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Normative Science: The Goals and Methods of Evaluative Inquiry



  • Its objectives are to:Provide an integrated approach to the evaluation of normative work in the UN;

  • Provide hands-on methodological guidance, concise practical examples and tools for conducting evaluations of normative work; and

  • Highlight relevant lessons and best-fit practices of the evaluation of normative work inside and outside the UN system.

The handbook is intended primarily for evaluation professionals in the UN. It may also be useful to UN staff responsible for designing, managing and monitoring programmes and projects that integrate the norms, standards and codes of practice; and to the UN's partners in its normative work, particularly to governments and civil society organizations (CSOs). The handbook might also be applied when evaluating the internal performance of UN organizations with respect to standards for gender equality, human rights, ethics, conduct of humanitarian assistance and environmental sustainability.Available in English, French & Spanish




normative



Brain connectivity profiles seeding from deep brain stimulation (DBS) electrodes have emerged as informative tools to estimate outcome variability across DBS patients. Given the limitations of acquiring and processing patient-specific diffusion-weighted imaging data, a number of studies have employed normative atlases of the human connectome. To date, it remains unclear whether patient-specific connectivity information would strengthen the accuracy of such analyses. Here, we compared similarities and differences between patient-specific, disease-matched and normative structural connectivity data and their ability to predict clinical improvement. Data from 33 patients suffering from Parkinson's Disease who underwent surgery at three different centers were retrospectively collected. Stimulation-dependent connectivity profiles seeding from active contacts were estimated using three modalities, namely patient-specific diffusion-MRI data, age- and disease-matched or normative group connectome data (acquired in healthy young subjects). Based on these profiles, models of optimal connectivity were calculated and used to estimate clinical improvement in out of sample data. All three modalities resulted in highly similar optimal connectivity profiles that could largely reproduce findings from prior research based on this present novel multi-center cohort. In a data-driven approach that estimated optimal whole-brain connectivity profiles, out-of-sample predictions of clinical improvements were calculated. Using either patient-specific connectivity (R = 0.43 at p = 0.001), an age- and disease-matched group connectome (R = 0.25, p = 0.048) and a normative connectome based on healthy/young subjects (R = 0.31 at p = 0.028), significant predictions could be made. Our results of patient-specific connectivity and normative connectomes lead to similar main conclusions about which brain areas are associated with clinical improvement. Still, although results were not significantly different, they hint at the fact that patient-specific connectivity may bear the potential of explaining slightly more variance than group connectomes. Furthermore, use of normative connectomes involves datasets with high signal-to-noise acquired on specialized MRI hardware, while clinical datasets as the ones used here may not exactly match their quality. Our findings support the role of DBS electrode connectivity profiles as a promising method to investigate DBS effects and to potentially guide DBS programming.


Using an ethical lens, this review evaluates two methods of working within patient care and public health: the weight-normative approach (emphasis on weight and weight loss when defining health and well-being) and the weight-inclusive approach (emphasis on viewing health and well-being as multifaceted while directing efforts toward improving health access and reducing weight stigma). Data reveal that the weight-normative approach is not effective for most people because of high rates of weight regain and cycling from weight loss interventions, which are linked to adverse health and well-being. Its predominant focus on weight may also foster stigma in health care and society, and data show that weight stigma is also linked to adverse health and well-being. In contrast, data support a weight-inclusive approach, which is included in models such as Health at Every Size for improving physical (e.g., blood pressure), behavioral (e.g., binge eating), and psychological (e.g., depression) indices, as well as acceptability of public health messages. Therefore, the weight-inclusive approach upholds nonmaleficience and beneficience, whereas the weight-normative approach does not. We offer a theoretical framework that organizes the research included in this review and discuss how it can guide research efforts and help health professionals intervene with their patients and community.


The issue of whether to adopt a weight-normative or weight-inclusive approach to health is not simply a philosophical matter. Large-scale interventions designed to affect masses of people are being implemented on the basis of the weight-normative approach. A recent scopic review of papers on the unintended harm caused by public health interventions found that over a third of the papers covered the possible harmful effects of obesity-related public health efforts [40]. Obesity-related public heath efforts were identified as potentially harmful because they (a) have been based on limited or poor quality evidence, (b) focus on preventing one extreme outcome at the expense of another extreme outcome (boomerang effects), (c) lack community engagement, and (d) ignore the root cause of the problems. If pursuit of the most ethical and effective pathways to health and well-being is the priority, and health care professionals intend to uphold the principle of doing no harm, we argue an alternative to the weight-normative approach is required. In the following sections, we review the problems and limitations of the weight-normative approach to health and then highlight the weight-inclusive approach as an alternative model for health care and health improvement.


In addition to the data that speak against a weight-normative approach to health, there are also data in support of a weight-inclusive approach. Most of this research has focused on the HAES model and tested it against models which emphasize the weight-normative approach. Bacon and Aphramor reviewed the six existing randomized controlled trials of this research [36]. The inclusion criteria for the studies included publication in a peer-reviewed journal and an explicit focus on self-acceptance within the HAES intervention. The HAES model resulted in both statistically and clinically significant improvements for the participants on physiological measures (e.g., blood pressure), health practices (e.g., increased physical activity), and psychological measures (e.g., self-esteem and disordered eating). HAES achieved these health improvements more successfully than models that emphasize dieting. The participants within the HAES groups also demonstrated increased adherence (reduced dropout rates) and no adverse outcomes [36].


An approach to public health that incorporates a weight-inclusive approach may not only circumvent the adverse health and well-being consequences linked to the weight-normative approach but also may enhance population health. Longitudinal studies have repeatedly shown that, irrespective of actual weight, body satisfaction and freedom from weight-based teasing and stigma are linked to reduced risk for unhealthy dieting practices, sedentary behaviors, eating disturbances, and weight gain among young people [95, 153, 154]. Public health messages that are free of weight focus also appear to be more acceptable to the public and more likely to encourage healthy behaviors than messages emphasizing weight control or obesity prevention. For example, a large nationally representative U.S. survey revealed that participants responded most favorably to public health messages that promoted healthy behaviors without any reference to weight or obesity at all [155]. The survey further showed that messages perceived as weight stigmatizing were negatively received and rated less likely to foster healthy behavior change. The findings have since replicated in randomized controlled settings [156].


Several scholars have proposed actions that may be taken at the policy level to prevent and reduce harm associated with a weight-focused sociocultural climate [35, 157, 158]. However, a serious, inbuilt resistance to change appears to be present within health systems. For instance, OReilly and Sixsmith have argued that an overreliance on the dominant position of powerful institutions, such as the World Health Organization, has resulted in a dead-lock situation where public health authorities uncritically accept and maintain the weight-normative approach without scrutinizing its validity, effectiveness, or ethical implications [158]. Thus, the weight-normative approach becomes a self-perpetuated dogma. The indications of harm associated with this paradigm, however, demand that a closer look be taken and actions to reduce the focus on weight within public health be implemented. Certainly, during this implementation phase, data would be needed to evaluate the outcomes of moving away from a weight-normative toward a weight-inclusive approach.


OReilly and Sixsmith analyzed policy options that could be used to shift the weight-normative approach to a more weight-inclusive approach in public health [158]. They conducted interviews with key stakeholders who were asked to rank proposed policy changes in terms of estimated effectiveness in challenging the weight-normative approach, likelihood of promoting equity and reducing weight bias, political and public acceptability, and the practicalities of implementation. The policy change that received the most favorable rating was adopting language that did not mention weight in public health messages. This was seen as a very low cost action with a high level of public acceptability and political feasibility. The shift from a weight-normative to a weight-inclusive approach also emerged as a public preference in a recent Canadian report where members of the community were engaged in a discussion, in person and online, about feasible action to promote healthy weight in children. The most popular idea expressed online was to turn away from a weight-normative approach in health promoting efforts as many participants expressed concern with the language on weight and instead preferred a focus on healthy living [159]. As this is a policy change that can be implemented with relative ease, OReilly and Sixsmith highlighted it as a viable and recommended action for governments to reduce harm caused by weight stigma and weight preoccupation [158].


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