[ORGANIZATIONAL AND MANAGERIAL ASPECTS OF THE DEVELOPMENT OF PROJECTS IN THE FIELD OF MEDICAL CHARITY].

The article deals with organizational and managerial problems of projects in the field of medical charity. The development of the sector of non-profit organizations in the medical field today is due to the fact that the effective activity of the state is ensured by the stable development of the social sphere. The importance of charitable projects in the field of medicine is one of the important resources aimed at increasing the availability of medical care to needy categories of citizens around the world. Accessibility of medical care is achieved due to a complex of factors, among which a significant role is given to the capabilities of medical organizations themselves. Due to the fact that financial support has its limitations, charitable projects in the medical field become a resource that allows you to regulate the availability of medical care. The activities of charitable organizations in the medical field in modern conditions require the involvement of significant resources and the formation of an organizational and managerial mechanism for the development of projects in the field of assistance to those in need. The analysis of organizational and managerial aspects of the development of projects in the field of medical charity and the development of proposals for improving the activities of charitable organizations are the purpose of this work.

Diaper Need Met Among Low-Income US Children Younger Than 4 Years in 2016.

Objectives. To document the collective effort of diaper banks in the United States and to estimate the percentage of low-income children whose diaper need is met through these efforts.Methods. For each state, we compared the number of children younger than 4 years in families living at or below 200% of the federal poverty level with the number of children served by diaper banks in each state. We collected data reporting all 2016 activities from diaper banks (n = 262) via survey from January to March 2017.Results. In each state, the percentage of children experiencing diaper need that received assistance from a diaper bank ranged from 0% to 16% per month.Conclusions. The findings from this study highlight that a small proportion of low-income families accessed diapers through the existing community-based safety net provided by a national network of nonprofit diaper banks.Public Health Implications. Policies at the federal, state, and municipal level are needed to alleviate this consequence of poverty for children and their families.

Governing Commercial Access to Health Data for Public Benefit: Charity Law Solutions.

There is a growing body of evidence that supports the view that research participants and the public are concerned about commercial access to health data. Evidence also suggests that attitudes are ameliorated when charity organisations are involved and where research promises to deliver 'public benefit'. To a significant extent, therefore, mechanisms that ensure the public benefit are key to sustaining public and participant support for research access to health data. As a regime founded on the concept of public benefit, charity law provides regulatory and governance mechanisms through which the public benefit of a charity is protected and promoted. This article examines the merits of charity law mechanisms and analyses their significance for governance of commercial access to health data for public benefit, using UK Biobank Ltd, a charitable company limited by guarantee, as an example. The article critically analyses three charity law mechanisms that operate to ensure that an organization providing access to data meets its public benefit requirements: charitable purposes; members' and directors' powers and duties; and accountability via the oversight powers of the Charity Commission and charity proceedings in court. The article concludes that there is potential for the charity model to be the benchmark for governing commercial access to health data for public benefit research, but notes the limitations of the model and recommends the appointment of independent data governance committees to further bolster the charity law framework.

Celebrating partnership working between the third sector and the NHS.

Emeritus Professor Alan Glasper, University of Southampton, discusses the success of partnerships between the third sector and the NHS, which is crucial to improving care for people in society.

Publicly funded clinical research in Canada.

Clinical research is funded by industry, governments, charities, and hospitals. It is important to know the economic commitment of the various funding bodies, but until now there has been no national source available which provides these data. We surveyed the major funders to provide such a measure. There is evidence that government and charity funding of medical research is a trigger for private sector research investment; therefore, tracking all sources of funding for clinical research will provide policy-makers with an overall picture of health research funding. These data support policy decision-making related to clinical research in Canada.

The Movember Foundation's GAP3 cohort: a profile of the largest global prostate cancer active surveillance database to date.

OBJECTIVES: The Movember Foundation launched the Global Action Plan Prostate Cancer Active Surveillance (GAP3) initiative to create a global consensus on the selection and monitoring of men with low-risk prostate cancer (PCa) on active surveillance (AS). The aim of this study is to present data on inclusion and follow-up for AS in this unique global AS database. PATIENTS AND METHODS: Between 2014 and 2016, the database was created by combining patient data from 25 established AS cohorts worldwide (USA, Canada, Australasia, UK and Europe). Data on a total of 15 101 patients were included. Descriptive statistics were used to report patients' clinical and demographic characteristics at the time of PCa diagnosis, clinical follow-up, discontinuation of AS and subsequent treatment. Cumulative incidence curves were used to report discontinuation rates over time. RESULTS: At diagnosis, the median (interquartile range [IQR]) patient age was 65 (60-70) years and the median prostate-specific antigen level was 5.4 (4.0-7.3) ng/mL. Most patients had clinical stage T1 disease (71.8%), a biopsy Gleason score of 6 (88.8%) and one tumour-positive biopsy core (60.3%). Patients on AS had a median follow-up time of 2.2 (1.0-5.0) years. After 5, 10 and 15 years of follow-up, respectively, 58%, 39% and 23% of patients were still on AS. The current version of GAP3 has limited data on magnetic resonance imaging (MRI), quality of life and genomic testing. CONCLUSIONS: GAP3 is the largest worldwide collaboration integrating patient data from men with PCa on AS. The results will allow individual patients and clinicians to have greater confidence in the personalized decision to either delay or proceed with active treatment. Longer follow-up and the evaluation of MRI, new genomic markers and patient-related outcomes will result in even more valuable data and eventually in better patient outcomes.

Innovate Global Plastic and Reconstructive Surgery: Cleft Lip and Palate Charity Database.

BACKGROUND: There is an emerging interest in global surgery. The Lancet Commission on Global Surgery recognizes the important role that nongovernmental organizations (NGOs) play in the delivery of cleft lip and/or palate (CLP) surgical care. To better address the unmet burden of surgical disease, the commissioners propose the use of a centralized registry to maximize coordination of global surgical volunteerism efforts. This study aims to create a comprehensive database of CLP organizations. METHODS: A systematic search of the following resources was conducted: The Plastic Surgery Foundation, Smile Train, Wikipedia, Google, and lists of surgical NGOs. A secondary review of each organization's website was performed to verify inclusion criteria and to extract data. Organizations were classified as providing surgical or nonsurgical care. RESULTS: Thirty-one organizations providing CLP care were reviewed, with 30 that met inclusion criteria. Of the 20 surgical NGOs, 50% use a diagonal approach of international outreach, 40% a vertical one-way approach, and 10% a horizontal approach. All 10 of the nonsurgical NGOs provide care through a horizontal approach. Their offices are distributed across North America (43%), Asia (27%), Europe (23%), and Australia (7%). Forty-three percent of the organizations provide CLP surgeries or services in more than 1 country; 93% do so with a multidisciplinary team. A majority of the organizations established collaborations with host institutions (80%). CONCLUSION: To the authors' best knowledge, this database includes the largest collection of CLP organizations. This list will be made publicly available to inform surgical care planning, facilitate collaboration, and promote further research.

The SMA Trust: the role of a disease-focused research charity in developing treatments for SMA.

SMA is a rare hereditary neuromuscular disease that causes weakness and muscle wasting as a result of the loss of spinal motor neurons. In its most severe form, SMA is the commonest genetic cause of death in infants, and children with less severe forms of SMA face the prospect of lifelong disability from progressive muscle wasting, loss of mobility and limb weakness. The initial discovery of the defective gene has been followed by major advances in our understanding of the genetic, cellular and molecular basis of SMA, providing the foundation for a range of approaches to treatment, including gene therapy, antisense oligonucleotide treatments and more traditional drug-based approaches to slow or halt disease progression. The approval by the US Food and Drug Administration (FDA) of Spinraza (nusinersen), the first targeted treatment for spinal muscular atrophy (SMA), is a historic moment. Disease-focused research charities, such as The SMA Trust (UK), continue to have a crucial role in promoting the development of additional treatments for SMA, both by funding translational research and by promoting links between researchers, people living with SMA and other stakeholders, including pharmaceutical companies and healthcare providers.

Questioning Stakeholder Legitimacy: A Philanthropic Accountability Model.

Philanthropic organizations contribute to important work that solves complex problems to strengthen communities. Many of these organizations are moving toward engaging in public policy work, in addition to funding programs. This paper raises questions of legitimacy for foundations, as well as issues of transparency and accountability in a pluralistic democracy. Measures of civic health also inform how philanthropic organizations can be accountable to stakeholders. We propose a holistic model for philanthropic accountability that combines elements of transparency and performance accountability, as well as practices associated with the American pluralistic model for democratic accountability. We argue that philanthropic institutions should seek stakeholder and public input when shaping any public policy agenda. This paper suggests a new paradigm, called philanthropic accountability that can be used for legitimacy and democratic governance of private foundations engaged in policy work. The Philanthropic Accountability Model can be empirically tested and used as a governance tool.

A devolved model for public involvement in the field of mental health research: case study learning.

BACKGROUND: Patient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user-led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user-led organizations. OBJECTIVE: To understand the processes and impact of public involvement in a devolved model of working with user-led organizations. DESIGN: Multiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review. FINDINGS: Five key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research. CONCLUSIONS: A devolved model can support the involvement of user-led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place.

Humanitarian accountability, bureaucracy, and self-regulation: the view from the archive.

This paper contains a systematic exploration of local and national archives and sources relevant to charities and humanitarian fund appeals of the late Victorian and Edwardian eras (1870-1912) in Great Britain. It shows that the charitable world and humanitarian work share the same matrix and originate from the same roots, with considerable overlap between fundraising for domestic charity and overseas relief. These campaigns engaged in crucial self-regulatory processes very early on that involved concepts such as formal accountability and the close monitoring of delivery. Far from lagging behind in terms of formal practices of auditing and accounts, charities and humanitarian funds often were in the pioneering group as compared with mainstream businesses of the period. The charitable sector, notably through the Charity Organisation Society in cooperation with the press, developed and delivered accountability and monitoring, while the state and the Charity Commission played a negligible role in this process.

The alcohol industry, charities and policy influence in the UK.

BACKGROUND: Charities exist to pursue a public benefit, whereas corporations serve the interests of their shareholders. The alcohol industry uses corporate social responsibility activities to further its interests in influencing alcohol policy. Many charities also seek to influence alcohol and other policy. The aim of this study was to explore relationships between the alcohol industry and charities in the UK and whether these relationships may be used as a method of influencing alcohol policy. METHODS: The charity regulator websites for England and Wales and for Scotland were the main data sources used to identify charities involved in UK alcohol policy making processes and/or funded by the alcohol industry. RESULTS: Five charities were identified that both receive alcohol industry funding and are active in UK alcohol policy processes: Drinkaware; the Robertson Trust; British Institute of Innkeeping; Mentor UK and Addaction. The latter two are the sole remaining non-industry non-governmental members of the controversial responsibility deal alcohol network, from which all other public health interests have resigned. CONCLUSION: This study raises questions about the extent to which the alcohol industry is using UK charities as vehicles to further their own interests in UK alcohol policy. Mechanisms of industry influence in alcohol policy making globally is an important target for further investigations designed to assist the implementation of evidenced-based policies.

Nonprofit Charity Impacts Wounded Combat Veterans And Children Facing Adversity.

Mental and physical health challenges, especially for returning war veterans and their families, is a growing national concern. A grassroots program featuring equine therapy for these patients and their families shows promise in increasing self-esteem and self-confidence, reducing isolation and depression, and improving speaking and writing skills.

World elder abuse awareness day: the concept, the reality, and the promise.

This commentary traces the origins and evolution of the World Elder Abuse Awareness Day (WEAAD) initiative and provides recommendations for increasing WEAAD's impact as a catalyst for a coordinated movement within the United States.

Harnessing the power of the grassroots to conduct public health research in sub-Saharan Africa: a case study from western Kenya in the adaptation of community-based participatory research (CBPR) approaches.

BACKGROUND: Community-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children's Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example. METHODS: The CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR's Health and Well-being Project's corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination. RESULTS: To date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and community relevance and equity in the research agenda. CONCLUSION: CBPR methods have the ability to enable and strengthen epidemiological and public health research in sub-Saharan Africa within the social, political, economic and cultural contexts of the diverse communities on the continent. This project demonstrates that adaptation of these methods is crucial to the successful implementation of a community-based project involving a highly vulnerable population.