setor de Assistência à Saúde/ética , Setor de Assistência à Saúde/tendências , Humanos , Propriedade Intelectual , Obrigações Morais , Propriedade/ética , Propriedade/normas , Patentes como Assunto , Sujeitos da PesquisaRESUMO
CONTEXT: Ownership is an important construct of sustainability for community-based health programming, though it is often not clearly defined or measured. We implemented and evaluated a community-driven maternity waiting home (MWH) model in rural Zambia. We engaged stakeholders at all levels and provided intensive mentorship to an MWH governance committee comprised of community-selected members. We then examined how different stakeholders perceive community ownership of the MWH. METHODS: We conducted 42 focus group discussions with community stakeholders (pregnant women, fathers, elders, and community health volunteers) and 161 in-depth interviews with MWH stakeholders (health facility staff, district health officials, and MWH governance committee and management unit members) at multiple time-points over 24 months. We conducted a content analysis and triangulated findings to understand community ownership of the MWH and observe changes in perceptions of ownership over time. RESULTS: Community members' perceptions of ownership were related to their ability to use the MWH and a responsibility toward its success. Community and MWH stakeholders described increasingly more specific responsibilities over time. Governance committee and management unit members perceived their ability to represent the community as a crucial component of their role. Multiple respondent types saw collaboration between the governance committee and the health facility staff as key to allowing the MWH to meet its goal of serving the community. CONCLUSION: The perceptions of community ownership evolved as the intervention became more established. Use of the MWH, and clear understanding of roles and responsibilities in management of the MWH, seemed to foster feelings of community ownership. To improve the sustainability of community-based maternal and child health programs, interventions should be accessible to target communities and clear roles should be established among stakeholders.
Assuntos
Serviços de Saúde Comunitária/organização & administração , Serviços de Saúde Materna/organização & administração , Propriedade/normas , Serviços de Saúde Rural/organização & administração , Serviços de Saúde Comunitária/normas , Parto Obstétrico , Feminino , Humanos , Entrevistas como Assunto , Masculino , Serviços de Saúde Materna/normas , Tutoria , Serviços de Saúde Rural/normas , Participação dos Interessados , ZâmbiaRESUMO
OBJECTIVE: Brain-computer interface (BCI) research and commercially available neural devices generate large amounts of neural data. These data have significant potential value to researchers and industry. Individuals from whose brains neural data derive may want to exert control over what happens to their neural data at study conclusion or as a result of using a consumer device. It is unclear how BCI researchers understand the relationship between neural data and BCI users and what control individuals should have over their neural data. APPROACH: An online survey of BCI researchers (n = 122) gathered perspectives on control of neural data generated in research and non-research contexts. The survey outcomes are discussed and other relevant concerns are highlighted. MAIN RESULTS: The study found that 58% of BCI researchers endorsed giving research participants access to their raw neural data at the conclusion of a study. However, researchers felt that individuals should be limited in their freedom to either donate or sell these data. A majority of researchers viewed raw neural data as a kind of medical data. Survey respondents felt that current laws and regulations were inadequate to protect consumer neural data privacy, though many respondents were also unfamiliar with the details of existing guidelines. SIGNIFICANCE: The majority of BCI researchers believe that individuals should have some but not unlimited control over neural data produced in research and non-research contexts.
Assuntos
Interfaces Cérebro-Computador/normas , Disseminação de Informação , Propriedade/normas , Privacidade , Pesquisadores/normas , Inquéritos e Questionários , Adulto , Interfaces Cérebro-Computador/psicologia , Feminino , Humanos , Disseminação de Informação/métodos , Masculino , Pessoa de Meia-Idade , Privacidade/psicologia , Pesquisadores/psicologiaRESUMO
Firearms account for the majority of suicide deaths in the United States military and access to firearms is a risk factor for suicide. Prior research has shown service members tend to store firearms unsafely, with some research indicating this is particularly true among those with elevated suicide risk. Existing research has focused on individuals at known risk for suicide; however, those who die by suicide using a firearm are prone to avoiding mental healthcare and underreporting suicidal ideation, thereby necessitating an understanding of this phenomenon among firearm owners outside of the mental healthcare system. The present study examined firearm storage and suicide risk in a large nonclinical sample of service members (total sample n = 953; firearm owning sample = 473). Lifetime suicidal ideation, current depressive symptoms, and perceived likelihood of making a future suicide attempt were associated with unsafe firearm storage. In contrast, lifetime suicidal ideation was not associated with a greater likelihood to own firearms. These findings suggest those at risk of suicide are more likely to store firearms unsafely, which increases ease of access to firearms. These findings reiterate the importance of means safety as a suicide prevention strategy.
Assuntos
Armas de Fogo/normas , Militares/psicologia , Propriedade/normas , Assunção de Riscos , Ideação Suicida , Tentativa de Suicídio/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Fatores de Risco , Autorrelato , Tentativa de Suicídio/prevenção & controle , Estados Unidos/epidemiologia , Violência/prevenção & controle , Violência/psicologiaRESUMO
BACKGROUND/OBJECTIVES: Improving quality performance in home health is an increasingly high priority. The objective of this study was to examine trends in industry performance over time using three quality measures: a composite quality metric (Q index), an infection prevention measure (vaccination verification), and an outcome measure (hospital avoidance). DESIGN/SETTING/PARTICIPANTS/MEASURES: We linked Home Health Compare and Provider of Services data from 2012 to 2016, which included 39 211 observations during the 5-year study period and 7670 agencies in 2016. The Q index was developed to allow comparability over time, equally weighting the contributions of each element. After examining summary statistics, we developed three regression models stratified by ownership (for-profit/nonprofit agency) and included two constructs of nurse staffing, in addition to controlling for known confounders. RESULTS: Most agencies (80.4%) were for-profit agencies. The Q index and vaccination verification improved substantially over time, but there was no change in hospital avoidance. Ownership status was associated with all three measures (P < .001). Registered nurse staffing (relative to licensed practical nurses and home health aides) was associated with higher Q index and vaccination verification (P < .001). CONCLUSION: The Q index allows for assessment of trends over time in home healthcare. Ownership and nurse staffing are important factors in the quality of care. The overall home care market is driven by for-profit agencies, but their characteristics and outcomes differ from nonprofit agencies. J Am Geriatr Soc 67:1859-1865, 2019.
Assuntos
Serviços de Assistência Domiciliar/normas , Propriedade/normas , Admissão e Escalonamento de Pessoal/normas , Indicadores de Qualidade em Assistência à Saúde , Humanos , Padrões de Referência , Análise de Regressão , Estados UnidosRESUMO
PURPOSE: The scope of physicians' responsibility toward patients is becoming increasingly complicated to delimit as interdisciplinary care delivery and degrees of subspecialization increase. Patients can easily be lost across multiple transitions involved in care. Preparing learners to engage in safe and responsible patient care requires that we be clear about parameters of patient ownership. This scoping review (1) explores and synthesizes definitions of patient ownership and (2) describes the factors that influence patient ownership. METHOD: Searching PubMed, Embase, and PsycINFO, the authors sought out publications of any format (i.e., original research papers, review articles, commentaries, editorials, and author discussions) that (1) addressed patient ownership directly or a closely related concept that explicitly affected patient ownership, (2) included medical care providers (attending/faculty physicians, medical residents, and/or medical students), and (3) were published in English. The authors analyzed findings to construct common themes and categorize findings. RESULTS: Of 411 papers screened, 82 met our inclusion criteria. Twenty-three papers defined patient ownership in highly variable ways. Common themes across definitions included responsibility for patient care, personally carrying out patient care tasks, knowledge of patients' medical information, independent decision making, and putting patients' needs above one's own. Factors influencing patient ownership were (1) logistical concerns, (2) personal attributes, and (3) socially or organizationally constructed expectations. CONCLUSIONS: A new definition of patient ownership is proposed encompassing findings from the review, while also respecting the shift from individual to a team-based patient care, and without removing the centrality of an individual provider's commitment to patients.
Assuntos
Tomada de Decisões , Atenção à Saúde/normas , Guias como Assunto , Propriedade/normas , Equipe de Assistência ao Paciente/normas , Assistência ao Paciente/normas , Médicos/normas , HumanosRESUMO
: media-1vid110.1542/5972298231001PEDS-VA_2018-1171Video Abstract BACKGROUND: Firearm-related fatalities are a top 3 cause of death among children in the United States. Despite historical declines in firearm ownership, the firearm-related mortality rate among young children has risen over the past decade. In this study, we examined changes in firearm ownership among families with young children from 1976 to 2016, exploring how such changes relate to recent increases in firearm-related mortality among 1- to 5-year-olds. METHODS: Individual-level data from the National Vital Statistics System were merged with household-level data from the General Social Survey to create national-level estimates of firearm-related child mortality and family firearm ownership from 1976 to 2016 (n = 41 years). Vector autoregression models were used to examine the association between firearm ownership and child mortality. RESULTS: The proportion of non-Hispanic white families with young children who owned firearms declined from 50% in 1976 to 45% in 2016 and from 38% to 6% among non-Hispanic African American families. The proportion of white families with young children who owned handguns, however, increased from 25% to 32%; 72% of firearm-owning families with young children now own a handgun. Increases in handgun ownership partially explained the recent rise in firearm-related white child mortality (B = 0.426), net of economic conditions, and sociodemographic characteristics of firearm-owning families. CONCLUSIONS: Changes in the types of firearms in the homes of US families may partially explain recently rising firearm-related mortality among young white children. These findings hold relevance for pediatricians and policy makers aiming to reduce firearm-related mortality and promote firearm safety in children's homes.
Assuntos
Armas de Fogo , Propriedade/normas , Propriedade/tendências , Segurança/normas , Ferimentos por Arma de Fogo/mortalidade , Criança , Pré-Escolar , Armas de Fogo/legislação & jurisprudência , Humanos , Lactente , Mortalidade/tendências , Propriedade/legislação & jurisprudência , Segurança/legislação & jurisprudência , Ferimentos por Arma de Fogo/diagnósticoAssuntos
Relações Hospital-Médico , Determinação do Valor Econômico de Organizações de Saúde/economia , Prática Privada/economia , Serviços Contratados/economia , Serviços Contratados/normas , Tomada de Decisões , Humanos , Propriedade/economia , Propriedade/normas , Determinação do Valor Econômico de Organizações de Saúde/normas , Prática Privada/normas , Estados UnidosRESUMO
Purpose of the Study: Ownership of nursing homes (NHs) has primarily focused broadly on differences between for-profit (FP), nonprofit (NFP), and government-operated facilities. Yet, among FPs, the understanding of detailed ownership structures at individual NHs is rather limited. Particularly, NH administrators may hold significant equity interests in their facilities, leading to heterogeneous financial incentives and NH outcomes. Through the principal-agent theory, this article studies how managerial ownership of individual facilities affects NH outcomes. Design and Methods: We use a unique panel dataset of Ohio NHs (2005-2010) to empirically examine the relationship between managerial equity ownership and NH staffing, quality, and financial performance. We identify facility administrators as owner-managers if they have more than 5% of the equity stakes or are relatives of the owners. The statistical analysis is based on the pooled ordinary least squares and NH-fixed effect models. Results: We find that owner-managed NHs are associated with higher nursing staff levels compared to other FP NHs. Surprisingly, despite higher staffing levels, owner-managed NHs are not associated with better quality and we find no statistically significant difference in financial performance between owner-managed and nonowner-managed FP NHs. Our results do not support the principal-agent model and we offer alternative explanations for future research. Implications: Our findings provide empirical evidence that NH ownership structures are more nuanced than simply broadly categorizing facilities as FP or NFP, and our results do not fully align with the standard principal-agent model. The role of managerial ownership should be considered in future NH research and policy discussions.
Assuntos
Instituições Privadas de Saúde/economia , Assistência de Longa Duração , Casas de Saúde/economia , Organizações sem Fins Lucrativos/economia , Propriedade/economia , Qualidade da Assistência à Saúde/economia , Instituições Privadas de Saúde/normas , Humanos , Casas de Saúde/classificação , Casas de Saúde/normas , Recursos Humanos de Enfermagem , Ohio , Organizações sem Fins Lucrativos/normas , Propriedade/normas , Admissão e Escalonamento de Pessoal/economia , Qualidade da Assistência à Saúde/normas , Recursos HumanosRESUMO
Although biobanks are vital for modern medical research, serious concerns have been raised about the legal basis and framework of such endeavours. This led the German 'Telematics Platform for Medical Research Networks' ('Telematikplattform für Medizinische Forschungsnetze', TMF) to initiate a project in 2004 that was designed to place German biobanks on a sound legal footing. This project involved the planning, writing and evaluation of an expert report that addresses in great detail the legal issues concerning property rights, medical professional regulations, general liability insurance, resource continuity and research secrecy. Here, we provide a brief summary of the major results of this project.
Assuntos
Bancos de Espécimes Biológicos/ética , Bancos de Espécimes Biológicos/legislação & jurisprudência , Bancos de Espécimes Biológicos/normas , Alemanha , Guias como Assunto , Humanos , Propriedade/ética , Propriedade/legislação & jurisprudência , Propriedade/normasRESUMO
The purpose of this case-control study is to compare the treatment algorithm and complication rate for patients who undergo an anterior cervical discectomy and fusion at a physician-owned specialty hospital to those who undergo surgery at a university-owned tertiary care hospital. Two controls were identified for 77 patients, and no differences in demographic data were identified. The median time between the onset of symptoms and surgery was shorter for patients who had surgery at the tertiary care center than for patients who had surgery at the specialty hospital (26.7 weeks vs 32.7 weeks, P = .0004). Furthermore, a higher percentage of patients who had surgery at the specialty hospital attempted nonoperative treatments than patients who underwent surgery at the tertiary care hospital.
Assuntos
Vértebras Cervicais/cirurgia , Discotomia , Hospitais Especializados , Propriedade , Fusão Vertebral , Centros de Atenção Terciária , Algoritmos , Estudos de Casos e Controles , Discotomia/efeitos adversos , Discotomia/métodos , Discotomia/estatística & dados numéricos , Feminino , Hospitais Especializados/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Propriedade/normas , Propriedade/estatística & dados numéricos , Complicações Pós-Operatórias/epidemiologia , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/estatística & dados numéricos , Fusão Vertebral/efeitos adversos , Fusão Vertebral/métodos , Fusão Vertebral/estatística & dados numéricos , Centros de Atenção Terciária/estatística & dados numéricos , Fatores de TempoRESUMO
There has been a radical transformation in the provision of adult residential and nursing home care in England over the past four decades. Up to the 1980s, over 80% of adult residential care was provided by the public sector, but today public sector facilities account for only 8% of the available places, with the rest being provided by a mixture of for-profit firms (74%) and non-profit charities (18%). The public sector's role is often now that of purchaser (paying the fees of people unable to afford them) and regulator. While the idea that private companies may play a bigger role in the future provision of health care is highly contentious in the UK, the transformation of the residential and nursing home care has attracted little comment. Concerns about the quality of care do emerge from time to time, often stimulated by high profile media investigations, scandals or criminal prosecutions, but there is little or no evidence about whether or not the transformation of the sector from largely public to private provision has had a beneficial effect on those who need the service. This study asks whether there are differences in the quality of care provided by public, non-profit or for-profit facilities in England. We use data on care quality for over 15,000 homes that are provided by the industry regulator in England: the Care Quality Commission (CQC). These data are the results of inspections carried out between April 2011 and October 2015. Controlling for a range of facility characteristics such as age and size, proportional odds logistic regression showed that for-profit facilities have lower CQC quality ratings than public and non-profit providers over a range of measures, including safety, effectiveness, respect, meeting needs and leadership. We discuss the implications of these results for the ongoing debates about the role of for-profit providers of health and social care.
Assuntos
Instituição de Longa Permanência para Idosos/organização & administração , Casas de Saúde/organização & administração , Propriedade/organização & administração , Propriedade/estatística & dados numéricos , Qualidade da Assistência à Saúde/estatística & dados numéricos , Instituição de Longa Permanência para Idosos/economia , Instituição de Longa Permanência para Idosos/normas , Humanos , Casas de Saúde/economia , Casas de Saúde/normas , Organizações sem Fins Lucrativos/organização & administração , Organizações sem Fins Lucrativos/estatística & dados numéricos , Propriedade/economia , Propriedade/normas , Participação do Paciente , Segurança do Paciente/normas , Gestão de Recursos Humanos/normas , Setor Privado/organização & administração , Setor Privado/estatística & dados numéricos , Setor Público/organização & administração , Setor Público/estatística & dados numéricos , Reino UnidoRESUMO
Currently about 160 population-based cancer registries (CRs) in Europe have extensive experience in generating valid information on variation in cancer risk and survival with time and place. Most CRs cover all cancers, but some are confined to specific cancers or to children. They cover 15-55% of the populations in all of the larger member states of the European Union (EU), except the United Kingdom (UK), and 100% coverage in 80% of those with populations below 20 million. The EU FP 7 EUROCOURSE project, which operated in 2009-2013, explored the essential role of CRs in cancer research and public health, and also focused attention on their programme owners (POs) and stakeholders (e.g. cancer societies, oncological professionals, cancer patient groups, and planners, providers and evaluators of cancer care and mass screening). Generally, all CRs depended on their regional and/or national oncological context and were increasingly involved in population-based studies of quality of cancer care, long-term prognosis and quality of life, one third being very active. Within the public health domain, CRs, in addition to describing the variety of environmental and lifestyle-related cancer epidemics, have also contributed actively to aetiologic research by a European databases that showed wide discrepancies in cancer risk and survival across the EU, and in more depth by follow-up of cohorts and recruitment for case-control studies. CRs were also actively contributing to independent evaluation of mass screening as an intervention which affects quality of care and cancer mortality. The potential of CRs for clinical evaluation has grown substantially through interaction with clinical stakeholders and more incidentally biobanks, also with greater involvement of patient groups - with a special focus on elderly patients who generally do not take part in clinical trials. Whereas 25-35% of CRs are active in a range of cancer research areas, the rest have a low profile and usually provide only incidence and survival data. If they are unable to do so because POs and stakeholders do not demand it, they might also be inhibited by data protection restrictions, especially in German and French speaking countries. The value of population-based studies of quality of oncologic care and mass screening and the flawless reputation with regard to data protection of intensively used CRs in the northwest of Europe offered a sharp contrast, although they also follow the 1995 EU guideline on data protection. CRs thus offer a perfect example of what can be done with sensitive and minimal data, also when enriched by linkages to other databases. Intensive use of the data has allowed CR research departments to take on a visible expertise-based profile but a neutral in many public controversies in preventive oncology. Their management and fundability also appeared to benefit from externally classifying the wide array of tumour- or tract-specific intelligence and research activities for the various users in oncology and public health and also patients - who are the source of the data - are better informed. Transparency on what CRs enable may also improve through programmes of research have been deemed essential to our funding POs (ministries, cancer charities, cancer centres or public health institutes) who might benefit from some guidance to - often suboptimal -governance. Therefore, a metaphoric RegisTree has been developed for self-assessment and to clarify CR working methods and domain-specific performance to stakeholders and funding agencies, showing much room for development in many CRs. All in all, CRs are likely to remain unique sources of independent expert information on the burden of cancer, indispensable for cancer surveillance, with increased attention to cancer survivors, up to 4% of the population. Investments in the expanding CR network across Europe offer an excellent way forward for comparative future cancer surveillance with so many epidemiologic and clinical changes ahead.