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Choice is probably one of the most often discussed how can i buy antabuse areas in bioethics, alongside the related concepts of informed consent and autonomy. It is generally, prima facie, portrayed as a good how can i buy antabuse thing. In healthcare, the 2000s saw the UK Prime Minister Tony Blair pursue the ‘Choice Agenda’ where, ‘As capacity expands, so how can i buy antabuse choice will grow. Choice will fundamentally change the balance of power in the NHS.’1 In a consumerist society giving consumers more choice is seen as desirable.

However, choice is not a good in itself, giving people how can i buy antabuse more choice in certain situations can be problematic. I.e. Consumerism drives economic growth and this has a detrimental effect on the environment. And increasing the range of choices a patient is offered is often not the best way to improve the quality of healthcare provision.2 The assumptions behind the valuing of choice need careful unpacking and this Issue of the Journal of Medical Ethics includes papers that explore choice in a number of areas.This Issue's Editor’s choice is Tom Walker’s ‘The Value of Choice’,3 which puts forward a suggestion for the importance of the symbolic value of choice.

There are a number of ways of categorising the value of choice in healthcare. One account sees choice as valuable because it is by choosing that individuals make their life their own. Another account sees choice as valuable for instrumental reasons, people are generally, assuming they are sufficiently informed, the best judge of their own best interests. Walker argues for an additional third reason, the symbolic value of choice, originally proposed by Scanlon.

This sees choice as valuable because being given the option to choose, whether or not one takes it up, not the act of choosing is what makes choice valuable. Being offered the option to choose has a ‘communicative role’ in that it communicates that the person has standing and, for certain types of choice, being denied the opportunity to choose, ‘can be both demeaning and stigmatising.’ Walker states that denying someone the opportunity to choose in certain circumstances does not communicate anything untoward, and he goes to explore how we might determine when not allowing someone a choice would be demeaning. Here he stresses the importance of context in making this determination, it is not fixed by the features of a patient, but what being ‘allowed’ or ‘denied’ the opportunity to make a choice reveals about the healthcare professional’s view of the patient. €˜It communicates that they either see those patients as competent and equal members of society, or that they do not.’ Denying a patient the opportunity to choose an ineffective treatment, for example, does not communicate a negative judgement.

Walker says his account, ‘is intended to supplement existing accounts, not replace them. Because choice is valuable for more than one reason no single account can capture everything that matters.’The importance of pointing to the context of the choice is highlighted in Walker’s paper and it is only through careful examination of the context of that offering that we can determine if, in fact, this is an area where choice should be offered and to whom. Such an examination is carried out in Cameron Beattie’s paper,4 which considers the High Court review of service provision at the youth-focussed gender identity Tavistock Clinic. Beattie disagrees with the High Court’s view that it is ’highly unlikely’ that under-13s, and ’doubtful’ that 14–15 years old, can be competent to consent to puberty blocker therapy for gender dysphoria.

Beattie argues that having puberty blocker therapy is a choice that minors should be given the opportunity to make. In principle, children of that age could be competent to make the decision and that the decision is no more complex than other medical decisions that Gillick competence has conventionally been applied to. Children of this age fall into what Walker calls a ‘transitional’ group, ‘Of particular importance here is the extent to which societal features mean members of some groups find it particularly hard to be recognised as competent and equal members of society. That includes members of groups subject to discrimination….It also includes those who are in what we might call transitional groups such as teenagers struggling to be recognised as competent.’ In the case of denying puberty blockers, the symbolic value of choice is clear.The paper by Zeljka Buturovic5 examines the debate over young childless women requesting sterilisation.

There has been a discussion in the literature that critiques doctors’ hesitancy to accede to this type of request and Buturovic argues against these criticisms. The argument is that rather than a doctor’s refusal to sterilise a young childless woman or putting up obstacles to this being examples of, variously, inconsistency, paternalism, pronatalist bias and discrimination, it is understandable that doctors should be reluctant to follow this unusual request, and such hesitancy is of potential benefit to the young woman. This hesitancy can act as a filter for women who are not seriously committed to sterilisation. This, in essence, is the opposite argument to Beattie’s paper, that the barriers put up to prevent people exercising their choice in this case are warranted.

Young childless women should have their choice scrutinised and if necessary delayed so that it can be ascertained if the choice is a genuine one, and ‘to weed out (the) confused and uncommitted.’ Ultimately, that choice should be available for young childless woman, but it is a choice, given its long-term consequences and likely lack of reversibility, that should be carefully considered.These papers show that choice is a contextually based, complex and multi-facetted concept and approaches such as Walker’s, give us tools to think more carefully about the value of choice and what that means in particular situations. A consideration of choice is not complete without thinking about the effects of our choices on others, and this needs to be at the forefront of any ethical analysis. The ‘choice-agenda’ can often be a proxy for an individualistic conception of personal responsibility and a construction of the ‘good’ of the choice as being solely about that individual’s right to exercise a choice, rather than a more nuanced consideration of the wider, or even limited, effects of that choice on others. Although we have well-worn ways of thinking about harm – harm to others and liberty limiting principles6 – how the exercising of individual choice might harm others is often debatable and unclear, and political with a small and large P!.

For instance, in July 2021 Boris Johnson, the UK prime minister, announced that mask wearing would now be one of personal choice. The government would end the legal obligation to wear a face covering, ‘We will move away from legal restrictions and allow people to make their own informed decisions about how to manage the antabuse.’ Johnson went on to say. €˜Guidance will suggest where you might choose to do so - especially when cases are rising and where you come into contact with people you don't usually meet in enclosed spaces, such as obviously crowded public transport.’7 This mandate for ‘freedom-day’ was criticised in a number of letters in high ranking medical journals,8 9 arguing, ‘The narrative of “caution, vigilance, and personal responsibility” is an abdication of the government’s fundamental duty to protect public health. €œPersonal responsibility” does not work in the face of an airborne, highly contagious infectious disease.

Infectious diseases are a matter of collective, rather than individual, responsibility.’8 In this case, someone’s personal choice to not wear a mask on public transport, where social distancing is impossible, conflicts with someone else’s choice to travel to work as safely as they can. As the critics of this policy and work in public health ethics notes, one person’s choice can have a significant detrimental effect on others, and in situations like this, such as this mask wearing example, where not allowing choice, that is maintaining the legally mandated requirement to wear a face mask (unless there are reasons for an exemption), is an ethically acceptable restriction on ‘personal choice.’ In Walker’s terminology disallowing this choice it is not demeaning or stigmatising, as it applies to everyone, and does not fail to recognise any particular person or group as equal members of society.Choice is often portrayed as a good thing like parenthood and apple pie and the use of choice by politicians to whip up support and bolster their political agendas, as shown by the examples of Blair and Johnson, shows the rhetorical power of the concept. But to really address in what circumstances choices should be offered, to whom and what type of choice, we need theoretical tools to help us understand and be attentive to the wider implications and the papers in this Issue help us to do that.Ethics statementsPatient consent for publicationNot applicable.Ethics approvalThis study does not involve human participants.IntroductionLarge-scale, international data sharing opens the door to the study of so-called ‘Big Data’, which holds great promise for improving patient-centred care. Big Data health research is envisioned to take precision medicine to the next level through increased understanding of disease aetiology and phenotypes, treatment effects, disease management and healthcare expenditure.1 However, lack of public trust is proven to be detrimental to the goals of data sharing.2 The case of care.data in the UK offers a blatant example of a data sharing initiative gone awry.

Criticism predominantly focused on limited public awareness and lack of clarity on the goals of the programme and ways to opt out.3 Citizens are becoming increasingly aware and critical of data privacy issues, and this warrants renewed investments to maintain public trust in data-intensive health research. Here, we use the term data-intensive health research to refer to a practice of grand-scale capture, (re)use and/or linkage of a wide variety of health-related data on individuals.Within the European Union (EU), the recently adopted General Data Protection Regulation (GDPR) (EU 2016/679) addresses some of the concerns the public may have with respect to privacy and data protection. One of the primary goals of the GDPR is to give individuals control over their personal data, most notably through consent.4 Other lawful grounds for the processing of personal data are listed, but it is unclear how these would exactly apply to scientific research. Legal norms remain open to interpretation and thus offer limited guidance to researchers.5 6 In Recital 33, the GDPR actually mentions that additional ethical standards are necessary for the processing of personal data for scientific research.

This indicates a recognised need for entities undertaking activities likely to incite public unease to go beyond compliance with legal requirements.7 Complementary ethical governance then becomes a prerequisite for securing public trust in data-intensive health research.A concept that could be of use in developing ethical governance is that of a ‘social license to operate’.7 The social license captures the notion of a mandate granted by society to certain occupational groups to determine for themselves what constitutes proper conduct, under the condition that such conduct is in line with society’s expectations. The term ‘social license’ was first used in the 1950s by American sociologist Everett Hughes to address relations between professional occupations and society.8 The concept has been used since to frame, for example, corporate social responsibility in the mining industry,9 governance of medical research in general8 and of data-intensive health research more specifically.7 10 As such, adequate ethical governance then becomes a precondition for obtaining a social license for data sharing activities.Key to an informed understanding of the social license is identifying the expectations society may hold with regard to sharing of and access to health data. Here, relevant societal actors are the subjects of Big Data health research, constituting both patients and the general public. Identification of patients’ and public views and attitudes allows for a better understanding of the elements of a socially sanctioned governance framework.

We know of the existence of research papers that have captured these views using quantitative or qualitative methods or a combination of both. So far, systematic reviews of the literature have limited their scope to citizens of specific countries,11 12 qualitative studies only13 or the sharing of genomic data.14 Therefore, we performed an up-to-date narrative review of both quantitative and qualitative studies to explore predominant patient and public views and attitudes towards data sharing for health research.MethodsWe searched the literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar in April 2019 for publications addressing patients’ and public views and attitudes towards the use of health data for research purposes. Synonyms of the following terms (connected by ‘AND’) were used to search titles and/or abstracts of indexed references. Patient or public.

Views. Data sharing. Research (See box 1 and online supplementary appendix 1). To merit inclusion, an article had to report results from an original research study (qualitative, quantitative or mixed methods) on attitudes of individuals regarding use of data for health research.

We restricted eligibility to records published in English and studies performed between 2009 and 2019. We chose 2009 as a lower limit because we assume that patients’ and public perspectives might have changed substantially with increasing awareness and use of digital (health) technologies. Systematic reviews and meta-analyses synthesising the empirical literature on this topic also qualified for review. Reports from stakeholder meet-ups and workshops were eligible as long as they included patients or the public as participants.

Since we were only interested in empirical evidence, expert opinion and publications merely advocating for the inclusion of patients’ and public views in Big Data health research were excluded. Studies that predominantly reported on views of other stakeholders—such as clinicians, researchers, policy makers or industry—were excluded. Articles reporting on conference proceedings, or views regarding (demographic) data collection in low or middle income countries or for public health and care/quality improvement were not considered relevant to this review. Despite our specific interest in data sharing within the European context, we broadened eligibility criteria to include studies performed in the USA, Canada, Australia and New Zealand.

Additional articles were identified through consultation with experts and review of references in the manuscript identified through the literature database searches. Views and attitudes of patients and the public were identified from selected references and reviewed by means of thematic content analysis.Supplemental materialBox 1 Key search terms(patient* OR public OR citizen*)AND(attitude* OR view* OR perspective* OR opinion* OR interview* OR qualitative* OR questionnaire* OR survey*)AND(“data sharing” OR “data access” OR “data transfer”)ANDResearchResultsStudy characteristicsSearches in PubMed (MEDLINE), Embase, Scopus and Google Scholar resulted in a total of 1153 non-unique records (see online supplementary appendix 1). We identified 27 papers for review, including 12 survey or questionnaire studies (quantitative), 8 interview or focus group studies (qualitative), 1 mixed methods study and 6 systematic reviews (see table 1). Most records were excluded because they were not relevant to our research question or because they did not report on findings from original (empirical) research studies.

Ten studies reported on views of patients, 11 on views of the public/citizens and 6 studies combined views of patients, research participants and the public.View this table:Table 1 Study characteristicsWillingness to share data for health researchReviewed papers suggest widespread support for the sharing of data for health research.Four systematic reviews synthesising the views of patients and the public report that willingness for data to be linked and shared for research purposes is high11–14 and that people are generally open to and understand the benefits of data sharing.15Outpatients from a German university hospital who participated in a questionnaire study (n=503) expressed a strong willingness (93%) to give broad consent for secondary use of data,16 and 93% of a sample of UK citizens with Parkinson’s disease (n=306) were willing to share their data.17 Wide support for sharing of data internationally18 19 and in multicentre studies20 was reported among patient participants. Goodman et al found that most participants in a sample of US patients with cancer (n=228) were willing to have their data made available for ‘as many research studies as possible’.21 Regarding the use of anonymised healthcare data for research purposes, a qualitative study found UK rheumatology patients and patient representatives in support of data sharing (n=40).22Public respondents in survey studies recognised the benefits of storing electronic health information,23 and 78.8% (n=151) of surveyed Canadians felt positive about the use of routinely collected data for health research.24 The majority (55%) of a sample of older Swiss citizens (n=40) were in favour of placing genetic data at disposal for research.25 Focus group discussions convened in the UK showed that just over 50% of the members of the Citizens Council of The National Institute for Health and Care Excellence (NICE) said they would have no concerns about NICE using anonymised data derived from personal care records to evaluate treatments,26 and all participants in one qualitative study were keen to contribute to the National Healthcare Service (NHS)-related research.27Motivations to share dataPatients and public participants expressed similar reasons and motivations for their willingness to share data for health research, including contributing to advancements in healthcare, returning incurred benefits and the hope of future personal health benefits (tables 2–4).View this table:Table 2 Patients’ views and attitudes towards the sharing of health data for researchView this table:Table 3 Public views and attitudes towards the sharing of health data for researchView this table:Table 4 Patients’ and public views and attitudes towards the sharing of health data for researchIn the two systematic reviews that addressed this topic, sharing data for ‘the common good’ or ‘the greater good’ was identified as one of the most prevalent motivations.12 14For patients specifically, to help future patients or people with similar health problems was an important reason.14 16 One survey study conducted among German outpatients found that 72% listed returning their own benefits incurred from research as a driver for sharing clinical data.16 Patients with rare disease were also motivated by ‘great hope and trust’ in the development of international databases for health research.19 Among patients, support of research in general,16 the value attached to answering ‘important’ research questions,20 and a desire to contribute to advancements in medicine14 were prevalent reasons in favour of data sharing. Ultimately, the belief that data sharing could lead to improvements in health outcome and care was reported.20Only one original study research paper addressed public motivations. This study found that older citizens mentioned auistic reasons and the greater good in a series of interviews as reasons to share genetic data for research.25 In these interviews, citizens expressed no expectations of an immediate impact or beneficial return but ultimately wanted to help the next generation.Perceived benefits of data sharingPatients and the public perceive that data sharing could lead to better patient care through improved diagnosis and treatment options and more efficient use of resources.

Patients seem to also value the potential of (direct) personal health benefits.Two systematic reviews reported on perceived benefits of data sharing for health research purposes. Howe et al mentioned perceived benefits to research participants or the immediate community, benefits to the public and benefits to research and science.15 Shabani et al also listed accelerating research advancement and maximising the value of resources as perceived benefits.14Surveyed patients perceived that data sharing could help their doctor ‘make better decisions’ about their health (94%, n=3516)28 or result in an increased chance of receiving personalised health information (n=228).21In the original studies reviewed, advantages and potential benefits of data sharing were generally recognised by public and patient participants.22 29 Data sharing was believed to enable the study of long-term treatment effects and rare events, as well as the study of large numbers of people,24 to improve diagnosis25 and treatment quality,20 23 as well as to stimulate innovation30 and identify new treatment options.25 A cross-sectional online survey among patient and citizen groups in Italy (n=280) also identified the perception that data sharing could reduce waste in research.30Perceived risks of data sharingThe most significant risks of data sharing were perceived to results from breaches of confidentiality, commercial use and potential abuse of the data.Systematic reviews report on patients’ and public concerns about confidentiality in general,13 15 sometimes linked to the risk of reidentification,14 concerns about a party's competence in keeping data secure,12 and concerns that personal information could be mined from genomic data.14 A systematic review by Stockdale et al identified concerns among the public (UK and Ireland) about the motivation a party might have to use the data.14Patients in a UK qualitative study (n=40) perceived ‘detrimental’ consequences of data ‘falling into the wrong hands’, such as insurance companies.22 Respondents from the online patient community PatientsLikeMe were fearful of health data being ‘stolen by hackers’ (87%, n=3516).28Original research studies flagged data security and privacy as major public concerns.16 18 20 25 26 29–32 More specifically, many studies found that participants worried about who would have access to the data and about risk of misuses or abuses.13 15 18 25 27 33 A large pan-European survey among respondents from 27 EU member states revealed public concerns about different levels of access by third parties (48.9%–60.6%, n=20 882).23 Overall, reviewed papers suggest that patients and the public are concerned about the use of their data for commercial purposes.14 27 For example, the NICE Citizens Council expressed concerns about the potential for data to be sold to other organisations and used for profit and for purposes other than research.26 The Citizens Council also highlighted the need for transparency about how data are used and how it might be used in the future and for ensuring the research is conducted according to good scientific practice and that data are used to benefit society. Concerns about control and ownership of data were identified13 33 and about re-use of data for purposes that participants do not agree on.30 Fear of discrimination, stigmatisation, exploitation or other repercussions as a consequence of data being shared was widely cited by individuals.14 15 18Barriers to share dataStudies showed that patients and the public rarely mention barriers to data sharing in absolute terms. Rather, acceptance seemed to decrease if data sharing was financially motivated, and if people did not know how and with whom their data would be shared.First, individuals often opposed data sharing if it was motivated by financial gain or profit20 or if the data were shared with commercial/private companies.14 15 In one large pan-European survey (n=20 882), respondents were found to be strongly averse to health insurance companies and private sector pharmaceutical companies viewing their data.23 Second, lack of understanding and awareness around the use of data was viewed as a barrier to data sharing.15 22 Third, lack of transparency and controllability in releasing data were mentioned as factors compromising public trust in data sharing activities.14 22Factors affecting willingness to share dataA wide range of factors were identified from the literature that impacted individuals’ willingness to share data for health research, including geographical factors, age, individual-specific and research-specific characteristics.Geographical factorsMcCormack et al found that European patients’ expressions of trust and attitudes to risk were often affected by the regulatory and cultural practices in their home countries, as well as by the nature of the (rare) disease the patient participant had.18 Shah et al conducted a survey among patients in four Northern European countries (n=855) and found a significant association between country and attitudes towards sharing of deidentified data.34 Interestingly, Dutch respondents were less likely to support sharing of their deidentified data compared with UK citizens.AgeAmong a sample of surveyed patients with Parkinson’s disease (UK), a significant association was found between higher age and increased support for data sharing.17 According to a study based on semistructured interviews with older Swiss citizens, generational differences impacted willingness to share.25 With respect to public attitudes towards data sharing, findings of one systematic review suggest that males and older people are more likely to consent to sharing their medical data.27 A systematic review by Shabani et al suggests that patient and public participants with higher mean age are substantially less worried about privacy and confidentiality than other groups.14Individual-specific characteristicsA systematic review into patients’ and public perspectives on data sharing in the USA suggests that individuals from under-represented minorities are less willing to share data.11 A large multisite survey (n=13 000) among the US public found that willingness to share was associated with self-identified white race, higher educational attainment and lower religiosity.31 In another systematic review, race, gender, age, marital status and/or educational level all seemed to influence how people perceived sensitivity of genomic data and the sharing thereof.14 However, a UK study among patients with Parkinson’s disease found no clear relationship between data sharing and the number of years diagnosed, sex, medication class or health confidence.17Factors that clearly positively affected attitudes towards data sharing were perceptions of the (public) benefits and value of the research,13 20 fewer concerns and fewer information needs,31 and higher trust in and reputation of individuals or organisations conducting and/or overseeing data sharing.12–14 35 Conversely, willingness decreased with higher privacy and confidentiality concerns11 and higher distrust of the government as an oversight body for (genetic) research data.35Research-specific characteristicsPrivacy measures increased people’s willingness to share their data for health research, such as removal of social security numbers (90%, n=3516) and insurance ID (82%, n=3516), the sharing of only summary-level or aggregate data20 and deposition of data in a restricted access online database.29 Expressions of having control over what data are shared and with whom positively affected attitudes towards data sharing.34 In one study, being asked for consent for each study made participants (81%) feel ‘respected and involved’, and 74% agreed that they would feel that they ‘had control’.14 With respect to data sharing without prospective consent, participants became more accepting after being given information about the research processes and selection bias.27 Less support was observed for data sharing due to financial incentives25 and, more specifically, if data would be shared with private companies, such as insurance or pharmaceutical companies.11 25Conditions for sharingWidespread willingness to share data for health research very rarely led to participants’ unconditional support.

Studies showed agreement on the following conditions for responsible data sharing. Value, privacy, minimising risks, data security, transparency, control, information, trust, responsibility and accountability.ValueOne systematic review found that participants found it important that the research as a result of data sharing should be in the public’s interest and should reflect participants’ values.15 The NICE Citizens Council advocated for appropriate systems and good working practices to ensure a consistent approach to research planning, data capture and analysis.26Privacy, risks and data securityThe need to protect individuals’ privacy was considered paramount11 14 21 34 and participants often viewed deidentification of personal data as a top privacy measure.11 24 30 36 One survey among US patients with cancer found that only 20% (n=228) of participants found linkage of individuals with their deidentified data acceptable for return of individual health results and to support further research.21 Secured access to databases was considered an important measure to ensure data security in data sharing activities.30 34 A systematic review of participants’ attitudes towards data sharing showed that people established risk minimisation as another condition for data sharing.15 Findings by Mazor et al suggest that patients only support studies that offer value and minimise security risks.20Transparency and controlConditions regarding transparency were information about how data will be shared and with whom,14 35 the type of research that is to be performed, by whom the research will be performed,16 information on data sharing and monitoring policies and database governance,35 conditions framing access to data and data access agreements,24 28 30 and any partnerships with the pharmaceutical industry.19 More generally, participants expressed the desire to be involved in the data sharing process,35 to be notified when their data are (re)used and to be informed of the results of studies using their data.15 Spencer et al identified use of an electronic interface as a highly valued means to enable greater control over consent choices.22 When asked about the use of personal data for health research by the NHS, UK citizens were typically willing to accept models of consent other than the ones they would prefer.37 Acceptance of consent models with lower levels of individual control was found to be dependent on a number of factors, including adequate transparency, control over detrimental use and commercialisation, and the ability to object, particularly to any processing considered to be inappropriate or particularly sensitive.37Information and trustOne systematic review identified trust in the ability of the original institution to carry out the oversight tasks as a major condition for responsible data sharing.14 Appropriate education and information about data sharing was thought to include public campaigns to inform stakeholders about Big Data32 and information communicated at open days of research institutions (such as NICE) to ensure people understand what their data are being used for and to reassure them that personal data will not be passed on or sold to other organisations.26 The informed consent process for study participation was believed to include information about the fact that individuals’ data could potentially be shared,15 30 the objectives of data sharing and (biobank) research, the study’s data sharing plans,29 governance structure, logistics and accountability.33Responsibility and accountabilityParticipants often placed the responsibility for data sharing practices on the shoulders of researchers. Secondary use of data collected earlier for scientific research was viewed to require a data access committee that involves a researcher from the original research project, a clinician, patient representative and a participant in the original study.36 Researchers of the original study were required to monitor data used by other researchers.36 In terms of accountability, patient and public groups in Italy (n=280) placed high value on sanctions for misuse of data.30 Information on penalties or other consequences of a breach of protection or misuse was considered important by many.31 35DiscussionIn this study, we narratively reviewed 27 papers on patients’ and public views on and attitudes towards the use of health data for scientific research. Studies reported a widespread—though conditional—support for the linkage and sharing of data for health research.

The only outlier seems to be the finding that just over half (n=25) of the NICE Citizens Council answered ‘no’ to the question whether they had any concerns if NICE used anonymised data to fill in the gaps if NICE was not getting enough evidence in ‘the usual ways’.26 However, we hasten to point out that the question about willingness to share is different from the question whether people have concerns or not. In addition, after a 2-day discussion meeting Council members were perhaps more sensitised to the potential concerns regarding data sharing. Therefore, we suggest that the way and context within which questions are phrased may influence the answers people give.Overall, people expressed similar motivations to share their data, perceived similar benefits (despite some variation between patients and citizens), yet at the same time displayed a range of concerns, predominantly relating to confidentiality and data security, awareness about access and control, and potential harms resulting from these risks. Both patient and public participants conveyed that certain factors would increase or reduce their willingness to have their data shared.

For example, the presence of privacy-protecting measures (eg, data deidentification and the use of secured databases) seemed to increase willingness to share, as well as transparency and information about data sharing processes and responsibilities. The identified views and attitudes appeared to come together in the conditions stipulated by participants. Value, privacy and confidentiality, minimising risks, data security, transparency, control, information, trust, responsibility and accountability.In our Introduction, we mentioned that identifying patients’ and public views and attitudes allows for a better understanding of the elements of a socially sanctioned governance framework. In other words, what work should our governance framework be doing in order to obtain a social license?.

This review urges researchers and institutions to address people’s diverse concerns and to make an effort to meet the conditions identified. Without these conditions, institutions lack trustworthiness, which is vital for the proceedings of medicine and biomedical science. As such, a social license is not a ‘nice to have’ but a ‘need to have’. Our results also confirm that patients and the public indeed care about more than legal compliance alone, and wish to be engaged through information, transparency and control.

This work supports the findings of a recent systematic review into ethical principles of data sharing as specified in various international ethical guidelines and literature.38 What this body of research implies is considerable diversity of values and beliefs both between and within countries.The goal of this narrative review was to identify the most internationally dominant, aggregated patient and public views about the broad topic of data sharing for health research. We deliberately opted for the methodology of a narrative review rather than a systematic review. Most narrative reviews deal with a broad range of issues to a given topic rather than addressing a particular topic in depth.39 This means narrative reviews may be most useful for obtaining a broad perspective on a topic, and that they often are less useful in generating quantitative answers to specific clinical questions. However, because narrative reviews do not require specification of the search and selection strategy and the way of critically appraising literature can be variable, the connection between evidence generated by narrative reviews and (clinical) recommendations is less rigorous and risk of bias exists.

This is something to take into account in this study. A risk of bias assessment was not possible due to the heterogeneity of the findings. We acknowledge that our methodological choices may have affected the discriminative power or granularity of our findings. For example, there is a difference between sharing of routinely collected health data versus secondary use of health data collected for research purposes.

And we can only make loose assumptions about potential differences between patient and public views.In addition, we should mention that this work is centred around studies conducted in Western countries as the whole Big Data space and literature is dominated by Western countries, higher socioeconomic status and Caucasians. However, most of the disease burden globally and within countries is most probably not represented in the ‘Big Data’ and so we have to stress the lack of generalisability to large parts of the world.Nevertheless, we believe our findings point towards essential elements of a governance framework for data sharing for health research purposes. If we are to conclude that the identified conditions ought to act as the pillars of a governance framework, the next step is to identify how these conditions could be practically operationalised. For example, if people value information, transparency and control, what type of consent is most likely to valorise these conditions?.

And what policy for returning research results would be desirable?. Once we know what to value, we can start thinking about the ways to acknowledge that value. A new challenge arising here, however, is what to do when people hold different or even conflicting values or preferences. Discrete choice experiments could help to test people’s preferences regarding specific topics, such as preferred modes of informed consent.

Apart from empirical work, conceptual analysis is needed to clarify how public trust, trustworthiness of institutions and accountability are interconnected.ConclusionThis narrative review suggests widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of health research, they report a number of significant concerns and related conditions. We believe identified conditions (eg, social value, data security, transparency and accountability) ought to be operationalised in a value-based governance framework that incorporates the diverse patient and public values, needs and interests, and which reflects the way these same conditions are met, to strengthen the social license for Big Data health research.Ethics statementsPatient consent for publicationNot required.AcknowledgmentsWe thank Susanne Løgstrup (European Heart Network) and Evert-Ben van Veen (Medlaw) for their valuable feedback during various stages in drafting the manuscript..

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The Translational Research Institute for Space Health (TRISH), which we are affiliated with, is closely partnered with NASA to fund innovative space health research projects with two goals. To help astronauts stay healthy and to apply the lessons learned from space health research to benefit why is antabuse not available everyone on Earth. Advances in physical and mental health surveillance, prevention, and medical treatments are still needed for astronaut health care, and can push forward technology to monitor, treat, and prevent conditions on terra firma.In spaceflight, keeping humans healthy is a challenge because the environment — lack of gravity, radiation, and close quarters — is hostile to physical and mental health.

An astronaut crew, most of whom are not doctors, must take care of themselves when on a mission to the International Space Station, the moon, or Mars, and avoid becoming sick or depressed.Over the past year, while socially isolating at home, most of us have experienced a situation similar to what life would be like for astronauts living in a confined space with crewmates on a long-duration mission to Mars, through which they must remain mentally resilient. Space health researchers are refining next-generation probiotics with why is antabuse not available the potential to combat mental health concerns. Why probiotics?.

The vast collection of microorganisms that live in each human’s gut, known as the microbiome, is now thought to influence overall health, including mood and behavior. It’s an area of why is antabuse not available research that will have applications for everyone. Monitoring the health of astronauts on spaceflights offers the same challenges as monitoring the health of Earthlings during antabuse isolation.

The constraints of why is antabuse not available the spaceflight environment call for entirely passive new technology that can monitor body systems for change. Emerald Innovations, a company founded by Dina Katabi, has developed a passive monitoring system that can detect breathing rate and body movement from analyzing radio frequency signals similar to those used by Wi-Fi and mobile networks. This AI-aided system has been shown to predict whether a person is getting better or sicker.

The technology was tested in why is antabuse not available a nursing home during the alcoholism treatment antabuse. This technology could enable medical staff in nursing homes and hospitals to minimize contact with sick patients while still being able to closely monitor them. The Emerald research is one of many projects supported by TRISH.Commercial space endeavors can help develop these and other cutting-edge health technologies for use by NASA because, as private companies, they have the advantage of moving quickly.

The new era of private-sector space explorers will deepen why is antabuse not available the health care knowledge base. In making space travel more accessible and routine, a broader spectrum of space travelers will present challenges and test solutions that can be used to improve the well-being of people the world over with a range of medical conditions.While astronauts have primarily been middle-aged white men in peak physical condition, today’s commercial space travelers come in all shapes, sizes, and ages. As a result, organizations like TRISH that fund space health research are excited to support research on both traditional astronauts and non-traditional, private passengers to ensure that the impact of space missions can be translated for everyone on Earth.

TRISH partnered with why is antabuse not available the SpaceX Inspiration4 (I4) mission. Its four-member crew collected research-grade measurements of their heart rates and rhythm, movement, sleep, and blood oxygen saturation data. They performed a why is antabuse not available series of tests to assess changes in their behavioral and cognitive performance.

They also scanned several organ systems via a Butterfly IQ+ Uasound device, which is designed with artificial intelligence guidance for non-medical experts. They collected blood and other body fluid samples before flight so that researchers can look for markers of how they adapted to space. The I4 why is antabuse not available crew also collected drops of their blood while in orbit and tested them for markers of immune function and inflammation using a state-of-the-art miniaturized device called the vertical flow immunoassay.

All this information is being collected and banked for future use by space researchers and health care innovators.At first glance, the inaugural trio of commercial spaceflights may appear to be little more than a new playground for the elite. But a deeper look reveals it to be the beginning of a new era of space health research that will benefit all humans exploring space as well as those who stare up at it in wonder.Asha Collins is a biologist and the general manager of biobanks at DNAnexus. Lisa Suennen is an entrepreneur and venture capitalist, and the senior why is antabuse not available managing director of Manatt Digital and Technology.

Armen Kherlopian is a biophysicist and founding partner of BAJ Accelerator. They are members of the Scientific Advisory Board for the Translational Research Institute for Space Health..

SpaceX Inspiration4, funded how can i buy antabuse by billionaire read the full info here Jared Isaacman, recently orbited the Earth for three days with an all-civilian crew. It was preceded by two shorter spaceflights also funded by billionaires. Virgin Galactic by Richard Branson and Blue Origin by Jeff how can i buy antabuse Bezos.After the excitement over the novelty of these space trips waned, many people wondered.

Why don’t these billionaires spend their money to help with problems we already have on Earth rather than spending it on exclusive jaunts to space?. The mission of commercial space companies is to take people away from the Earth. But given the likelihood humanity will long be Earth-bound, trips into the thermosphere and beyond create incredible opportunities to explore space while at how can i buy antabuse the same time making the Earth a better place by creating new, otherwise unattainable knowledge that advances the field of medicine.

Fortunately, some of the commercial spaceflight companies are already partnering with NASA and its affiliates to take advantage of this moment to contribute to scientific research that enhances human health.advertisement Because what happens to the human body in space so closely approximates what happens to people as they age on Earth, spaceflight has enhanced knowledge about human health and will continue to do so. The antabuse may have brought telemedicine out of the shadows, but many of the capabilities that enable it were put in place by the space program in the 1970s and have been tested ever since. NASA had to rely on telemedicine to how can i buy antabuse keep its astronauts healthy.

The same technology that pumps hundreds of thousands of gallons of fuel through the Space Shuttle’s engines today keeps adults and children alive with heart-assist implants while they wait indefinitely for a heart from an organ donor. Early space missions to the moon helped us define better ways to make food safer how can i buy antabuse to eat and contributed to a universally adopted management system for food safety, the Hazard Analysis Critical Control Point (HACCP).advertisement These three examples demonstrate how space-related inventions have advanced health care for the many, not just the few and the wealthiest. These innovations arose during the quest to visit space because the science that keeps astronauts healthy directly translates to practices and products that keep citizens healthy.NASA has been making steady progress in solving health care challenges in space since its inception.

The Translational Research Institute for Space Health (TRISH), which we are affiliated with, is closely partnered with NASA to fund innovative space health research projects with two goals. To help astronauts stay healthy and to apply the lessons learned from space health research to benefit how can i buy antabuse everyone on Earth. Advances in physical and mental health surveillance, prevention, and medical treatments are still needed for astronaut health care, and can push forward technology to monitor, treat, and prevent conditions on terra firma.In spaceflight, keeping humans healthy is a challenge because the environment — lack of gravity, radiation, and close quarters — is hostile to physical and mental health.

An astronaut crew, most of whom are not doctors, must take care of themselves when on a mission to the International Space Station, the moon, or Mars, and avoid becoming sick or depressed.Over the past year, while socially isolating at home, most of us have experienced a situation similar to what life would be like for astronauts living in a confined space with crewmates on a long-duration mission to Mars, through which they must remain mentally resilient. Space health researchers are refining next-generation probiotics with the potential to combat mental health concerns how can i buy antabuse. Why probiotics?.

The vast collection of microorganisms that live in each human’s gut, known as the microbiome, is now thought to influence overall health, including mood and behavior. It’s an how can i buy antabuse area of research that will have applications for everyone. Monitoring the health of astronauts on spaceflights offers the same challenges as monitoring the health of Earthlings during antabuse isolation.

The constraints of the spaceflight environment how can i buy antabuse call for entirely passive new technology that can monitor body systems for change. Emerald Innovations, a company founded by Dina Katabi, has developed a passive monitoring system that can detect breathing rate and body movement from analyzing radio frequency signals similar to those used by Wi-Fi and mobile networks. This AI-aided system has been shown to predict whether a person is getting better or sicker.

The technology was tested in a nursing home during the alcoholism treatment how can i buy antabuse antabuse. This technology could enable medical staff in nursing homes and hospitals to minimize contact with sick patients while still being able to closely monitor them. The Emerald research is one of many projects supported by TRISH.Commercial space endeavors can help develop these and other cutting-edge health technologies for use by NASA because, as private companies, they have the advantage of moving quickly.

The new era of private-sector how can i buy antabuse space explorers will deepen the health care knowledge base. In making space travel more accessible and routine, a broader spectrum of space travelers will present challenges and test solutions that can be used to improve the well-being of people the world over with a range of medical conditions.While astronauts have primarily been middle-aged white men in peak physical condition, today’s commercial space travelers come in all shapes, sizes, and ages. As a result, organizations like TRISH that fund space health research are excited to support research on both traditional astronauts and non-traditional, private passengers to ensure that the impact of space missions can be translated for everyone on Earth.

TRISH partnered with the how can i buy antabuse SpaceX Inspiration4 (I4) mission. Its four-member crew collected research-grade measurements of their heart rates and rhythm, movement, sleep, and blood oxygen saturation data. They performed a series of tests to assess changes how can i buy antabuse in their behavioral and cognitive performance.

They also scanned several organ systems via a Butterfly IQ+ Uasound device, which is designed with artificial intelligence guidance for non-medical experts. They collected blood and other body fluid samples before flight so that researchers can look for markers of how they adapted to space. The I4 crew also collected drops of their blood while in orbit and tested them for markers of immune function and inflammation using a state-of-the-art how can i buy antabuse miniaturized device called the vertical flow immunoassay.

All this information is being collected and banked for future use by space researchers and health care innovators.At first glance, the inaugural trio of commercial spaceflights may appear to be little more than a new playground for the elite. But a deeper look reveals it to be the beginning of a new era of space health research that will benefit all humans exploring space as well as those who stare up at it in wonder.Asha Collins is a biologist and the general manager of biobanks at DNAnexus. Lisa Suennen is an entrepreneur and venture how can i buy antabuse capitalist, and the senior managing director of Manatt Digital and Technology.

Armen Kherlopian is a biophysicist and founding partner of BAJ Accelerator. They are members of the Scientific Advisory Board for the Translational Research Institute for Space Health..

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The death toll in 2019 http://biohof-paulsen.de/buy-cipro-online/ was 50 per cent higher than a historic low reached in 2016, and all WHO regions saw an increase in cases, adding up to a global antabuse 125 mg total of 869,770. This year there have been fewer cases, but the alcoholism treatment antabuse has further set back vaccination efforts, with more than 94 million people at risk of missing antabuse 125 mg measles treatments in 26 countries that have paused their vaccination campaigns, including many countries with ongoing outbreaks. Measles ‘hasn’t gone away’ “Before there was a alcoholism crisis, the world was grappling with a antabuse 125 mg measles crisis, and it has not gone away”, Henrietta Fore, UN Children’s Fund (UNICEF) Executive Director, said in a statement. €œWhile health systems are strained by the alcoholism treatment antabuse, we must not allow our fight against one deadly disease to come at the expense of our fight against another.” Measles is entirely preventable, but success requires 95 per cent of children to be vaccinated on time with two doses of measles-containing treatments (MCV1 and MCV2). MCV1 coverage has been stagnant globally for more than a decade at antabuse 125 mg between 84 and 85 per cent, while MCV2 coverage has been steadily increasing but is still only at 71 percent.

Natasha Crowcroft, senior technical advisor antabuse 125 mg on measles and rubella at the WHO, said that the good news was that measles vaccinations had saved more than 25.5 million lives globally since 2000. But the low treatment coverage meant the number of unprotected children was growing every year antabuse 125 mg. Stalled coverage “The big issue is not actually large holes in coverage, it's the stalling in coverage”, Dr. Crowcroft told antabuse 125 mg a news conference in Geneva. “It's a bit like, you know, tinder for a forest fire, it reaches a point where an antabuse 125 mg outbreak really takes off.

And that's what we saw in 2019, with the almost explosive outbreaks in areas that have had inadequate coverage over many years”, Dr. Crowcroft said antabuse 125 mg. “If you have coverage around about that 80 per cent level, then you get the sense that things are going okay, but they're not really, and eventually you see these large outbreaks.” UNICEF/Mahmood FadhelA child smiles while receiving a antabuse 125 mg Measles and Rubella vaccination during a UNICEF-supported mobile vaccination campaign in Aden, Yemen, February 2019.treatment hesitancy Weak health systems and the inability to reach children were the main problem globally, and treatment hesitancy was an additional problem in some countries, she said. Last week UNICEF and WHO issued a joint call to action to avert major measles and polio epidemics, calling for an antabuse 125 mg additional $255 million over the next three years to address dangerous measles immunity gaps in the 45 countries at the highest risk of an imminent outbreak. Countries that have recently suffered large measles outbreaks include the Democratic Republic of Congo (DRC), Madagascar, Central African Republic (CAR), Georgia, Kazakhstan, North Macedonia, Samoa, Tonga, and Ukraine, Dr.

Crowcroft said."We now have the consensus and the commitment of every country to work in an integrated, cross-cutting manner in tackling all the neglected tropical diseases", said Dr Ren Minghui, WHO Assistant Director-General for Universal Health Coverage, Communicable and Noncommunicable Diseases.2030 targetsThe freshly-inked roadmap sets global targets and milestones to prevent, control, eliminate and eradicate 20 neglected tropical diseases and disease groups, which affect hundreds of millions of people.It replaces the first blueprint published in 2012, whose targets will not be achieved, despite significant progress, WHO explained.In addition to a focus on improved coordination and collaboration among health partners in the next decade in all countries, another distinct feature is a drive for greater ownership by governments and communities.The 2030 targets include a 90 per cent reduction in the number of people requiring treatment for neglected tropical diseases and antabuse 125 mg a call to eradicate dracunculiasis – also known as Guinea-worm disease - and the chronic skin disease yaws, that affects mainly children below 15 years of age.“The new road map addresses critical gaps across multiple diseases, integrates and mainstreams approaches within national health systems and coordinates action across sectors," said Dr Mwelecele Ntuli Malecela, Director, WHO Department of Control of Neglected Tropical Diseases. "It also provides us with opportunities to evaluate, assess and adjust programmatic actions as needed over the next decade."Vertical v horizontalThe emphasis of the new approach is on sustainability and follows a decades-old discussion about the relative merits of so-called “vertically” funded programmes that target specific illnesses, compared with the longer-term “horizontal” approach that involves comprehensive primary health care services offering greater overall protection."To do so effectively…countries must change their operating models and culture to facilitate greater ownership of antabuse 125 mg (disease eradication) programmes”, Dr Minghui added, in a call for “smarter investments and high-level political commitment” to reduce the social and economic consequences of neglected tropical diseases.Drugs arsenal neededWhile most neglected tropical disease-control programmes rely on medicines to treat sufferers, WHO has also warned that emerging drug resistance threatens decades of advances.It remains crucial to monitor drug efficacy closely and develop “an appropriate arsenal of second-line drugs” to ensure that populations continue to be protected against neglected tropical diseases, it said.In a related development, alcoholism treatment had played its part in making communities more vulnerable, the UN agency noted, as some people have taken antibiotics in the mistaken belief that they would protect them from the antabuse.Antibiotics alarmWhile some countries have seen their antibiotic use dramatically decline during antabuse lockdowns, physical distancing and improved hand and respiratory hygiene, “in other situations, antibiotic use has risen alarmingly”, WHO said.These challenges are on the agenda at the annual World Antimicrobial Awareness Week (WAAW) from 18-24 November.Its aims are to increase awareness and understanding of global antimicrobial resistance and encourage best practices among members of the public, health workers and policy-makers, to avoid the further emergence and spread of drug-resistant s.Meningitis and epilepsy resolutionsMember States recommended the adoption of two resolutions on meningitis control and epilepsy at the World Health Assembly on Thursday.Committee A, which focuses on programme and budget matters, decided to recommend the adoption of the first-ever resolution on meningitis, which would approve a global roadmap to defeat meningitis by 2030 – a disease that kills 300,000 people annually and leaves one in five of those affected with devastating long-term consequences.The Committee also recommended the adoption of a resolution calling for scaled-up and integrated action on epilepsy and other neurological disorders such as stroke, migraine and dementia. Neurological disorders are the leading cause of disability and the second leading cause of death worldwide..

The death toll in 2019 was 50 per cent higher than a historic low reached in 2016, and all WHO how can i buy antabuse regions saw an increase in cases, adding up to a global total of 869,770. This year there have been fewer cases, but the alcoholism treatment antabuse has further set back vaccination efforts, with more than 94 million people at risk of missing measles treatments how can i buy antabuse in 26 countries that have paused their vaccination campaigns, including many countries with ongoing outbreaks. Measles ‘hasn’t gone how can i buy antabuse away’ “Before there was a alcoholism crisis, the world was grappling with a measles crisis, and it has not gone away”, Henrietta Fore, UN Children’s Fund (UNICEF) Executive Director, said in a statement. €œWhile health systems are strained by the alcoholism treatment antabuse, we must not allow our fight against one deadly disease to come at the expense of our fight against another.” Measles is entirely preventable, but success requires 95 per cent of children to be vaccinated on time with two doses of measles-containing treatments (MCV1 and MCV2). MCV1 coverage has been stagnant globally for more than a decade at between 84 and how can i buy antabuse 85 per cent, while MCV2 coverage has been steadily increasing but is still only at 71 percent.

Natasha Crowcroft, senior technical advisor how can i buy antabuse on measles and rubella at the WHO, said that the good news was that measles vaccinations had saved more than 25.5 million lives globally since 2000. But the low treatment coverage meant the how can i buy antabuse number of unprotected children was growing every year. Stalled coverage “The big issue is not actually large holes in coverage, it's the stalling in coverage”, Dr. Crowcroft told a news conference how can i buy antabuse in Geneva. “It's a bit like, you know, tinder for a forest fire, it reaches a point where an outbreak really takes how can i buy antabuse off.

And that's what we saw in 2019, with the almost explosive outbreaks in areas that have had inadequate coverage over many years”, Dr. Crowcroft said how can i buy antabuse. “If you have coverage around about that 80 per cent level, then how can i buy antabuse you get the sense that things are going okay, but they're not really, and eventually you see these large outbreaks.” UNICEF/Mahmood FadhelA child smiles while receiving a Measles and Rubella vaccination during a UNICEF-supported mobile vaccination campaign in Aden, Yemen, February 2019.treatment hesitancy Weak health systems and the inability to reach children were the main problem globally, and treatment hesitancy was an additional problem in some countries, she said. Last week UNICEF and WHO issued a joint call to action to avert major measles and polio epidemics, calling how can i buy antabuse for an additional $255 million over the next three years to address dangerous measles immunity gaps in the 45 countries at the highest risk of an imminent outbreak. Countries that have recently suffered large measles outbreaks include the Democratic Republic of Congo (DRC), Madagascar, Central African Republic (CAR), Georgia, Kazakhstan, North Macedonia, Samoa, Tonga, and Ukraine, Dr.

Crowcroft said."We now have the consensus and the commitment of every country to work in an integrated, cross-cutting manner in tackling all the neglected tropical diseases", said Dr Ren Minghui, WHO Assistant Director-General for Universal Health Coverage, Communicable and Noncommunicable Diseases.2030 targetsThe freshly-inked roadmap how can i buy antabuse sets global targets and milestones to prevent, control, eliminate and eradicate 20 neglected tropical diseases and disease groups, which affect hundreds of millions of people.It replaces the first blueprint published in 2012, whose targets will not be achieved, despite significant progress, WHO explained.In addition to a focus on improved coordination and collaboration among health partners in the next decade in all countries, another distinct feature is a drive for greater ownership by governments and communities.The 2030 targets include a 90 per cent reduction in the number of people requiring treatment for neglected tropical diseases and a call to eradicate dracunculiasis – also known as Guinea-worm disease - and the chronic skin disease yaws, that affects mainly children below 15 years of age.“The new road map addresses critical gaps across multiple diseases, integrates and mainstreams approaches within national health systems and coordinates action across sectors," said Dr Mwelecele Ntuli Malecela, Director, WHO Department of Control of Neglected Tropical Diseases. "It also provides us with opportunities to evaluate, assess and adjust programmatic actions as needed over the next decade."Vertical v horizontalThe emphasis of the new approach is on sustainability and follows a decades-old discussion about the relative merits of so-called “vertically” funded programmes that target specific illnesses, compared with the longer-term “horizontal” approach that involves comprehensive primary health care services offering greater overall protection."To do so effectively…countries must change their operating models and culture to facilitate greater ownership of (disease eradication) programmes”, Dr Minghui added, in a call for “smarter investments and high-level political commitment” to reduce the social and economic consequences of neglected tropical diseases.Drugs arsenal neededWhile most neglected tropical disease-control programmes rely on medicines to treat sufferers, WHO has also warned that emerging drug resistance threatens decades of advances.It remains how can i buy antabuse crucial to monitor drug efficacy closely and develop “an appropriate arsenal of second-line drugs” to ensure that populations continue to be protected against neglected tropical diseases, it said.In a related development, alcoholism treatment had played its part in making communities more vulnerable, the UN agency noted, as some people have taken antibiotics in the mistaken belief that they would protect them from the antabuse.Antibiotics alarmWhile some countries have seen their antibiotic use dramatically decline during antabuse lockdowns, physical distancing and improved hand and respiratory hygiene, “in other situations, antibiotic use has risen alarmingly”, WHO said.These challenges are on the agenda at the annual World Antimicrobial Awareness Week (WAAW) from 18-24 November.Its aims are to increase awareness and understanding of global antimicrobial resistance and encourage best practices among members of the public, health workers and policy-makers, to avoid the further emergence and spread of drug-resistant s.Meningitis and epilepsy resolutionsMember States recommended the adoption of two resolutions on meningitis control and epilepsy at the World Health Assembly on Thursday.Committee A, which focuses on programme and budget matters, decided to recommend the adoption of the first-ever resolution on meningitis, which would approve a global roadmap to defeat meningitis by 2030 – a disease that kills 300,000 people annually and leaves one in five of those affected with devastating long-term consequences.The Committee also recommended the adoption of a resolution calling for scaled-up and integrated action on epilepsy and other neurological disorders such as stroke, migraine and dementia. Neurological disorders are the leading cause of disability and the second leading cause of death worldwide..

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Extension of antabuse buy http://michaelowengolf.com/homepage-2/ timeline for publication of final rule. This notice announces an extension of the timeline for publication of a Medicare final rule in accordance with the Social Security Act, which allows us to extend the timeline for publication of the final rule. As of August 26, 2020, the timeline for publication of the final rule to finalize the provisions of the October 17, 2019 proposed rule (84 FR 55766) is extended until August 31, 2021. Start Further Info Lisa antabuse buy O. Wilson, (410) 786-8852.

End Further Info End Preamble Start Supplemental Information In the October 17, 2019 Federal Register (84 FR 55766), we published a proposed rule that addressed undue regulatory impact and burden of the physician self-referral law. The proposed rule was issued antabuse buy in conjunction with the Centers for Medicare &. Medicaid Services' (CMS) Patients over Paperwork initiative and the Department of Health and Human Services' (the Department or HHS) Regulatory Sprint to Coordinated Care. In the proposed rule, we proposed exceptions to the physician self-referral law for certain value-based compensation arrangements between or among physicians, providers, and suppliers. A new exception for certain arrangements under which a physician receives limited remuneration for items antabuse buy or services actually provided by the physician.

A new exception for donations of cybersecurity technology and related services. And amendments to the existing exception for electronic health records (EHR) items and services. The proposed rule also provides critically necessary guidance for physicians and health care providers and suppliers whose antabuse buy financial relationships are governed by the physician self-referral statute and regulations. This notice announces an extension of the timeline for publication of the final rule and the continuation of effectiveness of the proposed rule. Section 1871(a)(3)(A) of the Social Security Act (the Act) requires us to establish and publish a regular timeline for the publication of final regulations based on the previous publication of a proposed regulation.

In accordance with section 1871(a)(3)(B) antabuse buy of the Act, the timeline may vary among different regulations based on differences in the complexity of the regulation, the number and scope of comments received, and other relevant factors, but may not be longer than 3 years except under exceptional circumstances. In addition, in accordance with section 1871(a)(3)(B) of the Act, the Secretary may extend the initial targeted publication date of the final regulation if the Secretary, no later than the regulation's previously established proposed publication date, publishes a notice with the new target date, and such notice includes a brief explanation of the justification for the variation. We announced in the Spring 2020 Unified Agenda (June 30, 2020, www.reginfo.gov) that we would issue the final rule in August 2020. However, we are still working through the Start Printed Page 52941complexity of the issues raised by comments received on the proposed rule and therefore we are not antabuse buy able to meet the announced publication target date. This notice extends the timeline for publication of the final rule until August 31, 2021.

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2020-18867 Filed 8-26-20. 8:45 am]BILLING CODE 4120-01-PThe Centers for Medicare &. Medicaid Services (CMS) today announced efforts underway to antabuse buy support Louisiana and Texas in response to Hurricane Laura. On August 26, 2020, Department of Health and Human Services (HHS) Secretary Alex Azar declared public health emergencies (PHEs) in these states, retroactive to August 22, 2020 for the state of Louisiana and to August 23, 2020 for the state of Texas. CMS is working to ensure hospitals and other facilities can continue operations and provide access to care despite the effects of Hurricane Laura.

CMS provided numerous waivers to health care providers during the current alcoholism disease 2019 (alcoholism treatment) antabuse antabuse buy to meet the needs of beneficiaries and providers. The waivers already in place will be available to health care providers to use during the duration of the alcoholism treatment PHE determination timeframe and for the Hurricane Laura PHE. CMS may waive certain additional Medicare, Medicaid, and Children’s Health Insurance Program (CHIP) requirements, create special enrollment opportunities for individuals to access healthcare quickly, and take steps to ensure dialysis patients obtain critical life-saving services. “Our thoughts are with everyone who is in the path of this powerful and dangerous hurricane and CMS is doing antabuse buy everything within its authority to provide assistance and relief to all who are affected,” said CMS Administrator Seema Verma. €œWe will partner and coordinate with state, federal, and local officials to make sure that in the midst of all of the uncertainty a natural disaster can bring, our beneficiaries will not have to worry about access to healthcare and other crucial life-saving and sustaining services they may need.” Below are key administrative actions CMS will be taking in response to the PHEs declared in Louisiana and Texas.

Waivers and Flexibilities for Hospitals and Other Healthcare Facilities. CMS has already waived many Medicare, Medicaid, and CHIP requirements for facilities antabuse buy. The CMS Dallas Survey &. Enforcement Division, under the Survey Operations Group, will grant other provider-specific requests for specific types of hospitals and other facilities in Louisiana and Texas. These waivers, antabuse buy once issued, will help provide continued access to care for beneficiaries.

For more information on the waivers CMS has granted, visit. Www.cms.gov/emergency. Special Enrollment Opportunities for Hurricane Victims. CMS will make available special enrollment periods for certain Medicare beneficiaries and certain individuals seeking health plans offered through antabuse buy the Federal Health Insurance Exchange. This gives people impacted by the hurricane the opportunity to change their Medicare health and prescription drug plans and gain access to health coverage on the Exchange if eligible for the special enrollment period.

For more information, please visit. Disaster Preparedness Toolkit for State antabuse buy Medicaid Agencies. CMS developed an inventory of Medicaid and CHIP flexibilities and authorities available to states in the event of a disaster. For more information and to access the toolkit, visit. Https://www.medicaid.gov/state-resource-center/disaster-response-toolkit/index.html.

Dialysis Care. CMS is helping patients obtain access to critical life-saving services. The Kidney Community Emergency Response (KCER) program has been activated and is working with the End Stage Renal Disease (ESRD) Network, Network 13 – Louisiana, and Network 14 - Texas, to assess the status of dialysis facilities in the potentially impacted areas related to generators, alternate water supplies, education and materials for patients and more. The KCER is also assisting patients who evacuated ahead of the storm to receive dialysis services in the location to which they evacuated. Patients have been educated to have an emergency supply kit on hand including important personal, medical and insurance information.

Contact information for their facility, the ESRD Network hotline number, and contact information of those with whom they may stay or for out-of-state contacts in a waterproof bag. They have also been instructed to have supplies on hand to follow a three-day emergency diet. The ESRD Network 8 – Mississippi hotline is 1-800-638-8299, Network 13 – Louisiana hotline is 800-472-7139, the ESRD Network 14 - Texas hotline is 877-886-4435, and the KCER hotline is 866-901-3773. Additional information is available on the KCER website www.kcercoalition.com. During the 2017 and 2018 hurricane seasons, CMS approved special purpose renal dialysis facilities in several states to furnish dialysis on a short-term basis at designated locations to serve ESRD patients under emergency circumstances in which there were limited dialysis resources or access-to-care problems due to the emergency circumstances.

Medical equipment and supplies replacements. Under the COVD-19 waivers, CMS suspended certain requirements necessary for Medicare beneficiaries who have lost or realized damage to their durable medical equipment, prosthetics, orthotics and supplies as a result of the PHE. This will help to make sure that beneficiaries can continue to access the needed medical equipment and supplies they rely on each day. Medicare beneficiaries can contact 1-800-MEDICARE (1-800-633-4227) for assistance. Ensuring Access to Care in Medicare Advantage and Part D.

During a public health emergency, Medicare Advantage Organizations and Part D Plan sponsors must take steps to maintain access to covered benefits for beneficiaries in affected areas. These steps include allowing Part A/B and supplemental Part C plan benefits to be furnished at specified non-contracted facilities and waiving, in full, requirements for gatekeeper referrals where applicable. Emergency Preparedness Requirements. Providers and suppliers are expected to have emergency preparedness programs based on an all-hazards approach. To assist in the understanding of the emergency preparedness requirements, CMS Central Office and the Regional Offices hosted two webinars in 2018 regarding Emergency Preparedness requirements and provider expectations.

One was an all provider training on June 19, 2018 with more than 3,000 provider participants and the other an all-surveyor training on August 8, 2018. Both presentations covered the emergency preparedness final rule which included emergency power supply. 1135 waiver process. Best practices and lessons learned from past disasters. And helpful resources and more.

Both webinars are available at https://qsep.cms.gov/welcome.aspx. CMS also compiled a list of Frequently Asked Questions (FAQs) and useful national emergency preparedness resources to assist state Survey Agencies (SAs), their state, tribal, regional, local emergency management partners and health care providers to develop effective and robust emergency plans and tool kits to assure compliance with the emergency preparedness rules. The tools can be located at. CMS Regional Offices have provided specific emergency preparedness information to Medicare providers and suppliers through meetings, dialogue and presentations. The regional offices also provide regular technical assistance in emergency preparedness to state agencies and staff, who, since November 2017, have been regularly surveying providers and suppliers for compliance with emergency preparedness regulations.

Additional information on the emergency preparedness requirements can be found here. Https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_z_emergprep.pdf CMS will continue to work with all geographic areas impacted by Hurricane Laura. We encourage beneficiaries and providers of healthcare services that have been impacted to seek help by visiting CMS’ emergency webpage (www.cms.gov/emergency).

This notice announces an extension of the timeline for publication of a Medicare final rule in accordance with the Social Security Act, which buy real antabuse online allows us to extend the timeline for publication of the how can i buy antabuse final rule. As of August 26, 2020, the timeline for publication of the final rule to finalize the provisions of the October 17, 2019 proposed rule (84 FR 55766) is extended until August 31, 2021. Start Further Info Lisa O.

Wilson, (410) how can i buy antabuse 786-8852. End Further Info End Preamble Start Supplemental Information In the October 17, 2019 Federal Register (84 FR 55766), we published a proposed rule that addressed undue regulatory impact and burden of the physician self-referral law. The proposed rule was issued in conjunction with the Centers for Medicare &.

Medicaid Services' (CMS) Patients over Paperwork initiative and the Department of Health and Human Services' (the Department how can i buy antabuse or HHS) Regulatory Sprint to Coordinated Care. In the proposed rule, we proposed exceptions to the physician self-referral law for certain value-based compensation arrangements between or among physicians, providers, and suppliers. A new exception for certain arrangements under which a physician receives limited remuneration for items or services actually provided by the physician.

A new how can i buy antabuse exception for donations of cybersecurity technology and related services. And amendments to the existing exception for electronic health records (EHR) items and services. The proposed rule also provides critically necessary guidance for physicians and health care providers and suppliers whose financial relationships are governed by the physician self-referral statute and regulations.

This notice announces an extension of the timeline for publication of how can i buy antabuse the final rule and the continuation of effectiveness of the proposed rule. Section 1871(a)(3)(A) of the Social Security Act (the Act) requires us to establish and publish a regular timeline for the publication of final regulations based on the previous publication of a proposed regulation. In accordance with section 1871(a)(3)(B) of the Act, the timeline may vary among different regulations based on differences in the complexity of the regulation, the number and scope of comments received, and other relevant factors, but may not be longer than 3 years except under exceptional circumstances.

In addition, in accordance with section 1871(a)(3)(B) of the Act, the Secretary may extend the initial targeted publication date of the final regulation if the Secretary, no later than the regulation's previously established proposed publication date, publishes a notice with the new target date, and such notice includes a brief explanation of the justification for how can i buy antabuse the variation. We announced in the Spring 2020 Unified Agenda (June 30, 2020, www.reginfo.gov) that we would issue the final rule in August 2020. However, we are still working through the Start Printed Page 52941complexity of the issues raised by comments received on the proposed rule and therefore we are not able to meet the announced publication target date.

This notice extends the timeline for publication of the final rule how can i buy antabuse until August 31, 2021. Start Signature Dated. August 24, 2020.

Wilma M how can i buy antabuse. Robinson, Deputy Executive Secretary to the Department, Department of Health and Human Services. End Signature End Supplemental Information [FR Doc.

2020-18867 Filed how can i buy antabuse 8-26-20. 8:45 am]BILLING CODE 4120-01-PThe Centers for Medicare &. Medicaid Services (CMS) today announced efforts underway to support Louisiana and Texas in response to Hurricane Laura.

On August 26, 2020, Department of Health and Human Services (HHS) how can i buy antabuse Secretary Alex Azar declared public health emergencies (PHEs) in these states, retroactive to August 22, 2020 for the state of Louisiana and to August 23, 2020 for the state of Texas. CMS is working to ensure hospitals and other facilities can continue operations and provide access to care despite the effects of Hurricane Laura. CMS provided numerous waivers to health care providers during the current alcoholism disease 2019 (alcoholism treatment) antabuse to meet the needs of beneficiaries and providers.

The waivers already in place will be available to health care providers to use during the duration of the alcoholism treatment how can i buy antabuse PHE determination timeframe and for the Hurricane Laura PHE. CMS may waive certain additional Medicare, Medicaid, and Children’s Health Insurance Program (CHIP) requirements, create special enrollment opportunities for individuals to access healthcare quickly, and take steps to ensure dialysis patients obtain critical life-saving services. “Our thoughts are with everyone who is in the path of this powerful and dangerous hurricane and CMS is doing everything within its authority to provide assistance and relief to all who are affected,” said CMS Administrator Seema Verma.

€œWe will partner and coordinate with state, federal, and local officials to make sure that in the midst of all of the uncertainty a natural disaster can bring, our beneficiaries will not have to worry about access to healthcare and other crucial life-saving how can i buy antabuse and sustaining services they may need.” Below are key administrative actions CMS will be taking in response to the PHEs declared in Louisiana and Texas. Waivers and Flexibilities for Hospitals and Other Healthcare Facilities. CMS has already waived many Medicare, Medicaid, and CHIP requirements for facilities.

The CMS how can i buy antabuse Dallas Survey &. Enforcement Division, under the Survey Operations Group, will grant other provider-specific requests for specific types of hospitals and other facilities in Louisiana and Texas. These waivers, once issued, will help provide continued access to care for beneficiaries.

For more how can i buy antabuse information on the waivers CMS has granted, visit. Www.cms.gov/emergency. Special Enrollment Opportunities for Hurricane Victims.

CMS will make available special enrollment periods for certain Medicare beneficiaries and certain individuals seeking health plans offered through the Federal Health Insurance Exchange. This gives people impacted by the hurricane the opportunity to how can i buy antabuse change their Medicare health and prescription drug plans and gain access to health coverage on the Exchange if eligible for the special enrollment period. For more information, please visit.

Disaster Preparedness Toolkit for State Medicaid Agencies. CMS developed an inventory of Medicaid and CHIP flexibilities and how can i buy antabuse authorities available to states in the event of a disaster. For more information and to access the toolkit, visit.

Https://www.medicaid.gov/state-resource-center/disaster-response-toolkit/index.html. Dialysis Care how can i buy antabuse. CMS is helping patients obtain access to critical life-saving services.

The Kidney Community Emergency Response (KCER) program has been activated and is working with the End Stage Renal Disease (ESRD) Network, Network 13 – Louisiana, and Network 14 - Texas, to assess the status of dialysis facilities in the potentially impacted areas related to generators, alternate water supplies, education and materials for patients and more. The KCER how can i buy antabuse is also assisting patients who evacuated ahead of the storm to receive dialysis services in the location to which they evacuated. Patients have been educated to have an emergency supply kit on hand including important personal, medical and insurance information.

Contact information for their facility, the ESRD Network hotline number, and contact information of those with whom they may stay or for out-of-state contacts in a waterproof bag. They have also been instructed to how can i buy antabuse have supplies on hand to follow a three-day emergency diet. The ESRD Network 8 – Mississippi hotline is 1-800-638-8299, Network 13 – Louisiana hotline is 800-472-7139, the ESRD Network 14 - Texas hotline is 877-886-4435, and the KCER hotline is 866-901-3773.

Additional information is available on the KCER website www.kcercoalition.com. During the 2017 and 2018 hurricane seasons, how can i buy antabuse CMS approved special purpose renal dialysis facilities in several states to furnish dialysis on a short-term basis at designated locations to serve ESRD patients under emergency circumstances in which there were limited dialysis resources or access-to-care problems due to the emergency circumstances. Medical equipment and supplies replacements.

Under the COVD-19 waivers, CMS suspended certain requirements necessary for Medicare beneficiaries who have lost or realized damage to their durable medical equipment, prosthetics, orthotics and supplies as a result of the PHE. This will help to make sure that beneficiaries can continue to access the how can i buy antabuse needed medical equipment and supplies they rely on each day. Medicare beneficiaries can contact 1-800-MEDICARE (1-800-633-4227) for assistance.

Ensuring Access to Care in Medicare Advantage and Part D. During a public health emergency, Medicare Advantage Organizations how can i buy antabuse and Part D Plan sponsors must take steps to maintain access to covered benefits for beneficiaries in affected areas. These steps include allowing Part A/B and supplemental Part C plan benefits to be furnished at specified non-contracted facilities and waiving, in full, requirements for gatekeeper referrals where applicable.

Emergency Preparedness Requirements. Providers and suppliers are expected to have emergency how can i buy antabuse preparedness programs based on an all-hazards approach. To assist in the understanding of the emergency preparedness requirements, CMS Central Office and the Regional Offices hosted two webinars in 2018 regarding Emergency Preparedness requirements and provider expectations.

One was an all provider training on June 19, 2018 with more than 3,000 provider participants and the other an all-surveyor training on August 8, 2018. Both presentations covered the emergency preparedness how can i buy antabuse final rule which included emergency power supply. 1135 waiver process.

Best practices and lessons learned from past disasters. And helpful resources and how can i buy antabuse more. Both webinars are available at https://qsep.cms.gov/welcome.aspx.

CMS also compiled a list of Frequently Asked Questions (FAQs) and useful national emergency preparedness resources to assist state Survey Agencies (SAs), their state, tribal, regional, local emergency management partners and health care providers to develop effective and robust emergency plans and tool kits to assure compliance with the emergency preparedness rules. The how can i buy antabuse tools can be located at. CMS Regional Offices have provided specific emergency preparedness information to Medicare providers and suppliers through meetings, dialogue and presentations.

The regional offices also provide regular technical assistance in emergency preparedness to state agencies and staff, who, since November 2017, have been regularly surveying providers and suppliers for compliance with emergency preparedness regulations. Additional information on the emergency how can i buy antabuse preparedness requirements can be found here. Https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_z_emergprep.pdf CMS will continue to work with all geographic areas impacted by Hurricane Laura.

We encourage beneficiaries and providers of healthcare services that have been impacted to seek help by visiting CMS’ emergency webpage (www.cms.gov/emergency). For more information about the HHS PHE, please visit.

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