Entrepreneurial treatment activism for undone science: mannitol and Parkinson's disease.

This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol-essentially, an orphan drug-as a Parkinson's disease treatment. As such, CliniCrowd addresses 'undone science', and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017-2020), we trace CliniCrowd's background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd's application of crowd-sourced citizen-science to address undone science around 'orphan drug' treatment for Parkinson's disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd's pragmatic, entrepreneurial-rather than the more common activist-citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.

Responsibility in Medical Sociology: A Second, Reflexive Look.

Personal responsibility has emerged as an important element in many countries' public health planning, and has attracted substantial debate in public health discourse. Contemporary medical sociology typically resists such "responsibilization" as victim-blaming, by privileged elites, that obscures important structural factors and inequities. This paper, based primarily on a broad review of how contemporary Anglophone medical sociology literatures treat responsibility and blame, points out advantages of taking responsibility seriously, particularly from the individual's perspective. These advantages include: empowerment; responsibility-as-coping-mechanism; moral dignity; and the pragmatic logic of doing for oneself, rather than passively awaiting societal reforms. We also offer possible reasons why sociologists and their subjects view these issues so differently, and suggest some areas for future research.

Learning social determinants of health through a home visiting course in the clinical years.

OBJECTIVE: The purpose of this study was to assess the impact of a new experience-based educational program aiming to teach social determinants of health (SDH) and health disparities, through a post-discharge home-visit conducted with patients recruited in hospital. METHODS: 105 clinical-year students visited 177 patients living in disadvantaged circumstances. Their home-visit reports were analyzed employing mixed methodology. Content analysis was conducted for classifying issues raised by students, and quantitative analysis to compare reports by level of elaboration, gender and class. RESULTS: Fifteen taxonomy items were identified. Social support and patients' medical conditions were most prevalent, followed by personal-related and community-related issues. Analysis demonstrated students' understanding of the relationship between SDH and patient health, and challenges patients face following discharge. Women and mixed couples provided more elaborate reports, which contained significantly greater critique of medical care. CONCLUSIONS: Meeting patients both in hospital and at home enhanced awareness of SDH. Students learned to view the patient comprehensively, and to understand the diverse factors affecting their health. Students, who had essentially sole responsibility for the home-visit, successfully integrated their skills to take action when needed. PRACTICE IMPLICATIONS: The ETGAR experience provided a means for effective learning about how social determinants impact on health.

Knowledge and risk perceptions of Israelis towards combustible cigarettes: the need for immediate remedial action.

BACKGROUND: Devastation from the tobacco epidemic continues, with strong government tobacco control policy absent in most countries. Knowledge of the full scope of tobacco harm in populations may form the basis for healthier behavior, de-normalization of smoking, and a consensus about necessary public policy. However, many populations may be poorly-informed about the risks, and this ignorance may undermine both effective policy-making and implementation of tobacco control policies. We present knowledge and risk perceptions about smoking tobacco smoke exposure in Israel. METHODS: A nationally-representative phone survey was conducted in Israel (n = 505; response rate = 61%). We assessed knowledge about active and passive smoking using four questions, three of which addressed knowledge about harm, and one of which addressed knowledge of tobacco-related harm relative to knowledge of harm due to traffic accidents. The three questions which addressed knowledge of harm were combined into a composite score. We also asked four risk perception questions concerning tobacco smoke exposure, which were measured on a 7-point Likert scale and then combined. Multivariable logistic regression and linear models were used to identify whether smoking status or socio-demographic variables were associated with knowledge of harm, comparative knowledge of harm, and risk perceptions. RESULTS: Just two in five respondents, and one in five respondents who were current smokers, accurately answered three simple questions about harms of smoking. Fewer than three in ten respondents, and fewer than one in five smokers, knew that smoking causes more damage than traffic accidents. Many (30.3%) were unaware that tobacco smoke exposure causes both lung cancer and heart disease, 27.7% did not know that smoking both shortens life and injures quality of life, and 31.1% did not know that smoking-attributable health problems will afflict all or most heavy smokers. Overall, risk perceptions regarding tobacco smoke exposure were high (mean = 24.5, SD:4.5, on a scale of 7-28, with 28 the indicating highest level). Smoking status was consistently associated with lower levels of knowledge, comparative knowledge, and risk perceptions, with current smokers having the lowest levels of knowledge and the lowest risk perceptions. CONCLUSIONS: Like many others, Israelis, and particularly Israeli smokers, do not fully grasp tobacco's true dangers. Effective communication of the full range of tobacco risks to the public, with a focus on communication with smokers, is an essential component of comprehensive tobacco control policy.

Do health policy advisors know what the public wants? An empirical comparison of how health policy advisors assess public preferences regarding smoke-free air, and what the public actually prefers.

BACKGROUND: Health policy-making, a complex, multi-factorial process, requires balancing conflicting values. A salient issue is public support for policies; however, one reason for limited impact of public opinion may be misperceptions of policy makers regarding public opinion. For example, empirical research is scarce on perceptions of policy makers regarding public opinion on smoke-free public spaces. METHODS: Public desire for smoke-free air was compared with health policy advisor (HPA) perception of these desires. Two representative studies were conducted: one with the public (N = 505), and the other with a representative sample of members of Israel's health-targeting initiative, Healthy Israel 2020 (N = 34), in December 2010. Corresponding questions regarding desire for smoke-free areas were asked. Possible smoke-free areas included: 100% smoke-free bars and pubs; entrances to health facilities; railway platforms; cars with children; college campuses; outdoor areas (e.g., pools and beaches); and common areas of multi-dweller apartment buildings. A 1-7 Likert scale was used for each measure, and responses were averaged into a single primary outcome, DESIRE. Our primary endpoint was the comparison between public preferences and HPA assessment of those preferences. In a secondary analysis, we compared personal preferences of the public with personal preferences of the HPAs for smoke-free air. RESULTS: HPAs underestimated public desire for smoke-free air (Public: Mean: 5.06, 95% CI:[4.94, 5.17]; HPA: Mean: 4.06, 95% CI:[3.61, 4.52]: p < .0001). Differences at the p = .05 level were found between HPA assessment and public preference for the following areas: 100% smoke-free bars and pubs; entrances to healthcare facilities; train platforms; cars carrying children; and common areas of multi-dweller apartment buildings. In our secondary comparison, HPAs more strongly preferred smoke-free areas than did the public (p < .0001). CONCLUSIONS: Health policy advisors underestimate public desire for smoke-free air. Better grasp of public opinion by policy makers may lead to stronger legislation. Monitoring policy-maker assessment of public opinion may shed light on incongruities between policy making and public opinion. Further, awareness of policy-maker misperceptions may encourage policy-makers to demand more accurate information before making policy.

Public support for smoke-free areas in Israel: a case for action.

OBJECTIVE: Secondhand smoke exposure (SHSe) harms adults and children. Though most governments are obliged by international health treaty to protect nonsmokers from SHSe, few adequately do so. Public opinion can provide a powerful mandate for smoke-free policies, but a representative public voice is often absent from the political discussion. For example, following Cabinet approval of a national tobacco control plan, Israel remains embroiled in stormy debate about smoke-free legislation. This debate has unfolded without benefit of current empirical evidence on nationwide public support. The present study reports and assesses public opinion regarding smoke-free places. METHODS: A nationally representative survey (n=505) was conducted in December, 2010. The response rate was 61%. RESULTS: Public opinion supports smoke-free air in many places. There was broad consensus among current, former, and never-smokers for smoke-free cars carrying children (94.4%), and smoke-free healthcare facility entrances (92.6%). A clear majority (67.0%) supported completely smoke-free bars and pubs. Nearly half (47.3%) supported eliminating school staff smoking rooms. CONCLUSIONS: These data strengthen the case for the recent government-approved tobacco control plan. Valid data regarding public opinion on tobacco control can facilitate passage and implementation of smoke-free legislation, thus speeding transition to smoke-free societies.

Ethnic differences in patterns of secondhand smoke exposure among adolescents in Israel.

INTRODUCTION: Adolescent secondhand smoke exposure (SHSe) is associated with smoking initiation and independently damages health. METHODS: We used data from the school-based 2003-2004 Israel National Health and Nutrition Youth survey (MABAT) to examine patterns and determinants of SHSe in a multiethnic sample of Israeli adolescents. School and child response rates were high (school: 91.8%, child: 87.9%), with 6,274 participants. We used generalized estimating equations to examine SHSe determinants. RESULTS: Most Israeli adolescents were exposed to SHS (total: 85.6%; home: 40%; school: 31.4%; entertainment: 73.3%; other: 16.3%). Exposure patterns differed between the Jewish and non-Jewish sectors. Jews were more frequently exposed at school and entertainment venues than were non-Jews but were less frequently exposed at home. Druze were the least exposed and non-Arab Christians the most exposed. Secular Jews were more exposed than were religious Jews; the opposite was true among Arabs. Children of less-educated fathers were exposed more than children of more-educated fathers. Adolescents who smoked were more exposed than were nonsmokers. CONCLUSIONS: The high levels of SHSe among Israeli adolescents were characterized by different patterns of exposure among different population groups. Interventions to reduce adolescent SHSe, with appropriate tailoring, are urgently needed. These findings provide support for sustainable implementation of the recent governmentally approved tobacco control plan, which includes extended legislation for, and increased enforcement of, laws about smoking bans in schools and entertainment venues. Researchers elsewhere should be aware that levels and patterns of SHSe may vary greatly by subpopulation.

Methodological issues in studying an insular, traditional population: a women's health survey among Israeli haredi (ultra-Orthodox) Jews.

This article describes obstacles encountered and strategies devised in planning and conducting a national telephone health survey (n = 459) of an insular, deeply traditional religious population, haredi (ultra-Orthodox Jewish) Israeli women. The paper discusses how special characteristics of this population influenced study design, sampling, data collection, and interpretation. Sampling employed polling data to identify haredi concentrations. Despite haredim's reputation for low survey participation, we achieved a 71-74% response rate (depending on the unknown eligibility of 24 phones never answered) in interviews conducted in 2003-2004. We describe our systematic attention to special aspects of haredi culture such as: modesty and speech codes; the need for rabbinic endorsement; and the importance of female, haredi interviewers. This research was initiated and managed by a community-based women's health non-governmental organization, in partnership with trained researchers. Our experiences can guide others surveying insular communities, such as traditional Muslim and Christian societies.

Internet social support groups as moral agents: the ethical dynamics of HIV+ status disclosure.

This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from 16 different groups, hosted on seven separate sites. The paper focuses on two main questions. First, apart from providing support and information, did the groups also debate moral dilemmas (and, despite groups' common perception as 'safe spaces' for non-judgmental exchanges, did these discussions include moral judgments and conflicts)? Secondly, did use of this new medium generate a new, alternative ethical discourse, or merely replicate existing discourses? The data demonstrate that online support groups did engage in debating, and trying verbally to enforce, certain views of the ethics of seropositivity disclosure. The most common view advocated full disclosure, though a range of positions existed. Unlike with most online support groups described elsewhere, these discussions often included harshly-expressed moral judgments. The groups did not generate a truly new, alternative discourse, but served as clearinghouses for and transmitters of existing 'off-line' discourses, both mainstream and alternative. Implications and limitations of the present study, and areas for further research, are discussed.

The rationale of interorganizational linkages to connect multiple sites of expertise, knowledge production, and knowledge transfer: an example from HIV/AIDS services for the inner city.

This paper presents the rationale for a long-running project in which various community-based and tertiary-based providers are being linked to each other in order to understand, reach, and engage high-risk, hard-to-reach inner-city residents for prevention, treatment, and management of HIV/AIDS. Not simply a program to link disparate actors, the work has developed into a more fundamental approach through which to build and maintain the infrastructure required to generate and sustain knowledge development and integration within and between systems. This work is grounded in the recognition that each type of provider, as well as patients and clients themselves, has a particular type of expertise. All forms of expertise are necessary to fight HIV/ AIDS. Different forms of expertise are necessary to diagnose, treat, prevent, and cure HIV/AIDS and its sequelae. This work suggests revisions in traditional approaches to expertise and to the content and geometry of dissemination networks, and ultimately challenges the very concepts of dissemination and the lay/scientific boundary.

Wiring the HIV/AIDS system: building interorganizational infrastructure to link people, sites, and networks.

This paper presents a case example of the new "geometry of care" (Rier and Indyk, this volume), by examining selected examples from five facets of a program developed by the lead author and in operation since 1989. This program is designed to understand, build, revise, and maintain the organizational infrastructure with which to link diverse players and sites, and combine these into a web for producing, assessing, and exchanging the information needed to combat HIV/AIDS. Each example demonstrates how opportunities were exploited for developing and linking resources within and between systems of care and prevention. The program began as an iterative and systems approach to improve access of high-risk, hard-to-reach inner city New York populations to HIV/AIDS services, treatment, and research. The approach is also currently being further elaborated and applied in Argentina and India (see Boylan et al., this volume), and is adaptable to other local and global public health challenges (see Indyk & Rier, this volume).

Requisites, benefits, and challenges of sustainable HIV/AIDS system-building: where theory meets practice.

This paper is the third and final of a series that has previously presented the rationale (Rier and Indyk, this volume) and major program elements (Indyk and Rier, this volume) of an approach to link community and tertiary sociomedical providers, clients/patients, sites, and systems into an integrated response to HIV/AIDS. The primary goal has been to improve sociomedical HIV/AIDS services for a hard-to-reach inner city population. The current paper first summarizes the main advantages (e.g., greater efficiency; more realistic, effective programs with greater credibility among the community; stimulation of knowledge production and dissemination amongst players rarely formally engaged in such activities; creation of a platform useful for other applications) of this work. It then examines some of the main organizational challenges in conducting the work (involving issues such as personnel, coordination, funding, turf conflicts, sustainability). From this discussion emerge organizational requisites to conducting this work (e.g., development of key boundary-spanning figures; attention to the specific interests of potential linkage partners; translation efforts to demonstrate the value of participation; a continuous quality improvement approach featuring wide distribution of feedback in user-friendly form; flexibility, tact and patience), so that others can adapt and apply the linkage approach to manage HIV/AIDS or other problems. Finally, we explain how theory and practice have driven one another in this work.

Flexible rigidity: supporting HIV treatment adherence in a rapidly-changing treatment environment.

This paper examines adherence to AIDS treatment, focusing on the challenges posed by rapidly changing treatment protocols. We examine the evolving views of treatment adherence, and endorse the "concordance" approach. This emphasizes collaboration and negotiation between provider and patient to formulate and maintain a manageable treatment regimen tailored to what the patient is ready, willing, and able to tolerate. Given the extreme rapidity with which treatment guidelines are revised or even reversed, the persistent uncertainty surrounding treatment risks and benefits, and the great variability in individuals' ability to tolerate a given regimen, we propose the term "flexible rigidity" to describe the type of adherence best suited to AIDS treatment. We present an organizational approach to supporting the type of provider-patient relationships needed to improve treatment adherence that features treatment- readiness assessment and custom-tailoring of treatment for those at all stages of the treatment-readiness continuum. We note that this model could be applied as well to prevention and management of other chronic diseases.

Publication visibility of sensitive public health data: when scientists bury their results.

What happens when the scientific tradition of openness clashes with potential societal risks? The work of American toxic-exposure epidemiologists can attract media coverage and lead the public to change health practices, initiate lawsuits, or take other steps a study's authors might consider unwarranted. This paper, reporting data from 61 semi-structured interviews with U.S. toxic-exposure epidemiologists, examines whether such possibilities shaped epidemiologists' selection of journals for potentially sensitive papers. Respondents manifested strong support for the norm of scientific openness, but a significant minority had or would/might, given the right circumstances, publish sensitive data in less visible journals, so as to prevent unwanted media or public attention. Often, even those advocating such limited "burial" upheld openness, claiming that less visible publication allowed them to avoid totally withholding the data from publication. However, 15% of the sample had or would, for the most sensitive types of data, withhold publication altogether. Rather than respondents explaining their actions in terms of an expected split between "pure science" and "social advocacy" models, even those publishing in the more visible journals often described their actions in terms of their "responsibility". Several practical limitations (particularly involving broader access to scientific literature via the Internet) of the strategy of burial are discussed, and some recommendations are offered for scientists, the media, and the public.

Audience, consequence, and journal selection in toxic-exposure epidemiology.

Even preliminary toxic-exposure epidemiology papers can spark "media scares" and questionable reactions amongst the public. Concerns for the social consequences of publication can lead epidemiologists--despite the advantages of visible publication--to choose a more obscure outlet for potentially sensitive studies. Interviews with 61 US toxic-exposure epidemiologists indicate that investigators generally sought visible journals to transmit their work to the widest relevant audience. Yet up to 36-46% of this sample sometimes have sought or would seek to keep their research from a public who, they feared, might misuse their results. Implications for the boundaries between science and society (including evidence of hidden scientific activism and "inert" public activism) are discussed, and six hypotheses for further research are proposed.