New public health approaches to palliative care, a brave new horizon or an impractical ideal? An Integrative literature review with thematic synthesis.

Access to palliative care for marginalized communities is frequently problematized as a major challenge facing palliative care services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in palliative care. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. We argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, we present previously undiscussed areas of contention drawing from a pan-disciplinary field of theoretical and empirical evidence. We conclude that new public health approaches lack a consistent and unified theoretical approach. From philosophical, ontological and existential ideas relating to how different stakeholders conceptualize death, to the processes by which communities are motivated and their constituent members empowered through responsibilized notions of duty and reciprocity, there is little acknowledgement of the complex tensions at hand. Increasing academic and political initiative alone is not enough to progress this movement in a manner that achieves its full potential. Instead, we must pay greater attention to the tensions described. This article aims to work with such tensions to better define the landscape of collective moral responsibility in end-of-life care. We believe that this is crucial if palliative care is to avoid becoming a technical speciality with community and communitization reduced to a mere technical solution to more profound questions.

Ayurveda and medicalisation today: The loss of important knowledge and practice in health?

Ayurveda translates as 'life science'. Its knowledge is not limited to medicine, cure or therapy and is for laypersons, households, communities, as well as for physicians. Throughout its evolutionary history, Ayurveda and Local Health Traditions have reciprocally influenced each other. In modern times, the influence of biomedicine on Ayurveda is leading to its medicalisation. Over the past century, the introduction and perspective of biomedicine into India has made the human being an object for positive knowledge, a being who can be understood with scientific reason and can be governed and controlled through medical knowledge. This paper explores how this shift towards medicalisation is affecting the knowledge, teaching, and practice of Ayurveda. It examines the impact and contribution of processes like standardisation, professionalisation, bio-medicalisation and pharmaceuticalisation on Ayurveda education, knowledge, practice and policies. To maintain health and wellbeing Ayurveda's ancient knowledge and practice needs to be applied at individual, community and health care provider levels and not be limited to the medical system. The current over medicalisation of society is a potential threat to human health and well-being. Ayurveda and LHT knowledge can provide essential teachings and practices to counter-balance this current trend through encouraging a population's self-reliance in its health.

A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru, India.

BACKGROUND: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives. METHODS: In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed. RESULTS: Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential. CONCLUSION: Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples' support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.

Understanding the complex relationships among actors involved in the implementation of public-private mix (PPM) for TB control in India, using social theory.

BACKGROUND: Public Private Partnerships (PPP) are increasingly utilized as a public health strategy for strengthening health systems and have become a core component for the delivery of TB control services in India, as promoted through national policy. However, partnerships are complex systems that rely on relationships between a myriad of different actors with divergent agendas and backgrounds. Relationship is a crucial element of governance, and relationship building an important aspect of partnerships. To understand PPPs a multi-disciplinary perspective that draws on insights from social theory is needed. This paper demonstrates how social theory can aid the understanding of the complex relationships of actors involved in implementation of Public-Private Mix (PPM)-TB policy in India. METHODS: Ethnographic research was conducted within a district in a Southern state of India over a 14 month period, combining participant observations, informal interactions and in-depth interviews with a wide range of respondents across public, private and non-government organisation (NGO) sectors. RESULTS: Drawing on the theoretical insights from Bourdieu's "theory of practice" this study explores the relationships between the different actors. The study found that programme managers, frontline TB workers, NGOs, and private practitioners all had a crucial role to play in TB partnerships. They were widely regarded as valued contributors with distinct social skills and capabilities within their organizations and professions. However, their potential contributions towards programme implementation tended to be unrecognized both at the top and bottom of the policy implementation chain. These actors constantly struggled for recognition and used different mechanisms to position themselves alongside other actors within the programme that further complicated the relationships between different actors. CONCLUSION: This paper demonstrates that applying social theory can enable a better understanding of the complex relationship across public, private and NGO sectors. A closer understanding of these processes is a prerequisite for bridging the gap between field-level practices and central policy intentions, facilitating a move towards more effective partnership strategies for strengthening local health systems. The study contributes to our understanding of implementation of PPP for TB control and builds knowledge to help policy makers and programme managers strengthen and effectively implement strategies to enable stronger governance of these partnerships.

Seeking a better landscape for therapy development in neuromuscular disorders.

Although the neuromuscular field has seen accelerated approval of a drug for Duchenne muscular dystrophy (DMD) and full approval of one for spinal muscular atrophy, these experiences have shown that objective data and an adequate level of effect are essential for drug approval and reimbursement. The appropriateness and validity of biomarkers and clinically meaningful endpoints and an understanding of disease progression rates all played essential roles in the levels of evidence for these drugs. Such tools are best developed through integration of clinical data. The siloing of clinical data for rare neuromuscular diseases represents a considerable barrier to achieving better care and novel therapies for patients living with neuromuscular diseases. We discuss a data-sharing model implemented for DMD and urge cultural changes in the ways natural history and clinical trial data are collected and shared across all neuromuscular diseases in order to benefit the primary stakeholder, the patient. Muscle Nerve 57: 16-19, 2018.

"Getting the water-carrier to light the lamps": Discrepant role perceptions of traditional, complementary, and alternative medical practitioners in government health facilities in India.

The government of India has, over the past decade, implemented the "integration" of traditional, complementary and alternative medical (TCAM) practitioners, specifically practitioners of Ayurveda, Yoga and Naturopathy, Unani, Siddha, Sowa-rigpa, and Homoeopathy (collectively known by the acronym AYUSH), in government health services. A range of operational and ethical challenges has manifested during this process of large health system reform. We explored the practices and perceptions of health system actors, in relation to AYUSH providers' roles in government health services in three Indian states - Kerala, Meghalaya, and Delhi. Research methods included 196 in-depth interviews with a range of health policy and system actors and beneficiaries, between February and October 2012, and review of national, state, and district-level policy documents relating to AYUSH integration. The thematic 'framework' approach was applied to analyze data from the interviews, and systematic content analysis performed on policy documents. We found that the roles of AYUSH providers are frequently ambiguously stated and variably interpreted, in relation to various aspects of their practice, such as outpatient care, prescribing rights, emergency duties, obstetric services, night duties, and referrals across systems of medicine. Work sharing is variously interpreted by different health system actors as complementing allopathic practice with AYUSH practice, or allopathic practice, by AYUSH providers to supplement the work of allopathic practitioners. Interactions among AYUSH practitioners and their health system colleagues frequently take place in a context of partial information, preconceived notions, power imbalances, and mistrust. In some notable instances, collegial relationships and apt divisions of responsibilities are observed. Widespread normative ambivalence around the roles of AYUSH providers, complicated by the logistical constraints prevalent in poorly resourced systems, has the potential to undermine the therapeutic practices and motivation of AYUSH providers, as well as the overall efficiency and performance of integrated health services.

Medical pluralism among indigenous peoples in northeast India - implications for health policy.

OBJECTIVES: The government of India is promoting and increasing investment in the traditional medicine systems of Ayurveda, Yoga, Unani, Siddha and Homeopathy (AYUSH) in the northeast region of India. But there are few empirical data that support this policy decision. This study estimates the awareness and use of the different medical systems in rural Meghalaya, a state in north-east India with a predominantly ethnic tribal population. METHOD: We conducted a cross-sectional multistage random sample household survey across all districts of Meghalaya. To enable appropriate estimates for the whole of rural Meghalaya, the data were weighted to allow for the probability of selection of households at each stage of the sampling process. RESULTS: Both local tribal medicine and biomedicine were widely accepted and used, but the majority (68.7%, 95% CI: 51.9-81.7) had not heard of AYUSH and even fewer had used it. Tribal medicine was used (79.1%, 95% CI 66.3-88.0), thought to be effective (87.5%, 95% CI: 74.2-94.1) and given in a variety of disorders, including both minor and major diseases. In the 3 months prior to the survey, 46.2% (95% CI: 30.5-62.8) had used tribal medicine. Only 10.5% (95% CI: 6.1-17.6) reported ever using any of the AYUSH systems. CONCLUSION: Our comparative estimates of the awareness and use of tribal medicine, different systems of AYUSH and of biomedicine among indigenous populations of India question the basis on which AYUSH is promoted in the northeast region of India and in the state of Meghalaya in particular.

Perspectives on best practices for gene therapy programs.

With recent successes in gene therapy trials for hemophilia and retinal diseases, the promise and prospects for gene therapy are once again garnering significant attention. To build on this momentum, the National Institute of Neurological Disorders and Stroke and the Muscular Dystrophy Association jointly hosted a workshop in April 2014 on "Best Practices for Gene Therapy Programs," with a focus on neuromuscular disorders. Workshop participants included researchers from academia and industry as well as representatives from the regulatory, legal, and patient advocacy sectors to cover the gamut from preclinical optimization to intellectual property concerns and regulatory approval. The workshop focused on three key issues in the field: (1) establishing adequate scientific premise for clinical trials in gene therapy, (2) addressing regulatory process issues, and (3) intellectual property and commercialization issues as they relate to gene therapy. The outcomes from the discussions at this workshop are intended to provide guidance for researchers and funders in the gene therapy field.

Engaging for-profit providers in TB control: lessons learnt from initiatives in South Asia.

There has been a huge expansion in the private health-care sector over the past two decades, particularly in South Asia, resulting in over 80% of patients seeking care from private health providers. Despite concerns about the quality and equity of private sector service provision, most government public health bodies recognize that the private sector reaches individuals that public institutions cannot cater to, thereby being important in moving closer to universal health coverage. Numerous initiatives have been launched and are being planned to involve private practitioners in effectively diagnosing, reporting and managing infectious diseases such as tuberculosis. However, there is a notable dearth of papers discussing which elements of private sector engagement strategies are more or less successful and the ethical issues that arise when engagement strategies are operationalized. This article brings together the authors' experiences of working on projects to engage private allopathic health providers in Pakistan, Bangladesh and India for improved tuberculosis control. Motivations of and strategies required to engage private allopathic heath providers, specifically doctors, diagnostic laboratories and pharmacies, and some of the ethical issues that arise when designing programmes for engagement are discussed.