[Balancing drug regulation and health democracy: The role of patient and healthcare professional advisors at the ANSM]. / Concilier régulation du médicament et démocratie sanitaire : rôle des conseillers patient ou professionnel de santé à l'ANSM.

The French National Agency for Health Products (ANSM) is a regulatory and public health agency. Its regulatory, health policing and public health protection activities require a perfect fit with the field and the various people involved in the use of health products. Since 2019, the ANSM has adapted its organisation, procedures and processes to encourage and improve interaction with its stakeholders, as part of its policy of openness towards civil society. To accompany this ambitious change and to support its staff, the Agency has recruited advisors corresponding to the main users of health products: prescribers (doctor's hospital and outpatient), pharmacists and patients. Working as a group or individually, they provide a "lived" user perspective on health products at each stage of the evaluation process. They may be involved in the assessment of dossiers, signals or applications received by the Agency, in the internal validation of reports or in discussions with stakeholders. They are particularly involved when the analysis requires expertise that goes beyond the technical, scientific or regulatory aspects. They may also work with ANSM staff to explain certain processes and difficulties in the field. Advisors help to ensure that regulatory and/or scientific expertise is clear and consistent with user experience. In addition to their scientific and therapeutic aspects, medicines are also economic, social and political issues. Their regulation is therefore particularly affected by the need for health democracy. This requires the active participation of health professionals, patients and, more broadly, civil society in the decision-making process. Civil society is a space occupied by a wide range of actors who exert pressure from different ideological positions to influence the regulation of health products. In this context, taking into account a plurality of viewpoints in the regulation of health products is necessary and complex, but its operation can be facilitated by the collective efforts of the actors and the adaptation of organisations, such as the integration of advisors.

INTRODUCTION.

The National Public Health Law Conference: People. Policy. Progress., held October 2023, brought together more than 400 stakeholders in public health to explore how law and policy can be leveraged to advance health equity, improve data sharing for community health, protect access to reproductive health and facilitate system change.

Priorities and opportunities for advocacy in SCI: An international web-based review.

CONTEXT: For the growing number of people with spinal cord injuries worldwide, advocacy organizations are an invaluable resource of information and education during recovery and rehabilitation. OBJECTIVE: To examine the structure, information, and accessibility of websites from international organizations that serve and advocate for individuals with SCI. METHODS: We performed a content analysis of information available from SCI organizations returned from a Google search. We used search terms relevant to SCI and advocacy and applied them to top-level domains for the G20 countries. Organizations that provide services or advocate for people with SCI with English-language websites were included; organizations focused on research, fundraising, clinical care, interprofessional knowledge exchange, or other neurological conditions were excluded. Accessibility, in terms of ease of use to information about participation, was assessed using a 3-point scale. RESULTS: We identified SCI organizations from 27 different countries across six regions: Africa (N = 4), Asia (N = 5), Europe (N = 27), Middle East (N = 1), North America (N = 12), and Oceania (N = 11). Across these, six categories of resources and services are covered: (1) education, (2) physical health, (3) external, (4) peer support, (5) mental health, and (6) financial and legal. Eleven organizations indicate specific engagement with research or clinical trials. Four websites provided highly accessible information (rank = 3) about participation in research. CONCLUSION: The SCI organizations identified in this study offer resources that largely pertain to education and physical health services and strategies. Information about clinical trials and SCI research studies are easily accessible on the websites of the limited number of organizations offering avenues for participation.

A Media Advocacy Toolkit for the Allergist-Immunologist.

For clinicians involved in improving healthcare for patients with allergic and immunologic conditions, advocacy on a broader level through public outreach is key to advancing value-based care. In this article, we provide a toolkit of strategies and resources that can be used to raise public awareness of important issues through various mediums, including podcasts and social media, newspapers, testimonies, presentations, and interviews. A simple approach to effective media interactions is described using the acronym "RATIO", which stands for Research, Audience, Targeted topic, Interview rephrasing, and Optimism. The acronym also reminds the person who is presenting information that only a fraction of what is discussed will be recalled, and an even smaller proportion will be implemented. Key points should be made early. Examples of key talking points are provided for selected topics, including food allergy, anaphylaxis, asthma, rhinitis, and broader healthcare advocacy.

Self-performed Rh typing: a cross-sectional study.

OBJECTIVE: To evaluate whether patients are capable and willing to self-administer and interpret an EldonCard test to determine their Rh status. METHODS: This was a cross-sectional study in Honolulu, HI, USA of pregnancy-capable people aged 14-50 years who did not know their blood type and had never used an EldonCard. Participants independently completed EldonCard testing, determined their Rh type and answered a survey on feasibility and acceptability. Separately, a blinded clinician recorded their interpretation of the participant's EldonCard. When available, we obtained blood type from the electronic health record (EHR). We measured Rh type agreement between participant, clinician and EHR, as well as participant comfort and acceptability of testing. RESULTS: Of the 330 total participants, 288 (87.3%) completed testing. Patients and clinicians had 94.0% agreement in their interpretation of the EldonCard for Rh status. Patient interpretation had 83.5% agreement with EHR while clinician and EHR had 92.3% agreement. Sensitivity of EldonCard interpretation by patient and clinician was 100%. Specificity was 83.2% for patients and 92.2% for clinicians. Two patients (of 117) had Rh-negative blood type in the EHR. The vast majority of participants found the EldonCard testing easy (94.4%) and felt comfortable doing the testing (93.7%). Participants with lower education levels felt less confident (p=0.003) and less comfortable with testing (p=0.038); however, their ability to interpret results was similar to others (p=0.051). CONCLUSIONS: Patient-performed Rh typing via the EldonCard is an effective and acceptable option for patients, and could be used as a primary screening test for Rh status.

"What's in a name?": Using mpox as a case study to understand the importance of communication, advocacy, and information accuracy in disease nomenclature.

Historically, many diseases have been named after the species or location of discovery, the discovering scientists, or the most impacted population. However, species-specific disease names often misrepresent the true reservoir; location-based disease names are frequently targeted with xenophobia; some of the discovering scientists have darker histories; and impacted populations have been stigmatized for this association. Acknowledging these concerns, the World Health Organization now proposes naming diseases after their causative pathogen or symptomatology. Recently, this guidance has been retrospectively applied to a disease at the center of an outbreak rife with stigmatization and misinformation: mpox (f.k.a. 'monkeypox'). This disease, historically endemic to west and central Africa, has prompted racist remarks as it spread globally in 2022 in an epidemic ongoing today. Moreover, its elevated prevalence among men who have sex with men has yielded increased stigma against the LGBTQ+ community. To address these prejudicial associations, 'monkeypox' was renamed 'mpox' in November 2022. We used publicly available data from Google Search Trends to determine which countries were quicker to adopt this name change-and understand factors that limit or facilitate its use. Specifically, we built regression models to quantify the relationship between 'mpox' search intensity in a given country and the country's type of political regime, robustness of sociopolitical and health systems, level of pandemic preparedness, extent of gender and educational inequalities, and temporal evolution of mpox cases through December 2023. Our results suggest that, when compared to 'monkeypox' search intensity, 'mpox' search intensity was significantly higher in countries with any history of mpox outbreaks or higher levels of LGBTQ+ acceptance; meanwhile, 'mpox' search intensity was significantly lower in countries governed by leaders who had recently propagated infectious disease misinformation. Among infectious diseases with stigmatizing names, mpox is among the first to be revised retrospectively. While the adoption of a given disease name will be context-specific-depending in part on its origins and the affected subpopulations-our study provides generalizable insights, applicable to future changes in disease nomenclature.

Report of the 2023-2024 Strategic Engagement Standing Committee.

The American Association of Colleges of Pharmacy has long emphasized the value of strategic engagement, recognizing that it is critical to the success of pharmacy education, contributing to the expansion of pharmacy and public health practice, the fulfillment of institutional missions, and the meeting of programmatic needs. The 2023-2024 Strategic Engagement Committee was charged with operationalizing advocacy champions, creating an advocacy resource guide to support advocacy champions in their engagement with diverse public and private stakeholders, offering formal training to advocacy champions in the form of a new connect community and webinar series, and conducting focus groups at the 2024 Annual Meeting to determine strengths of the advocacy guide and opportunities to support advocacy champions further.

"Don't think of a soda": Contradictory public health messaging from a content analysis of Twitter posts about sugar-sweetened beverage taxes in California from 2015 to 2018.

To show how sugar-sweetened beverage (SSB) taxes were framed in posts on Twitter (now known as X) through text and images, we conducted a content analysis on a sample of Tweets from California users posted between January 1, 2015 and December 31, 2018 about SSB taxes in Berkeley, San Francisco, Oakland, and/or Albany, California. We evaluated posts for information sources, arguments for or against SSB tax policies, and images used. We found that posts presented a mix of messages through text and images. The majority of posts (64%) included arguments supporting SSB taxes, 28% presented a neutral position (e.g., factual information) or a mix of both pro-and anti-tax arguments, and 8% opposed. One-third of posts included an image, almost half of which appeared to be stock photos from SSB advertisements: many of these were shared by medical and public health users. Some tax supporters also reposted messages and images from opposition campaigns and added their own criticisms. By reposting opponents' anti-tax messages and images of SSBs, tax supporters may have inadvertently promoted SSBs, reinforced opposition to SSB taxes, and normalized SSBs. While advocates effectively shared pro-tax arguments, they should also ensure that accompanying images reflect the solutions they seek, not just the problem they are trying to combat.

The process of developing and implementing health and nursing policy: Implications of research and opportunities to influence.

AIM: To provide insight into the process of developing health and nursing policy and how that process can be influenced by both researchers and nursing leaders. BACKGROUND: Nurses care for people across the life course from birth to death, in our communities, hospitals, care homes and schools. They have unique insight into how people live their lives and how this affects their health. Despite being well placed to influence health policy, nurses often fail to capitalise on this. At the same time, academics often struggle to identify the policy implications of their research resulting in further missed opportunities to use policy influence. SOURCES OF EVIDENCE: Classical policy theory, which is predominantly drawn from economics and public administration together with a range of contemporary nursing and health policy studies, is used in this paper to discuss the policy process and opportunities to influence. DISCUSSION: Researchers need to focus on realistic policy suggestions that aim to raise awareness, highlight policy problems or set the agenda. In turn, nursing leaders, from National Nursing Associations, need to harness evidence to support their efforts to influence policy. In terms of influence, a range of approaches exist, and each lends itself to different parts of the policy cycle. CONCLUSION: The role nurses can play in health policy is not well developed in many countries. Nursing researchers and leaders are well placed to influence policy but must do so in a clear and pragmatic way recognising that policymakers make decisions despite being faced with conflicting evidence, competing demands and economic imperatives. IMPLICATIONS FOR NURSING PRACTICE: Recognising that nurses can offer much in terms of policy development, the paper argues that a pragmatic approach based on different forms of influence at different stages is likely to be most successful. IMPLICATIONS FOR NURSING AND HEALTH POLICY: The evidence reviewed in this paper suggests that nursing academics and leaders need to identify realistic policy interventions when examining their own empirical work or identifying ways to individually or collectively influence policymakers.

Water bead injuries by children presenting to emergency departments 2013-2023: An expanding issue.

A 2023 product recall has described the risk for morbidity and mortality for children ingesting water beads. We aimed to describe water bead exposure and management trends in the United States. We used the National Electronic Injury Surveillance System (NEISS) to identify water bead injuries from 2013 to 2023. Inclusion criteria were ages 0-17 years, diagnosis of ingested object/foreign body, and the narrative word(s) suggested water bead(s). NEISS supplied weights and variance variables to generate national estimates. There were 226 water bead injuries (66% ingestion). Children under age 2 years comprised 29% of injuries. Multiple water beads were involved in 56% of cases. There was a significant uptrend in water bead injury frequency after 2020. Sixteen (7%) cases required escalation of care. Water bead injuries are rising and appear to affect children of all ages. Children aged less than 5 years appear most vulnerable.

Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.

BACKGROUND: An estimated 3.5 million people in the UK live with a rare disease however due to the rarity of each individual condition this is not currently reflected in mainstream medical education. As a result, common features of living with a rare condition include diagnostic delay, poor coordination of health and social care and lack of access to specialist care and treatment. This is well documented in reports published by patient advocacy groups collating the patient experience and has been highlighted by the Department of Health and Social Care in its UK Rare Diseases Framework. One of the four priority areas outlined in this policy published in 2021 is 'increasing awareness amongst healthcare professionals'. Medics4RareDiseases (M4RD), a charity based in the UK, has proposed a disease-agnostic approach to educating doctors about rare disease, focusing on the common challenges experienced across this heterogeneous collection of conditions, rather than on the minutiae of each of the > 7000 rare conditions. A literature search using MEDLINE, PubMed Central and Bookshelf confirmed a lack of broad rare disease teaching in medical literature; none of the 10 final resources identified focused on the topic as a whole. RESULTS: To address this, M4RD created the course 'Rare Disease 101'. It is accessed online using a learning management system that is free, contains interactive lessons, hosts a discussion board and is easily updated. In the 29 months since going live, 942 individuals have registered with 204 having completed the course; early feedback from 33 respondents was unanimously positive (all participants rated at least good (76%: excellent)) demonstrating that both clinicians and patients can benefit from broad rare disease education. The course is freely available to all at https://learn.m4rd.org/ . CONCLUSIONS: Disease-agnostic training about rare disease as a large patient population, focusing on its unique profile of unmet needs, is required. Rare Disease 101 provides a pragmatic approach to an educational challenge that leads to poor patient outcomes. Early results suggest that the educational programme is well-received but further evaluation and assessment is needed.

Developing Disability Advocates Through Deliberate Inter-Professional Conversations Regarding Quality of Life After Stroke.

OBJECTIVE: Stroke can result in significant mental and physical impairment. Training healthcare professionals on effective strategies for mitigating stroke-related quality-of-life issues is crucial in facilitating comprehensive stroke management. This study aims to evaluate the impact of an interprofessional education (IPE) experience on students' attitudes regarding post-stroke disability. METHODS: In this pre-post interventional study, pharmacy and medical students received an electronic patient chart and a store-and-forward video depicting physical and cognitive impairment in a stroke patient. Students were instructed to discuss the acute management and post-discharge needs of the patient from an advocacy perspective. After the IPE experience, students completed the student perceptions of interprofessional clinical education-revised instrument (SPICE-R2) and an unvalidated disability attitudes survey. The surveys were analyzed using a paired t-test. Additionally, students reflected on the prompt, "What are some things you had NOT considered prior to this IPE?". RESULTS: Seven hundred and eight students completed the surveys. Post-IPE, there was a significant improvement in all domains of the SPICE-R2. On the disability survey, there was significant improvement on all statements, including rate your comfort with; 1.) discussing the expected disabilities associated with new-onset stroke and 2.) discussing strategies for improving the quality of life of a patient who has long term disabilities. On the self-reflections, 31.7% (N=211) had not considered the need for post-stroke care services prior to this IPE. CONCLUSION: This IPE experience was instrumental in improving student perspectives regarding post-stroke disability.

Prediction of the mechanism of suicide among Minnesota residents using data from the Minnesota violent death reporting system (MNVDRS).

BACKGROUND: Suicide remains a major public health problem, and firearms are used in approximately half of all such incidents. This study sought to predict the occurrence of suicide specifically by firearm, as opposed to any other means of suicide, in order to help inform possible life-saving interventions. METHODS: This study involved data from the Minnesota Violent Death Reporting System. Models evaluated whether data beyond basic demographics generated increased prediction accuracy. Models were built using random forests, logistic regression and data imputation. Models were evaluated for prediction accuracy using the area under the curve analysis and for proper calibration. RESULTS: Results showed that models constructed with social determinants and personal history data led to increased prediction accuracy in comparison to models constructed with basic demographic information only. The study identified an optimised 'top 20' variables model with a 73% chance of correctly discerning relative incident risk for a pair of individuals. Age, height/weight, employment industry/occupation, sex and education level were found to be most highly predictive of firearm suicide in the study's 'top 20' model. CONCLUSIONS: The study demonstrated that the use of a firearm in a death by suicide, as opposed to any other means of suicide, can be reasonably well predicted when an individual's social determinants and personal history are considered. These predictive models could help inform many prevention strategies, such as safe storage practices, background checks for firearm purchases or red flag laws.

Perspectives from the 2nd International Post-Tuberculosis Symposium: mobilising advocacy and research for improved outcomes.

In 2020, it was estimated that there were 155 million survivors of TB alive, all at risk of possible post TB disability. The 2nd International Post-Tuberculosis Symposium (Stellenbosch, South Africa) was held to increase global awareness and empower TB-affected communities to play an active role in driving the agenda. We aimed to update knowledge on post-TB life and illness, identify research priorities, build research collaborations and highlight the need to embed lung health outcomes in clinical TB trials and programmatic TB care services. The symposium was a multidisciplinary meeting that included clinicians, researchers, TB survivors, funders and policy makers. Ten academic working groups set their own goals and covered the following thematic areas: 1) patient engagement and perspectives; 2) epidemiology and modelling; 3) pathogenesis of post-TB sequelae; 4) post-TB lung disease; 5) cardiovascular and pulmonary vascular complications; 6) neuromuscular & skeletal complications; 7) paediatric complications; 8) economic-social and psychological (ESP) consequences; 9) prevention, treatment and management; 10) advocacy, policy and stakeholder engagement. The working groups provided important updates for their respective fields, highlighted research priorities, and made progress towards the standardisation and alignment of post-TB outcomes and definitions.

En 2020, il est estimé qu'il y a 155 millions de survivants de la TB dans le monde, tous exposés à un risque d'invalidité post-TB. Le deuxième Symposium International Post-Tuberculose (Stellenbosch, Afrique du Sud) a été organisé dans le but de sensibiliser davantage à l'échelle mondiale et de permettre aux communautés touchées par la TB de contribuer activement à la mise en œuvre de l'agenda. De plus, nous avons entrepris de mettre à jour les connaissances sur la vie et les maladies post-TB, de déterminer les domaines de recherche prioritaires, d'établir des partenariats de recherche et de souligner l'importance d'intégrer les résultats sur la santé pulmonaire dans les essais cliniques et les services de soins de la TB. Le symposium était une réunion de travail pluridisciplinaire rassemblant des praticiens, des chercheurs, des personnes ayant survécu à la TB, des donateurs, des décideurs politiques et d'autres acteurs clés. Dix groupes de travail académiques ont établi leurs propres objectifs et ont abordé les sujets thématiques suivants : 1) engagement et perspectives des patients ; 2) épidémiologie et modélisation ; 3) pathogénie des séquelles post-TB ; 4) maladie pulmonaire post-TB (PTLD, pour l'anglais «post-TB lung disease ¼) ; 5) complications cardiovasculaires et vasculaires pulmonaires ; 6) complications neuromusculaires et squelettiques ; 7) complications pédiatriques ; 8) conséquences économiques, sociales et psychologiques (ESP, pour l'anglais «economic-social and psychological¼) ; 9) prévention, traitement et gestion ; 10) plaidoyer, politique et engagement des parties prenantes. Les groupes de travail académiques ont apporté des mises à jour significatives dans leurs domaines respectifs, ont mis en évidence les priorités de recherche et ont avancé vers la normalisation et l'harmonisation des résultats et des définitions de la post-TB.

Predictors of burnout, secondary traumatic stress, and compassion satisfaction among practitioners in Norwegian child advocacy centers.

BACKGROUND: Practitioners at Child Advocacy Centers (CACs) are frequently exposed to indirect trauma through their job, yet there is a lack of knowledge on how this affects them emotionally. OBJECTIVE: This study aimed to investigate the levels of burnout, secondary traumatic stress (STS), and compassion satisfaction among practitioners at Norwegian CACs, and possible individual or work-related predictors. PARTICIPANTS AND SETTING: An electronic cross-sectional survey was sent to practitioners at Norwegian CACs. A total of 77 practitioners completed the survey (response rate 86.5 %). METHODS: Variables were measured with the Professional Quality of Life Scale, the Multifactor Leadership Questionnaire, and questions on personal traumatic experiences, support, and supervision. Bivariate and multivariate mixed effects modeling analyses and logistic regression analyses were employed. RESULTS: The results showed relatively low levels of burnout and STS, and high levels of compassion satisfaction, compared to other studies of child protective and child welfare professionals. Work-related factors, but not individual factors, were found to predict all three outcome variables: Burnout was predicted by transformational leadership (p = .002) and laissez-faire leadership (p = .012), secondary traumatic stress by case supervision (p = .001), and compassion satisfaction by transformational leadership (p < .000), laissez-faire leadership (p = .028), and personal supervision (p = .023). CONCLUSIONS: The results indicate that transformational leadership and supervision may protect against burnout and STS and promote compassion satisfaction in practitioners working at CACs. The type of supervision may be relevant, as case-focused supervision predicted STS, while personal supervision predicted compassion satisfaction.