The devil is in the details: an analysis of patient rights in Swiss cancer registries

2021 ◽  
pp. medethics-2021-107564
Author(s):  
Andrea Martani ◽  
Frédéric Erard ◽  
Carlo Casonato ◽  
Bernice Simone Elger

Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent—in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements—from an ethical standpoint—of the recently reformed Swiss policy on cancer registration.

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e025200 ◽  
Author(s):  
Børge Sivertsen ◽  
Hege Råkil ◽  
Espen Munkvik ◽  
Kari Jussie Lønning

PurposeThe SHoT study was set up as a national student health survey for higher education in Norway, conducted at 4-year intervals. The dataset comprises a wide range of self-reported data covering information on mental and physical health, quality of life, health-related behaviours as well as more specific study-related information.ParticipantsThe SHoT studies conducted so far in 2010, 2014 and 2018, included 6053, 13 525 and 50 054 fulltime students (aged 18–35), respectively.Findings to dateThe main results from the first two waves have been published in three comprehensive Norwegian reports, with the most important finding being an increase in mental health problems (HSCL-score ≥2.0) among Norwegian college students from 2010 (16%) to 2014 (21%) to 2018 (29%).Future plansThe next SHoT study will be conducted in 2022, 2026 and so on. Starting from 2018-study, the survey data can also be linked to several national registers.


2013 ◽  
Vol 23 (3) ◽  
pp. 82-87 ◽  
Author(s):  
Eva van Leer

Mobile tools are increasingly available to help individuals monitor their progress toward health behavior goals. Commonly known commercial products for health and fitness self-monitoring include wearable devices such as the Fitbit© and Nike + Pedometer© that work independently or in conjunction with mobile platforms (e.g., smartphones, media players) as well as web-based interfaces. These tools track and graph exercise behavior, provide motivational messages, offer health-related information, and allow users to share their accomplishments via social media. Approximately 2 million software programs or “apps” have been designed for mobile platforms (Pure Oxygen Mobile, 2013), many of which are health-related. The development of mobile health devices and applications is advancing so quickly that the Food and Drug Administration issued a Guidance statement with the purpose of defining mobile medical applications and describing a tailored approach to their regulation.


2020 ◽  
Author(s):  
Victoria Kordovski ◽  
Savanna M. Tierney ◽  
Samina Rahman ◽  
Luis D. Medina ◽  
Michelle A. Babicz ◽  
...  

Objective: Searching the Internet for health-related information is a complex and dynamic goal-oriented process that places demands on executive functions, which are higher-order cognitive abilities that are known to deteriorate with older age. This study aimed to examine the effects of older age on electronic health (eHealth) search behavior, and to determine whether executive functions played a mediating role in that regard. Method: Fifty younger adults (≤ 35 years) and 41 older adults (≥50 years) completed naturalistic eHealth search tasks involving fact-finding (Fact Search) and symptom diagnosis (Symptom Search), a neurocognitive battery, and a series of questionnaires. Results: Multiple regression models with relevant covariates revealed that older adults were slower and less accurate than younger adults on the eHealth Fact Search task, but not on the eHealth Symptom Search task. Nevertheless, executive functions mediated the relationship between older age and eHealth Fact Search and Symptom Search accuracy. Conclusions: Older adults can experience difficulty searching the Internet for some health-related information, which is at least partly attributable to executive dysfunction. Future studies are needed to determine the benefits of training in the organizational and strategic aspects of Internet search for older adults and whether these findings are applicable to clinical populations with executive dysfunction.


Author(s):  
Adèle Perrin ◽  
Luiza Siqueira do Prado ◽  
Amélie Duché ◽  
Anne-Marie Schott ◽  
Alexandra L. Dima ◽  
...  

Person-centered care has led healthcare professionals (HCPs) to be more attentive to patients’ ability to understand and apply health-related information, especially those with chronic conditions. The concept of health literacy (HL) is essential in understanding patients’ needs in routine care, but its measurement is still controversial, and few tools are validated in French. We therefore considered the brief health literacy screen (BHLS) for assessing patient-reported HL in chronic care settings, and also developed an HCP-reported version of the BHLS with the aim of using it as a research instrument to assess HCPs’ evaluation of patients’ HL levels. We assessed the content validity of the French translation of both the patient-reported and HCP-reported BHLS in chronic care within hospital settings, through cognitive interviews with patients and HCPs. We performed qualitative analysis on interview data using the survey response Tourangeau model. Our results show that the BHLS is easy and quick to administer, but some terms need to be adapted to the French chronic care settings. Health-related information was observed to be mainly communicated orally, hence a useful direction for future literacy measures would be to also address verbal HL.


Author(s):  
Elke Knisel ◽  
Helge Rupprich ◽  
Annika Wunram ◽  
Markus Bremer ◽  
Christiane Desaive

Health literacy is an important outcome of the discussion of school-related health education and health promotion in the 21st century. Although the improvement of health literacy at an early age is increasingly recognized and few interventions show the development of children´s health literacy, still there is little research in this area. The purpose of the study was to examine the enhancement of health literacy among children in a physical activity-based program at elementary school. In total, 137 students aged 6–12 years participated in the program, which included health knowledge transfer in child-appropriate games and exercises. Participants´ health literacy was assessed using the HLS-Child-Q15-DE at the beginning and the end of the program. The instrument measures the access, understanding, appraisal and application of health-related information on a four-point Likert-type scale. As expected, the Wilcoxon signed-rank test revealed significant increases in self-reported health literacy over time. The results show that the degree of change in health literacy was not associated with gender or age. The results suggest that the physical activity-based program has the potential to improve elementary school children´s health literacy, even though in a single group pilot study.


1987 ◽  
Vol 60 (3_part_2) ◽  
pp. 1151-1156
Author(s):  
John M. Davis ◽  
R. Wade Wheeler ◽  
Eve Willy

From a large class who had been pretested on the I-E Locus of Control Scale and a self-esteem measure, 30 overweight and 20 normal-weight students were selected and measured to determine their percentage of overweight. They were then asked to complete questionnaires measuring knowledge of health-related information and of specific obesity-related information. Results confirmed (a) a negative correlation between self-esteem and percentage overweight and (b) less knowledge of broad, health-related information among obese students. No relation was found between percentage of overweight and I-E scale scores.


2019 ◽  
Vol 31 (2) ◽  
pp. 890-909 ◽  
Author(s):  
Yuxia Ouyang ◽  
Amit Sharma

PurposeThe purpose of this study was to investigate the preference of health-warning message labeling in an eating-away-from-home context. The authors assessed individuals’ preference valuation of such messaging from a dual – consumer and citizen – perspective and with associated expected risk reduction (RR) level.Design/methodology/approachIn an online stated choice experiment on Amazon’s Mechanical Turk (N = 658), participants were asked to provide willingness to pay (WTP) preferences for health-warning messages and based on the expected RR from health-warning messages. Two types of multiple price list questions were used for consumer and citizen contexts. Interval regression and descriptive analysis methods were applied to analyze the data.FindingsThe study found that individuals placed a higher value (higher WTP) on health-warning message labeling when acting as citizens rather than as consumers. An RR expectation of 50 per cent was most effective in increasing participants’ WTP. Individuals who ate out frequently were more concerned about healthier food messages, and the influence of gender and age on WTP was conditional on individuals’ roles as consumers versus citizens.Originality/valueThis study extends the theory of consumer-citizen duality to the context of health-related information labeling, thus opening the discussion to extending such labeling from traditionally risky behavior such as alcohol and tobacco to also including food choice behavior. The authors also highlight implications on policy and industry practices to promote healthy food choices through such messages.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Thierry Almont ◽  
Louis Bujan ◽  
Clarisse Joachim ◽  
Guillaume Joguet ◽  
Mylène Vestris ◽  
...  

Abstract Background In the French West-Indies, few studies have been performed on fertility and sexual problems in cancer survivors, which are frequent and recurring issues reported by surveys on unmet needs. Additionally, mutualizing human and material resources and promoting cooperation through a collaborative platform are the most appropriate response to complex health pathways in the Caribbean territories. Implementation of such a collaborative platform will help to launch a strategic Caribbean partnership to transfer theoretical and technical skills and care standards in oncofertility and oncosexuality. Methods We propose to set up a collaborative digital platform to strengthen, from the French expertise, Cuban health professionals’ knowledge, know-how, and skills in oncofertility and oncosexuality. The project will be coordinated by a coordinating, scientific, and supervisory committee, and the main activities will include: Theoretical training in e-learning adapted to low-speed Internet. Practical training in fertility preservation and sexual rehabilitation. Digital multidisciplinary consultation meetings for medical decisions to be taken for complex clinical cases. The platform will benefit from a recurrent evaluation, by the two cancer registries of Martinique and Cuba, with the following performance indicators: number of Cuban professionals trained, number of professionals sensitized, hourly volumes (or number of training courses provided), satisfaction of trained professionals, number of e-RCPs carried out online and number of missionaries supported. These indicators will be set up and analyzed by the registers. This project meets the Cuban and French health policies (cancer plans and national sexual health strategies) and will be implemented in liaison with the Health Agencies of both countries and the Embassy of France in Cuba. Discussion This project aims to provide support through bilateral exchanges to improve reproductive and sexual health in Cuba’s cancer patients. This collaboration will be based on a long-lasting French expertise and a solid Cuban health system. Consequently, this collaborative digital platform will contribute to data collection for cancer surveillance, and the two participating countries will ultimately be identified in the Caribbean as having centers of competence and excellence in oncofertility and oncosexuality with care standards.


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