Health Advocacy Groups Research Articles

Predictors of U.S. Adults' Opinion Toward an R-Rating Policy for Movies With Cigarette Smoking.

Recently, multiple health organizations and advocacy groups have pushed for giving an R-rating for movies depicting tobacco imagery. This study examined several predictors of U.S. adults' opinion toward an R-rating policy for movies depicting cigarette smoking. We used data from the Health Information National Trends Survey (2020 cycle), for a nationally representative sample of 3,865 US adults (aged ≥ 18). The outcome variable was opinion toward an R-rating policy (support, neutral, and oppose) for movies depicting cigarette smoking. A weighted adjusted multinomial logistic regression analysis with comparisons of support versus oppose, support versus neutral, and neutral versus oppose was performed. About 48.2% of respondents were supportive of, 31.1% were neutral toward, and 20.7% were opposed to an R-rating policy. Adults aged 50 to 64 years (adjusted odds ratio [aOR] = 2.28, p = .008) and ≥65 years (aOR = 4.54, p <.001) (vs. 18-34 years) were more likely to support the R-rating policy than oppose it. Non-Hispanic Black respondents (vs. non-Hispanic Whites) were 1.74 times more likely to support than oppose the policy (aOR = 1.74, p = .04), whereas adults with a household annual income of US$75,000 or more (vs. <$20,000) and those with moderate (vs. liberal) political viewpoints were more likely to be neutral than oppose the policy. Former and current e-cigarette users (vs. never users) were less likely to support than oppose the policy. Tailored messaging addressing the rationale behind R-rating policy should be directed towards communities based on age, race/ethnicity, household income, e-cigarette usage, and political ideologies.

Optimising Surveillance in Hepatocellular Carcinoma: Patient-Defined Obstacles and Solutions.

Six-monthly ultrasound surveillance for hepatocellular carcinoma (HCC) is recommended in patients with cirrhosis. Surveillance enhances early detection and improves survival. Yet, despite clear benefits, uptake remains low. We aim to identify and explore ways to overcome patient-related barriers to HCC surveillance with the aim of producing invitations for surveillance. Using the COM-B model of behaviour and a co-design process, we collaborated with patients, liver health charities and advocacy groups, to identify patient-related barriers to attending HCC surveillance. We performed qualitative thematic analysis of co-production workshops on HCC surveillance to develop information leaflets and surveillance invitations. Twenty-eight participants attended five workshops. Fear of a serious diagnosis and stigma from healthcare professionals were highlighted as main patient-related barriers to attending surveillance appointments. Co-design was used to develop informative, user-friendly, non-judgemental invitations and information regarding HCC surveillance relevant to populations with cirrhosis. We identified potential patient barriers to surveillance uptake and developed patient facing material that directly addressed these barriers to be trialled in the clinic. Targeting patient-specific barriers may increase uptake of surveillance and therefore enhance early diagnosis.

Integrating a Community Advisory Board Into a Pragmatic Trial of Mindfulness for Chronic Low Back Pain.

To improve the implementation of clinical trial interventions, there is a need to facilitate communication between key stakeholders and research teams. Community Advisory Boards (CAB) bring together a range of stakeholders not historically included in the research process to inform and work collaboratively with research teams. To describe our procedures and processes for (1) integration of a CAB into a pragmatic clinical trial of a telehealth-delivered group mindfulness program for persons with chronic low back pain (cLBP) within primary care, and (2) for the rapid uptake and implementation of CAB recommendations. The CAB we convened includes persons with cLBP who have undergone the mindfulness intervention, health care system leadership, advocacy groups, and mindfulness experts. The CAB members underwent a two hour initial training that introduced the research process and the CAB's role as research partners. The CAB met monthly for 1hour. We used the Lighting Report method to summarize meetings and share feedback with the research team. The recommendations of the CAB during the first year they met were divided into recruitment, informed consent, and survey recommendations. The study website also was overhauled based on recommendations, including a more engaging first page with rotating images of nature and testimonials. The language on the website was edited to be more concise and participant-friendly. The CAB recommended talking points to discuss with participants during screening or informed consent about the benefits of participating in research. We established a CAB that represented diverse perspectives, organizations, and experience with cLBP and mindfulness. The differing perspectives of the CAB resulted in recommendations that the research team itself would not have decided on their own. The Lightning Reports were also an effective way to efficiently communicate the CAB recommendations to the research team.

The Redox Stress Test: A novel technique reveals oxidative stress in Parkinson’s disease

A novel Redox Stress Test has been developed to identify symptoms of diseases associated with oxidative stress by observing symptom changes induced by short-term activation of the transcription factor Nrf2, to restore redox homeostasis. The Nrf2 pathway is triggered by a herbal preparation, Broccoli Seed Tea, developed to deliver a therapeutic dose of highly bioavailable sulforaphane, a potent activator of Nrf2. We discuss the rationale behind the tea and describe the methods used to optimise the bioavailability of sulforaphane to match the pharmacodynamics of Nrf2 activation. When consumed by people with Parkinson’s disease, the Redox Stress Test induced powerful and concurrent attenuation of a diverse group of Parkinson’s non-motor symptoms, including fatigue, constipation and urinary urgency. Motor symptoms were strictly unaffected. This observation indicates that oxidative stress may be a common factor contributing to non-motor symptoms involving sites in the CNS and peripheral organs. We tentatively interpret the results in terms of a hypothetical model for Parkinson’s Syndrome which we describe as a multisystem redox disorder with reservoirs of the disease in peripheral organs as well as in the brain. Eliminating the disease in peripheral organs is therefore a prerequisite to stopping disease progression in the brain. According to this model, the redox disorder in the brain provokes progressive neurological damage, which is not recognised as such in the early years. More specific neurological symptoms only come to light many years later, when damage to dopaminergic neurons creates a dopamine deficiency which eventually exceeds the threshold required for normal motor control, generating a new coherent group of neurological symptoms which define movement disorder. Given the apparent ease with which oxidative stress can be quenched in several locations simultaneously, we briefly discuss possible implications for public health, medical research, patients and patient advocacy groups. We note that the Redox Stress Test may have the potential to explore symptoms of other diseases where oxidative stress is believed to play a major role, although this remains subject to validation by further research.

On the Relationship Between Stakeholder Affiliation and Attitudes Toward Behavioral Health Reform in Kansas.

The lack of access to behavioral health care, trends in behavioral health issues, and the impact of social determinants of health underlie the need for behavioral health reform in Kansas. However, stakeholders may affect progress toward behavioral health reform. This study examined stakeholders' attitudes toward behavioral health reform. The authors analyzed data from a survey administered to elected officials, members of health advocacy groups, state employees, and payers in Kansas. Main outcome measures included attitudes toward the perceived benefit of certain behavioral health and social determinants of health policies and the perceived performance of the primary care and behavioral health care systems in Kansas. Payers perceived legislation to improve insurance coverage for behavioral health issues as less beneficial than state employees and members of health advocacy groups. Elected officials perceived legislation to address various social determinants of health as less beneficial than health advocates. Members of health advocacy groups rated the behavioral health care system more poorly than elected officials did. Preliminary findings reflected both the barriers and facilitators to behavioral health reform in Kansas. However, several limitations undermined the generalizability of these findings. Future studies should consider more representative sample sizes, additional variables in behavioral health and social determinants of health policies, and more comprehensive, validated measures.

Cultural discourses and HIV/AIDS activists’ meanings about PrEP

Since the approval of pre-exposure prophylaxis (PrEP) for HIV prevention in 2012, research has increasingly considered how communities of men who have sex with men make sense of this prevention technology, often highlighting individual-level attitudes about PrEP. Drawing on interviews with 16 HIV activists, this study aimed to determine how activists make sense of advances in HIV prevention technology. Participants’ sense-making about PrEP took the form of not merely the expression of individual attitudes, but rather reflections connected to their personal biographies and activist experience. Activists sustain seemingly contradictory discourses about PrEP, at once drawing on personal biographies and a discourse central to activist history to express scepticism about PrEP, but also other discourses to justify pharmaceutical intervention for prevention. Study findings provide evidence of the importance of attending to past and present cultural discourses when examining health advocacy groups’ constructions of advances in science.

Including General Audiences in a Virtual Scientific Dementia Conference: Will They Get Anything From It?

Study participants, patients, and care partners are key stakeholders in research and have asked for greater inclusion in the dissemination of scientific learning. However, the participation of general audiences in scientific conferences dedicated to Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) is not widely supported or studied. Our objectives were to evaluate the interest, level of engagement, and impact of including general audiences in a virtual dementia conference. A diverse group of lay participants, identified via community-based health advocacy groups and research centers, were invited to attend the 2021 Alzheimer's Association International Conference (AAIC), with optional small-group discussions. Participants received complimentary access to all scientific sessions and were supported via navigation tips, recommended sessions, and a glossary of frequently used terms and acronyms. Lay participants demonstrated a high level of engagement, even among those that were research-naïve, attending virtual sessions for an average of 11.7 hours across the five days and recommending a variety of sessions to each other on topics extending from prevention of dementia to new therapies and care. Most participants said they would attend the conference again and rated the quality of interaction as high, while requesting more opportunities to engage directly with researchers. General audiences, in particular research participants, are advocating for greater participation in scientific conferences. This program can serve as a model to accomplish inclusion; thereby acknowledging their invaluable contribution to science.

From growers to patients: Multi-stakeholder views on the use of, and access to medicinal cannabis in Australia.

Patient interest in the use of cannabis-based medicines (CBMs) has increased in Australia. While recent policy and legislative changes have enabled health practitioners to prescribe CBMs for their patients, many patients still struggle to access CBMs. This paper employed a thematic analysis to submissions made to a 2019 Australian government inquiry into current barriers of patient access to medical cannabis. We identified 121 submissions from patients or family members (n = 63), government bodies (n = 5), non-government organisations (i.e., professional health bodies, charities, consumer organisations or advocacy groups; n = 25), medical cannabis and pharmaceutical industry (n = 16), and individual health professionals, academics, or research centres (n = 12). Data were coded using NVivo 12 software and thematically analysed. The findings were presented narratively using a modified Levesque's patient-centred access to care framework which includes: i) appropriateness; ii) availability and geographic accessibility; iii) acceptability; and iv) affordability. Submissions from government agencies and professional health bodies consistently supported maintaining the current regulatory frameworks and access pathways, whereas an overwhelming majority of patients, advocacy groups and the medical cannabis industry described the current regulatory and access models as 'not fit for purpose'. These differing views seem to arise from divergent persepctives on (i) what and how much evidence is needed for policy and practice, and (ii) how patients should be given access to medical cannabis products amidst empirical uncertainty. Notwithstanding these differences, there were commonalities among some stakeholders regarding the various supply, regulatory, legislative, financial, and dispensing challenges that hindered timely access to CBMs. Progress in addressing the fundamental barriers that determine if and how a patient accesses and uses CBMs needs i) a 'system-level' reform that gives due consideration to the geographic disparity in access to prescribers and medical cannabis, and ii) reframing societal and health professional's views of CBMs by decoupling recreational vs medical cannabis.

Relationship between achieving Sustainable Development Goals and promoting optimal care and prevention of birth defects globally.

Birth defects affect eight million newborns annually worldwide. About 8% of global under-5 mortality is attributable to birth defects. The United Nations (UN) Sustainable Development Goals (SDGs) have set 17 global goals for human growth and development to be achieved by 2030 using multi-sectorial approaches. The third goal (SDG-3) focuses on ensuring healthy lives and promoting well-being; achieving SDG-3 improves birth defects care and prevention. However, we aimed to show how achieving other SDGs also influence optimal care and prevention of birth defects. SDGs focused on poverty reduction, access to nutritious food, universal health coverage, equitable education, gender equality, environment, inclusivity through infrastructure innovation, and strengthening social justice is crucial to addressing social determinants of health for individuals and families affected by birth defects. Understanding birth defects in the context of several relevant SDGs will allow practitioners, researchers, and policymakers to leverage the momentum generated by SDGs and make a case for commitment and allocation of funding and resources for advancing birth defects surveillance, care, and prevention. SDGs are built on principles of equity and social justice and we urge policy-makers to approach birth defects using various SDGs as a catalyst. The synergy between several SDGs helps to optimize birth defect outcomes and prevention. Our effort to present a more comprehensive look at various SDGs and their relationship with birth defects is parallel to several other health advocacy groups conducting a similar mapping exercise, thus bringing to the forefront millions of lives that are impacted by birth defects worldwide.

Mental health field responds to tragic Buffalo shootings

Mental health advocacy groups and organizations have released statements denouncing the horrific shooting of 10 people in a Buffalo supermarket last weekend, encouraging the public to get help, if needed, for mental health struggles from a trained mental health counselor. The groups also urged the need to commit to eliminating racism and discrimination.

US FDA takes step to limit lead in juice

As part of a broader effort to reduce toxic heavy metals in foods and beverages consumed regularly by young children, the US Food and Drug Administration is recommending limits of 10 ppb for lead in apple juice and 20 ppb for lead in other juices. If industry follows the FDA’s draft guidance, which was issued April 27, it could lead to a decrease of up to 46% in children’s lead exposure from apple juice, the agency estimates. The agency proposed a lower limit for apple juice than for other juices because apple juice is more commonly consumed, it says in a press release. Consumer and public health advocacy groups say the limits are too high for all the juices. “The FDA’s proposed limits fall far short of the protection children need from the dangers posed by lead in fruit juices,” Brian Ronholm, director of food policy at Consumer Reports ,

Influencing and implementing mandatory alcohol pregnancy warning labels in Australia and New Zealand.

Alcohol labelling laws and policy are contentious and highly politicized. Very few countries have been able to implement health warnings on alcohol labels due to complex legal and governance systems and coordinated industry lobbying. In 2020, Australia and New Zealand implemented a mandatory and evidence-based legal standard for pregnancy warning labels on alcohol products. This article discusses some of the challenges faced in achieving policy change and how these barriers were overcome by public health advocacy groups to build the evidence, counter industry conflicts of interest, consumer test health messages, mobilize community support and gather political support. Reflecting on the decades of ineffective regulation and politicization of this health issue, lessons for other countries include the importance of creating and maintaining relationships with decision makers and regularly updating them with evidence and recommendations, highlighting industry failures and tactics, building broad-based coalitions and sharing lived-experiences.

25 × 5 Symposium to Reduce Documentation Burden: Report-out and Call for Action.

The widespread adoption of electronic health records and a simultaneous increase in regulatory demands have led to an acceleration of documentation requirements among clinicians. The corresponding burden from documentation requirements is a central contributor to clinician burnout and can lead to an increased risk of suboptimal patient care. To address the problem of documentation burden, the 25 by 5: Symposium to Reduce Documentation Burden on United States Clinicians by 75% by 2025 (Symposium) was organized to provide a forum for experts to discuss the current state of documentation burden and to identify specific actions aimed at dramatically reducing documentation burden for clinicians. The Symposium consisted of six weekly sessions with 33 presentations. The first four sessions included panel presentations discussing the challenges related to documentation burden. The final two sessions consisted of breakout groups aimed at engaging attendees in establishing interventions for reducing clinical documentation burden. Steering Committee members analyzed notes from each breakout group to develop a list of action items. The Steering Committee synthesized and prioritized 82 action items into Calls to Action among three stakeholder groups: Providers and Health Systems, Vendors, and Policy and Advocacy Groups. Action items were then categorized into as short-, medium-, or long-term goals. Themes that emerged from the breakout groups' notes include the following: accountability, evidence is critical, education and training, innovation of technology, and other miscellaneous goals (e.g., vendors will improve shared knowledge databases). The Symposium successfully generated a list of interventions for short-, medium-, and long-term timeframes as a launching point to address documentation burden in explicit action-oriented ways. Addressing interventions to reduce undue documentation burden placed on clinicians will necessitate collaboration among all stakeholders.

Evidence-based Training to Improve Communication between Health Advocates and State Policymakers

ABSTRACT Persuading state policymakers to adopt effective child health policies requires effective communication from health advocates. This study examined the effectiveness of evidence-based communication training among child obesity advocates and their state legislators. A health advocacy group conducted training using evidence-based strategies and health-related policy updates in one Midwestern State Capitol building in January 2020. Twenty-three health professionals participated in the training prior to meetings with their legislators to discuss child obesity policies. An 18-item, pre- and post-questionnaire assessed training effects on knowledge, confidence, competence, importance of communicating, and future intentions to communicate with state policymakers. Satisfaction with the training was also assessed. Knowledge, confidence, importance, and future intentions to deliver child health messages to Missouri legislators all improved as a result of the training. Participants significantly increased their competence to speak with legislators on child health issues (Mann–Whitney U = 99.5; p = .039). Participants were very satisfied with the training and enjoyed receiving health-related policy updates and learning policymakers’ preferred message frames related to child health. Evidence-based training and in-person practice can significantly improve the competence of health advocates for communicating with their policymakers. This in-person training is one feasible strategy for developing impactful child health policies and informing health education efforts.

MH leaders: 988 crisis response represents an opportunity, responsibility

Momentum continues to build for 988, the new mental health crisis hotline slated to begin operation in July 2022 that would allow individuals or their families to call or text in the event of a crisis. In preparation, an unprecedented collaboration of 15 leading mental health organizations, advocacy groups and funders on Nov. 18 published a comprehensive approach to mental health care to help meet a growing demand for crisis care.

My body, my decision: the lived experience of young people with a variation in sex characteristics in New Zealand

Abstract Background Young people born with a variation in sex characteristics (VSC), or disorders of sex development (DSD) face numerous challenges in navigating issues relating to identity and to their lived and embodied experience. There is limited research amplifying the voices of young people with a VSC in the literature, especially in Aotearoa/New Zealand. There has been issues raised from a Humans Rights perspective which public health forums are yet to address. Methods This original qualitative study provides an up-to-date picture of the lived experiences of 10 young people with a VSC in Aotearoa/New Zealand using face to face interviews and thematic analysis. The research was conducted in collaboration with the advocacy group, Intersex Youth Aotearoa, and explored the level of support provided by health services, peers and advocacy groups in relation to the ways the participants viewed themselves and their bodies, and their health related decision-making. Results Our research reveals the pressure on young people with a VSC to conform to cultural and societal norms, specifically, heteronormative and traditional constructs of how male and female bodies should look prevalent within Aotearoa/NZ society. Such views, often held and perpetuated by health professionals and parents, contributed to the complexities surrounding identity, agency and acceptance of difference experienced by these young people. Young people wanted the right to bodily autonomy. Conclusions Implications of these findings are: better public education of VSC, development of resources for parents and young people and advocacy for psychological and peer support systems for young people.

Guidance on Navigating Insurance Plans for TMS-Eligible Patients

Guidance on Navigating Insurance Plans for TMS-Eligible Patients

COVID-19 vaccine hesitancy among health care workers amidst ongoing pandemic

Background: Beyond the current pandemic of COVID-19 disease, development and subsequently global access of vaccines against SARS-CoV-2 is vital. However, concern about vaccine hesitancy (delay in acceptance or refusal of vaccination despite availability of vaccination services) is a growing issue. With limited literature, this study aims to explore vaccine hesitancy for COVID-19 disease among health care workers.Methods: We conducted a cross-sectional anonymous online survey on heath care workers of medical college, Agra from 1 to 15 January 2021. Survey consisted of questions on demographic background, health status, and willingness for vaccination, reasons for unwillingness and items related to information about COVID-19 vaccination.Results: The study received responses from 400 health care workers. In present study, 233 (58.25%) responded that they are very likely to get COVID-19 vaccine (vaccine acceptance). 33.50% of HCWs were uncertain about being vaccinated (vaccine hesitant) and 8.25% HCWs reported that they are very unlikely to get vaccinated (vaccine resistant). Females were less willing for vaccination and significant gender wise difference was found. Majority of participants cited side effects (56%) and fast moving clinical trials (45%) as reasons for not going for vaccination. In context of COVID appropriate behavior, 93%, 77% and 70% responded that they will wear mask, practice social distancing and avoid social gatherings respectively even after vaccination.Conclusions: Our study finds that COVID-19 vaccine hesitancy and resistance in HCWs is 41.75%. Governments, public health officials and advocacy groups must be prepared to address hesitancy and build vaccine literacy so that the public will accept vaccine.

Development of AGA’s Policy Agenda During the COVID-19 Pandemic

Development of AGA’s Policy Agenda During the COVID-19 Pandemic

Visualizing Health Equity: Qualitative Perspectives on the Value and Limits of Equity Images

BackgroundHealth educators and advocacy groups often use side-by-side visual images to communicate about equity and to distinguish it from equality. Despite the near-ubiquity of these images, little is known about how they are understood by different audiences.AimsTo assess the effectiveness of an image commonly used to communicate about health equity.MethodIn 167 interviews with health stakeholders in Greater Cleveland, Ohio, in 2018 to 2019, a commonly used health equity image was shown to participants, who were asked to interpret its meaning. Interviewees included 21 health professionals, 21 clinicians, 22 metro-wide decision makers, 24 community leaders, and 79 community members.ResultsAbout two thirds of our socioeconomically, racial/ethnically, educationally, and professionally diverse sample said the equity image helped clarify the distinction between “equality” and “equity.” Yet less than one third offered an interpretation consistent with the image’s goals of foregrounding not only injustice but also a need for systemic change. Patterns of misinterpretation were especially common among two groups: ideological conservatives and those of lower socioeconomic status. Conservatives were most likely to object to the image’s message.ConclusionsEquity images are widely used by public health educators and advocates, yet they do not consistently communicate the message that achieving equity requires systemic change. In this moment of both public health crisis and urgent concern about systemic racism, new visual tools for communicating this crucial message are needed.