Health Advocacy Organizations Research Articles

Multiple Sclerosis and COVID-19: Health and healthcare access, health information and consumer co-created strategies for future access at times of crisis

BackgroundPersons with multiple sclerosis (MS) need regular access to medical services for optimal health outcomes. During the COVID-19 crisis, evidence indicated some detrimental health changes in persons with MS. Maintaining access to healthcare providers and healthcare information may minimise detrimental health changes during times of crisis. In Australia, there is limited evidence of consultation with people who have chronic health conditions or disabilities regarding government decisions to restrict healthcare access and in the provision of health guidance during the COVID-19 crisis. Yet, there are good examples of government consultation with other minority populations in Australia, leading to beneficial outcomes. ObjectiveTo identify MS community members’ (persons with MS carers, advocates, healthcare providers) concerns about the health and healthcare access of persons with MS, during the second year of the COVID-19 pandemic and to collaborate with consumers in the MS community to co-create strategies to improve future access and health information provision at times of crisis. MethodWe undertook a consumer-co-created mixed-method study in the second year of the COVID-19 pandemic to identify healthcare access needs for MS. We presented results to our stakeholder group to identify support needs during crises. Persons with MS and care providers in the MS community completed an online survey and online interviews, and the stakeholder group participated in a stakeholder workshop. ResultsForty-four people participated in surveys, 33 completed interviews, and seven stakeholders participated in the stakeholder workshops. Three themes were identified from the surveys and interviews: health concerns, accessing healthcare services and communication sources. Healthcare providers (76.9 % of persons with MS and 77.8 % of care providers) and websites specific to the pandemic (76.9 % of persons with MS and 83.3 % of care providers) were identified by most survey respondents as preferred information sources during the COVID-19 crisis. Consultation with stakeholders resulted in the co-creation of strategies directed at communication, health, and lifestyle, as well as policies and protocols to address the needs of the MS community during crises. ConclusionWe listened to persons with MS and care providers to identify strategies to support health-communication, -access, and -lifestyle during crises. Consumer-created strategies are directed at national and local health advocacy organisations and governments. They are relevant for the coordinated healthcare planning of persons with chronic health conditions and disabilities during crises, such as those experienced by persons with MS.

Role model stories can increase health professionals’ interest and perceived responsibility to engage in climate and sustainability actions

BackgroundClimate change is one of the most significant threats to human and planetary health. As trusted sources, health professionals have a unique opportunity to help protect society from the impacts of climate change by educating key publics including policymakers about solutions to climate change, as well as reducing their sector's contribution to climate change by promoting sustainable practices in the workplace. Developing methods to activate health professionals as climate educators and advocates is an important step in activating this opportunity. Drawing on the practice of behavioral journalism, this study tests the effectiveness of role model stories at increasing attitudinal and behavioral engagement of health professionals with sustainability. MethodsParticipants in this study (n = 39) were employees of a network of U.S. hospitals and urgent care centers that were subscribed to a sustainability e-newsletter published by the healthcare system. Participants were randomly assigned to a control group that only received the regular newsletter, or a treatment group that received an additional series of emails featuring stories about sustainability role models in their healthcare system. ResultsWe found that receiving the role model stories increased participant's belief that health professionals have a responsibility to support sustainability efforts and their willingness to receive more information about joining a climate and health advocacy organization, although there were no between-group differences on other dependent variables. ConclusionThis study although limited by a small sample size provides evidence that role model stories can play a role in activating healthcare professionals to participate in sustainability initiatives and advocate for climate and health solutions.

Viewpoint diversity in public health.

Schools of public health are often situated within universities but not infrequently also function as public health advocacy organizations. Viewpoint diversity on many issues is often limited within schools of public health and does not reflect the diversity one finds in society more generally. It is argued that welcoming, and even seeking out, viewpoint diversity within public health would contribute to understanding and knowledge, to the training public health leaders and academics who can serve the whole of society, and to working together across ideological lines to better contribute to population health.

Advancing Health Equity in Neurologic Disorders and Stroke: Stakeholder Insights Into Health Disparities, Research Gaps, and Potential Interventions.

The purpose of this study was to analyze the National Institute of Neurological Disorders and Stroke (NINDS) Request for Information (RFI) input from the public-including health care providers, researchers, patients, patient advocates, caregivers, advocacy organizations, professional societies, and private and academic stakeholders with an interest in health disparities (HDs) in neurologic disease. RFI questions were structured to solicit input on what stakeholders believe are neurologic disease HD research priorities, drivers of health inequity, and potential interventions. Furthermore, these stakeholder insights were examined within the context of contemporary scientific literature and research frameworks on health equity and health disparities. The NINDS published a RFI from March 31 to July 15, 2020. The RFI analysis presented here is part of a larger strategic planning process aimed to guide future NINDS efforts in neurologic disorder health equity (HE) research and training. The public commented on facilitators of HDs, populations that experience HDs (HDPs), potential interventions, and research opportunities related to HDs in neurologic disease and/or care in the United States across the lifespan. Responses were analyzed using qualitative methodology. Frequently suggested interventions were thematically clustered using the interpretive phenomenological analysis methodology and are presented in this article to provide a stakeholder-identified roadmap for advancing HE. Respondents identified socioecological factors as driving HDs in 89% of determinants reported. Stakeholder-reported HD determinants and subsequent interventions could be classified into the following conceptual categories: HDP neurospecialty care access, innovative HDP engagement and research inclusion strategies, and development of a well-trained clinician-scientist HD workforce. Clustering of the feedback from patient and patient-adjacent respondents (i.e., caretakers and patient advocates) highlighted the prevalence of patient-provider interpersonal factors and limited resources driving access-to-care barriers among their sentiments. Respondent sentiments suggest prioritization of social determinants of health (SDOH) research, shifting away from the common target of biological and behavioral themes addressed in the existing body of HE research provided by the stakeholder. Overall, respondents suggest focusing research prioritization on access to care, engagement across the HE research and care landscape, and HE workforce development.

Synergistic Strategies to Accelerate the Development of Function-Promoting Therapies: Lessons From Operation Warp Speed and Oncology Drug Development.

Functional limitations and physical disabilities associated with aging and chronic disease are major concerns for human societies and expeditious development of function-promoting therapies is a public health priority. Expert panel discussion. The remarkable success of Operation Warp Speed for the rapid development of COVID-19 vaccines, COVID-19 therapeutics, and of oncology drug development programs over the past decade have taught us that complex public health problems such as the development of function-promoting therapies will require collaboration among many stakeholders, including academic investigators, the National Institutes of Health, professional societies, patients and patient advocacy organizations, the pharmaceutical and biotechnology industry, and the U.S. Food and Drug Administration. There was agreement that the success of well designed, adequately powered clinical trials will require careful definitions of indication/s, study population, and patient-important endpoints that can be reliably measured using validated instruments, commensurate resource allocation, and versatile organizational structures such as those used in Operation Warp Speed.

Tweets That Matter: Exploring the Solutions to Maternal Mortality in the United States Discussed by Advocacy Organizations on Twitter.

This study investigated maternal mortality solutions mentioned on Twitter by maternal health advocacy organizations in the United States. Using qualitative content analysis, we examined tweets from 20 advocacy organizations and found that the majority of the tweets focused on policy, healthcare, community, and individual solutions. The most tweeted policy solutions include tweets advocating signing birth equity, paid family leave, Medicaid expansion, and reproductive justice bills, whereas the most tweeted community solutions were funding community organizations, hiring community doulas, and building community health centers. The most tweeted individual solutions were storytelling, self-advocacy, and self-care. These findings provide insights into the perspectives and priorities of advocacy organizations working to address maternal mortality in the United States and can inform future efforts to combat this critical public health issue.

The diagnostic experience of women with fragile X-associated primary ovarian insufficiency (FXPOI).

The fragile X premutation occurs when there are 55-200 CGG repeats in the 5' UTR of the FMR1 gene. An estimated 1 in 148 women carry a premutation, with 20-30% of these individuals at risk for fragile X-associated primary ovarian insufficiency (FXPOI). Diagnostic experiences of FXPOI have not previously been included in the literature, limiting insight on experiences surrounding the diagnosis. This study identifies barriers and facilitators to receiving a FXPOI diagnosis and follow-up care, which can inform care and possibly improve quality of life. We conducted qualitative interviews with 24 women with FXPOI exploring how FMR1 screening, physician education, and supportive care impacted their experience. Three subgroups were compared: women diagnosed through family history who have biological children, women diagnosed through family history who do not have biological children, and women diagnosed through symptoms of POI. Themes from interviews included hopes for broader clinician awareness of FXPOI, clear guidelines for clinical treatment, and proper fertility workups to expand reproductive options prior to POI onset. Participants also spoke of difficulty finding centralized sources of care. Our results indicate a lack of optimal care of women with a premutation particularly with respect to FMR1 screening for molecular diagnosis, short- and long-term centralized treatment, and clinical and emotional support. The creation of a "FXPOI health navigator" could serve as a centralized resource for the premutation patient population, assisting in connection to optimal treatment and appropriate referrals, including genetic counseling, mental health resources, advocacy organizations, and better-informed physicians.

AI, Big Data, and surveillance zines as forms of community healthcare

ABSTRACT This article analyzes the zines, handbooks, and pamphlets on AI, Big Data, and surveillance published in the United States between 2009 and 2020 that aim to democratize knowledge on technologies. The main texts chosen for this article are A People’s Guide To AI: A beginner’s guide to understanding AI (2018), Digital Defense Playbook/Cuaderno De Juegos De Defensa Digital (2018), Oh! The Places Your Data Will Go (2019), The People’s Field Guide to Spotting Surveillance Infrastructure (2019) and the Coveillance Toolkits (2021), the Stop LAPD Spying Coalition’s zines (2020); and the five zines produced by the Detroit Digital Justice Coalition since 2009. These publications are part of a longer history of feminist activists printing zines, booklets, and pamphlets to make scientific knowledge more accessible. In particular, these publications build on the traditional use of zines and handbooks by feminist and health advocacy organizations such as the Boston Women’s Health Collective and ACT UP in the United States. In addition to following in their suit of explaining technical information by using clear language and providing definitions and resources, these publications on AI, Big Data, and Surveillance are themselves a form of health literacy.

Opportunities for Occupational Therapy Practitioners to Collaborate in Shaping Mental Health Policy and Practice to Support the 988 Initiative

In June of 2021, the American Occupational Therapy Association (AOTA) joined on as a signatory to the Unified Vision for Transforming Mental Health and Substance Use in America developed by Chief Executive Officers at 14 mental health advocacy, direct services and professional organizations. As one of the 44 allied signatory organizations, AOTA staff joined sessions to discuss the $8 billion in new federal stimulus funds for mental health care through 988. The bill provides funding for states to develop a three-digit telecommunication code to support those in a mental health or emotional crisis. Once learning details about the 988 Suicide and Crisis Lifeline and bill to provide funding, the AOTA Workforce Capacity Building team enlisted the expertise, talents, and resources of members to strategize on upcoming opportunities to help fill the workforce gap of mental health professionals and align views to position the future of the profession in mental and behavioral health. A micro volunteer group emerged consisting of those in academia, practice, and AOTA staff members. In support of the Unified Visionary Signatory, the AOTA encourages occupational therapy practitioners to use their skills, training, and expertise to address mental health in our communities: Every person. Every age. Every condition. This document highlights the challenges and opportunities for the profession of occupational therapy in support of the 988 Suicide and Crisis Lifeline bill and resources developed to educate the occupational therapy community. The objective was to assist in mobilizing those in the profession to help fill workforce gaps in mental health.

Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems

Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), presented by the Maternal and Child Health Bureau at the Health Resources and Services Administration, outlines principles and strategies that can be implemented at the federal and state levels and by health systems, health care providers, payors, and advocacy organizations to achieve a strong system of care for children and youth with special health care needs (CYSHCN). The vision for the financing of services outlined in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and their Families is one in which health care and other related services are accessible, affordable, comprehensive, continuous, and prioritize the wellbeing of CYSHCN and their families. There are several barriers caused or exacerbated by health care financing policies and structures that pose significant challenges for families of CYSHCN, including finding appropriate and knowledgeable provider care teams, ensuring adequate and continuous coverage for services, and ensuring benefit adequacy. Racial disparities and societal risks all exacerbate these challenges. This article outlines recommendations for improving financing for CYSHCN, including potential innovations to address barriers, such as state Medicaid expansion for CYSHCN, greater transparency in medical necessity processes and determinations, and adequate reimbursement and funding. Financing innovations must use both current and new measures to assess value and provide evidence for iterative improvements. These recommendations will require a coordinated approach among federal and state agencies, the public sector, the provider community, and the families of CYSHCN.

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.

Circular economy for plastics threatened by toxic additives

Recycled plastics in China, Indonesia, and Russia contain toxic chemicals that were added to original products and could pose health risks to consumers in their new iterations, advocates say in a report . The International Pollutants Elimination Network (IPEN), a coalition of more than 600 environmental and health advocacy organizations, found brominated flame retardants in recycled plastic products in all three countries. Every item tested contained brominated flame retardants that are banned under the global Stockholm Convention on Persistent Organic Pollutants, showing that these prohibited chemicals are ending up in new items through the recycling process. All three countries produce and receive electronic waste containing these flame retardants, the report says. The presence of the flame retardants and other toxic substances, including per- and polyfluoroalkyl substances (PFAS) and bisphenol A , render the possible circular economy for plastics, in which polymers would be recycled indefinitely, “poisonous,” the report says. “Until

The 30th anniversary of the code of ethics of the Royal Australian and New Zealand College of Psychiatrists-a worthy milestone.

To appraise the evolution of the RANZCP's Code of Ethics on the occasion of its 30th anniversary. We scrutinised its five editions, focussing on the revision procedure and changes made, and reviewed relevant literature. The procedure of revision has remained constant: incorporating feedback from college members, committees and faculties, and consulting professional medical bodies and mental health advocacy organisations. Seven major themes of change have emerged with respect to patient exploitation, recognition of family and carers, the special place of Indigenous Peoples, confidentiality, engaging patients in decision-making, multidisciplinary collaboration and the well-being of psychiatrists. The code has proved to be a dynamic instrument in keeping abreast of changes in psychiatry and society, and promises to maintain a prominent role in promoting high ethical standards in the profession.

DSM: A History of Psychiatry's Bible by Allan V. Horwitz

Reviewed by: DSM: A History of Psychiatry's Bible by Allan V. Horwitz Margaret Leggatt (bio) Allan V. Horwitz, DSM: A History of Psychiatry's Bible (Baltimore: Johns Hopkins University Press, 2021). ISBN: 9781421440705 (HC). 6 B&W photographs, x+ 215 pp. This book is a detailed, thoroughly researched, and comprehensive account of attempts to use the Diagnostic and Statistical Manual of Mental Disorders {DSM) to legitimise psychiatry as a profession with a solid scientific evidence base. As mental health issues are becoming increasingly acknowledged and accepted as distressing states of mind needing to be competently 'treated', understanding the history of what has gone before is important for future progress. Horwitz's book on the pros and cons (mainly cons!) of the DSM should, and hopefully will, help us towards finding better outcomes for those who are labelled 'mentally ill'. The DSM, owned by the American Psychiatric Association, was first published as a small booklet in 1952. By 2013, the manual had been revised to its fifth edition. The first two versions—DSM I and DSM II, published in 1952 and 1968 respectively—presented brief [End Page 144] descriptions of the major mental disorders. However the manual gained much wider recognition in 1980 after publication of its third version—DSM III—an imposing hardback volume of nearly 500 pages. It contained 'detailed and clear-cut symptom lists as well as decision rules that yielded standardized diagnoses', suggesting 'a confident, well-informed scientific grasp of mental illness, a physical embodiment of psychiatry in the scientific image' (p. 64). While the first two DSMs focussed on a small number of distinct entities, DSM III contained nearly three hundred separate diagnoses, many of which overlapped. The vastly greater role of observable symptoms—focussed on patients' current presentation of their problems—distinguished DSM III from the earlier manuals which gave far more importance to the way psychodynamics from past experiences produced symptoms. The changes in DSM III and, also, DSM IVwere not changes to the diagnoses. The major transformations came about as many outside advocates became involved—other mental health professionals, mental health advocacy organisations and feminist groups—making the DSM much more inclusive of cultural phenomena as aspects of mental illness. The extensive descriptive criteria in DSM III also allowed epidemiologists to estimate rates of particular mental disorders in untreated groups, and the enormous approximations that these studies provided became powerful marketing tools for psychiatry and other mental health professions. If clinicians were to live up to their medical credentials they should be able to prescribe medications for a specific disease regardless of the particular circumstances of the person who had it. Treat the disease and not the patient, and if your symptoms weren't recognised as a particular disease, then your insurance wouldn't pay for help. The application of DSM diagnoses to a broader society seemed to indicate that very many more people, not just psychiatric patients, suffered from a mental disorder at some point in life. The DSM III not only transformed the process of psychiatric diagnosis but also thrust the manual into cultural prominence. One suspects that this also became a field day for Big Pharma as more and more people resorted to medications to solve their behavioural, interpersonal, and social dilemmas. Each iteration of the DSM was eventually criticised on a range of different issues, meticulously explicated in this book. For example, after about two decades psychiatric researchers came to the conclusion that there were serious problems with DSM III. [End Page 145] They claimed that the basic characteristics of mental disorders were virtually the opposite of those portrayed in the manual. The categories were 'overlapping rather than discrete, dimensional more than categorical, generalised and not specific, and reflective of a small number of basic processes as opposed to hundreds of distinct conditions' (p. 84). Horwitz explains that even before these issues were taken into consideration, the DSM process would go through two further revisions. Interestingly, comments throughout this book suggest that clinicians were sceptical about the validity of many specific diagnoses. So even though the DSM was 'Psychiatry's bible', the diagnoses seemed to be used extensively as codes to obtain reimbursement from insurance companies for...

Stanford Initiative Engages Media About Mental Health, Suicide

Stanford Initiative Engages Media About Mental Health, Suicide

Peer doula support training for Black and Indigenous groups in Nova Scotia, Canada: A community-based qualitative study.

The objectives of this qualitative study were to explore participant experiences of doula training programs offered by a prisoner health advocacy organization and Indigenous and Black community groups. This investigation employed a qualitative design. Recruitment was conducted through email. Interviews were conducted in Winter 2020. Data were analyzed using thematic analysis. A total of 12 participants were recruited to participate in this study. Six participants identify as Black and six identify as Indigenous. All participants identify as women. Qualitative interviews were conducted using a semi-structured interview guide to elicit a breadth of information. Key themes included training experiences, training improvements and ''bridging the gap''. The training validated participants' experiences of birth and began to address the exclusion of Black and Indigenous people from birth work. However, participants expressed concerns about not being adequately positioned for sustained participation in birth work. Participants expressed receiving great value from the training programs. These trainings, which were fully subsidized, removed a financial barrier. However, these trainings do not address the exclusion of Black and Indigenous people from perinatal work or the lack or sustainable support systems for Black and Indigenous communities. This study makes several recommendations for future interventions.

Who Is Talking About Adverse Childhood Experiences? Evidence From Twitter to Inform Health Promotion.

Growing availability of research about addressing adverse childhood experiences (ACEs) has recently been embraced by the mainstream media and public. Social media, especially Twitter, provides a unique forum and platform for the public to access and share information about this topic. This study aims to better understand how the public is framing, sharing, and using research about ACEs on Twitter and to examine the information being commonly discussed about ACEs. We obtained tweets on the topics of ACEs, childhood resilience, and childhood trauma between January 1, 2018, and December 31, 2019. This timeframe was determined based on key related events in the mainstream media. Crimson Hexagon, a social media analytics system using Boolean logic, was used to identify salient topics, influencers, and conduct a content analysis. A total of 195,816 relevant tweets were obtained from our search. The weekly volume was approximately 1,864 tweets. Key topics included general use of the term ACEs (23%), trauma and ACEs (19%), long-term impact of ACEs (12%), preventing ACEs (11%), short-term effects of ACEs (8%), the 1997 ACE Study (5%), and students with ACEs (5%). The top two sentiments were fear and joy. Top conversation influencers included pediatricians, child health advocacy organizations, California's state government, the Centers for Disease Control and Prevention, and National Public Radio. This analysis provides insight to the ways the public is conversing about ACEs and related topics. Results indicated that conversations focus on increasing awareness of ACEs by content experts and public health organizations. This presents an opportunity to leverage social media tools to increase public engagement and awareness.

“Recovery warriors”: The National Eating Disorders Association’s online community and rhetorical vision

Mental health advocacy organizations play an important role in mitigating stigma and questioning the social norms that can create negative health outcomes. This essay explores how a U.S. advocacy organization attempted to facilitate shared meaning about a stigmatized health issue with its online community via rhetorical vision, or narrative that connects people in shared reality. Through the lens of symbolic convergence theory (SCT), a fantasy theme analysis of the National Eating Disorders Association’s (NEDA) social media messages and comments uncovered a recovery warrior metaphor that framed eating disorder recovery as a heroic journey. The analysis describes potential reasons why NEDA would attempt to foster a rhetorical vision informed by a warrior narrative, how it used warriors as a cue to facilitate vision, and the tensions within the community that expose the evolution and limitations of recovery warriors to constitute a rhetorical vision and community. Theoretical implications are offered at the intersections of public relations and SCT. These implications provide a roadmap for advocacy organizations attempting to build symbolic community and shared narratives online in the context of stigmatized health conditions while also interrogating organizational power to shape rhetorical visions.

Fighting the unbearable lightness of neglecting kidney health: the decade of the kidney.

A brief comprehensive overview is provided of the elements constituting the burden of kidney disease [chronic kidney disease (CKD) and acute kidney injury]. This publication can be used for advocacy, emphasizing the importance and urgency of reducing this heavy and rapidly growing burden. Kidney diseases contribute to significant physical limitations, loss of quality of life, emotional and cognitive disorders, social isolation and premature death. CKD affects close to 100 million Europeans, with 300 million being at risk, and is projected to become the fifth cause of worldwide death by 2040. Kidney disease also imposes financial burdens, given the costs of accessing healthcare and inability to work. The extrapolated annual cost of all CKD is at least as high as that for cancer or diabetes. In addition, dialysis treatment of kidney diseases imposes environmental burdens by necessitating high energy and water consumption and producing plastic waste. Acute kidney injury is associated with further increases in global morbidity, mortality and economic burden. Yet investment in research for treatment of kidney disease lags behind that of other diseases. This publication is a call for European investment in research for kidney health. The innovations generated should mirror the successful European Union actions against cancer over the last 30 years. It is also a plea to nephrology professionals, patients and their families, caregivers and kidney health advocacy organizations to draw, during the Decade of the Kidney (2020–30), the attention of authorities to realize changes in understanding, research and treatment of kidney disease.

Leading associations commit to agenda calling for transformation of care

As leading mental health advocacy organizations closed 2020 by uniting around an effort to transform the system of care (see MHW, Dec. 21, 2020), the question remains: Can 2021 mark the realization of the kind of collective vision that revolutionized the nation's response to cancer in the 1970s and HIV/AIDS in the 1980s?