T17aP10 - Democratising Health and Social Policy Making

Topic : Sectorial Policy - Health

Panel Chair : Margaret kelaher - mkelaher@unimelb.edu.au

Panel Second Chair : Daniel Weinstock - Daniel.weinstock2@mcgill.ca

Panel Third Chair : Volker Amelung - amelung.volker@mh-hannover.de

Objectives and Scientific Relevance of the panel

Call for papers

Session 1 Promoting participation in health services and evaluation


Margaret kelaher - mkelaher@unimelb.edu.au - University of Melbourne - Australia

Volker Amelung - amelung.volker@mh-hannover.de - Medical University Hannover

Independence and control in Indigenous community participation in health

Angeline Ferdinand - a.ferdinand@unimelb.edu.au - University of Melbourne - Australia

Margaret kelaher - mkelaher@unimelb.edu.au - University of Melbourne - Australia

Over the past few decades, interest has grown in the decentralisation of governing across fields as diverse as education, health, and justice (Atkinson, Medeiros, Oliveira, & de Almeida, 2000; Morgan, 2005; Stenson, 2005), enacted through a reduction in rigid hierarchical structures, increasing partnerships with civil society and localised decision-making processes—an impulse that has gone hand-in-hand with the rising discourse of community participation in health. Community participation in health is particularly relevant for Indigenous peoples, who are often excluded from decision-making and priority-setting in the development and implementation of health services. Indigenous community participation in health is not only a response to systemic barriers in accessing biomedical health care or a lack of culturally appropriate health care, but is underpinned by the principles of self-determination, autonomy, social justice and cultural retention.

Indigenous community participation in health in Chile has led to the development and implementation of a number of health services administered and governed by Indigenous community organisations. However, these decentralised governance structures, established to enable localised influence over policies, processes and services, are nevertheless contradictory in that they are strongly shaped by State power. This paper examines how staff from Chilean Indigenous community health care services perceive the concept and purpose of Indigenous community participation in relation to State policies and frameworks (Foucault, 1991; Swyngedouw, 2005; Taylor, 2007).

In examining the perceived role of Indigenous community participation in health, there were apparent tensions between the themes of community ‘empowerment’ and ‘responsibilisation’ (Clarke, 2005; Taylor, 2007). Taken as a whole, interviews with staff from community controlled health centres highlighted a dual discourse around community participation and the relationship between community organisations and the State: interviewees spoke about the responsibilisation of Indigenous communities on the one hand—that is, devolution to communities of the responsibility for service provision and attendant risks that would otherwise lie with the State—and on the other, a desire to increase Indigenous autonomy in health and more generally through the assumption of roles that allow for engagement and representation within the Chilean State. Corresponding processes are those by which the State shifts responsibility for service provision to communities and community organisations, but retains control of the ways service is provided through imposition of regulations and obligations, normally tied to financial arrangements (Taylor, 2007). Here, interviewees articulated the utilisation of participatory processes to increase Indigenous independence while at the same time being mindful of the necessity of compliance with such regulations imposed by the State in order to maintain this position.

The imposition of State-centred regulation onto Indigenous governance structures as a necessary part of the development of participatory models has profound implications for the capacity of Indigenous communities to realise their desire for independence and autonomy through these mechanisms. Consideration therefore needs to be given to how best to balance the ethical considerations such processes present.

How do local participatory governance reforms influence equitable access to health services? The role of Panchayat Raj Institutions(PRI) in Kerala, India

Shinjini Mondal - shinjini.mondal@mail.mcgill.ca - McGill University - India

Prasanna Saligram - psaligram@iiphg.org - India

Varghese Joe - joe.varghese@phfi.org - India

Jith Jagajeevan Ramadevi - jrjith.unni@gmail.com - India

Deliberative and participatory forms of governance have been widely theorized to improve health service responsiveness, community empowerment, and political and administrative accountability, with an eventual impact on better health care access. In India, health was transferred to Panchayati Raj Institutions (PRI) as one of the subjects under the 73rd constitutional amendment, to facilitate decentralization. The study explicates the pathways through which institutions of local participatory governance (LPG) influence access to health services for the poor and vulnerable, through a case study of the Panchayati Raj Institution (PRI)- local governance system in Kerala state, India. We use actor-centred approaches for policy implementation to bring out the interactions and negotiations between groups of actors within complex social and organizational contexts. We followed principle of framework analysis for qualitative data analysis for applied policy research.


In India, LPG is synonymous with Panchayati Raj Institutions (PRI) locally elected bodies operating at village, sub-district and district levels with financial and administrative powers over social services. The state of Kerala has extensively implemented democratic decentralised reforms over two decades. The rich history of social movements and people’s campaign for decentralized planning adds to social capital and builds the context in the state. The emergent platforms for participation, formal and non-formal increased avenues for community participation. On one hand formal institutions extended support in form of mobilising funds, medicines, services from the health department, thus assuring the society about the legitimacy and public credence of such initiatives.  On other hand participation of non-formal structures in form of community volunteers, felt need identification and beneficiary identification gave a community ownership. These collective agencies enabled mobilization of different cultural, regional and religious characteristics of community. Being more local in nature, the nodes of decision making moved closer to people, thus creating more spaces that are transparent and promotes co-creation and interaction. Leadership by individuals and organizations has also emerged as pathway for better responsiveness. During the study there were numerous individuals’ names quoted who were instrumental in getting an initiative started or expanded.


Despite being able to introduce many innovations, initiatives and projects to respond to local people’s health needs there remains caveats. Challenges were closely linked to design of decentralization. Health sector was not completely devolved, administratively health personnel were accountable to their line department while functionally they were devolved to the LPGs. Structural factors also inhibited local governments to address issues of resource allocation between geographies, location of health centres and addressing staff vacancies.


Participatory governance is not a panacea for addressing issues of health inequity. Carefully created institutional mechanisms are required in the design of LPG to address the issues of marginalised sections and to promote equity. The big challenge is to restructure governance system to make it appropriate for decentralization and participation without losing its core essence of being accountable and transparent.




Analyzing of the Present Situation and Influencing Factors of the Health-related Quality of Life of Rural Elderly Patients with Chronic Diseases in Shaanxi Province

Li Dan - 1310407250@qq.com - China

Objective:  To understand the status of the health-related quality of life of elderly patients suffering from chronic diseases in rural areas of Shaanxi Province, and analyze the influencing factors, in order to establish an evidence base for formulating policies for the relevant departments.

Method:  A questionnaire survey was conducted on 8055 elderly people over 65 years in Shaanxi Province with the EQ-5D scale, and logistic regression and tobit regression model was employed to analyze the influencing factors of health-related quality of life. 

Results: The score of EQ-5D indexes of the elderly patients with chronic diseases in Shaanxi Province was 0.87, and the score of EQ-VAS was 70.79. The factors affecting the score of the indexes are the region, marital status, educational level, employment status, age, the prevalence in two weeks, drinking, exercise conditions; The factors influencing the scores of VAS were educational level, employment status, age, other medical insurance, prevalence in two weeks, hospitalization in a year. 

Conclusion:  The health-related quality of life of the rural elderly patients with chronic diseases in Shaanxi was kind of bad, and it could be impacted by education level, employment status, age, illness in two weeks.Etc. The government should make policy under the full consideration of the influencing factors. First, enlarge the investment in cultural and athletic facility in rural areas to enrich the cultural life in rural areas. Secend, perfect old-age insurance and minimum living security system in rural areas, and improve the living standards of the elderly who have no income and labor ability. Last, strengthen the health management of chronic diseases in the elderly, and improve their health related quality of life.

Reframing evaluation in Aboriginal and Torres Strait Islander health towards a health equity perspective

Angeline Ferdinand - a.ferdinand@unimelb.edu.au - University of Melbourne - Australia

Margaret kelaher - mkelaher@unimelb.edu.au - University of Melbourne - Australia

Effective evaluation practices are essential to ensuring that the policies and programs delivered to Aboriginal and Torres Strait Islander people reflect best practice.  Not only is evaluation crucial to increasing evidence by providing positive exemplars, it also serves to identify and ameliorate or avoid unintended negative consequences of policies, programs or practices. Part of the role evaluation plays in increasing transparency is through making the goals, objectives and theorised pathways between these and the actions undertaken explicit.  However, increasing health equity through the practice of evaluation is rarely an explicitly stated goal of evaluation.


There is widespread agreement that evaluation in Aboriginal and Torres Strait contexts needs to incorporate ethical principles, including being culturally appropriate, but there is less consensus regarding what this looks like in practice (AHURI 2002).   The incorporation of Aboriginal and Torres Strait Islander perspectives in evaluation is imperative to reframe evaluation in order to reflect the priorities and expectations that Aboriginal and Torres Strait Islander communities have regarding the policies, programs and services that affect their health.  This necessitates research conduct in evaluation that has at its centre strong partnerships with Aboriginal and Torres Strait Islander communities and an emphasis on capacity-building.  Evaluation of health policy, programs and services also needs to consider the role of Aboriginal and Torres Strait Islander people and communities in the planning, development and implementation of the evaluation targets.  The presence or absence and quality of governance structures within programs, policies and services, including accountability mechanisms and decision-making processes must therefore be central to the evaluation framework. 


The current paper describes the development of a coherent framework that guides the evaluation of policies, programs and services to improve the health of Aboriginal and Torres Strait Islander people.  The project aims to ensure that delivering benefit to community is an explicit of goal of the conduct of evaluations as well as a standard element of evaluations in addition to the policies, programs and services that are being evaluated. This will ensure a greater focus on both Aboriginal and Torres Strait Islander engagement in governance, agenda-setting and capacity building.  The approach incorporates the work of Pratt and Loff’s Research for Health Justice framework (Pratt and Loff 2012) to orient research conduct in the evaluation of Aboriginal and Torres Strait Islander health policy, programs and services towards a health equity perspective, focusing on the involvement of local stakeholders in priority setting, community benefits before and after the research, capacity-building and research partnerships.  The project serves to improve the development of policies and programs that incorporate the viewpoints and values of Aboriginal and Torres Strait Islander communities, thereby supporting the creation of programs and services that are more relevant to and appropriate for the communities they serve.


Session 2 Democratising health governance


Margaret kelaher - mkelaher@unimelb.edu.au - University of Melbourne - Australia

Daniel Weinstock - Daniel.weinstock2@mcgill.ca - McGill University - Canada

Political Will for Health Governance – An Analysis of Parliamentary Questions on Health in India

Prithivi Prakash Sivaprakash - drprithiviprakash12@gmail.com - Public Health Foundation of India - India

Madhusudan Yadav - madhusudan.tiss@gmail.com - National Health Systems Resource Centre - India

Venkatesh Roddawar - venkatesh.roddawar@gmail.com - World Bank - India

Background: India’s bicameral parliament is the highest policy making authority in the country. Elected through universal adult franchise the Lok Sabha (or House of the People) has a special responsibility in driving the ‘political will’ of the government. Through questions addressed to Government (during Question Hour) the nation is informed on various acts of commission and omission. National Rural Health Mission took multiple steps in initiating reforms in health ‘systems’ and functioning of the 15th Lok Sabha (2009-2014) coincided with peak implementation of National Rural Health Mission (now National Health Mission).   

Methodology: Starred questions reflect issues which need particular attention and they are answered orally by Health Minister on the floor of house. All starred questions (406) posed to the Ministry of Health and Family Welfare for the period 2009-2014 were accessed from the Lok Sabha’s website, tabulated and a primitive keyword analysis was performed. Based on result of this analysis the questions were placed under relevant pre-decided sub-themes and further under broader themes. Depending upon the hits under each broader theme, three themes with most hits were chosen and the questions under them were subjected to a more in-depth analysis.

Results: More than 75% of the questions fell under 7 major themes of regulation, health programs, health statistics, references to reports or research, health financing, infrastructure and health research. Of these maximum questions (28%) concerned with regulatory issues followed by health programs (16%) and health statistics (12%). In questions related to regulations key areas of discussion were tobacco products, food products, drugs and medical education. In health programs and health statistics Reproductive and Child Health components were discussed more frequently as compared to communicable and Non-communicable disease.

Discussion: While the Parliament is discussing areas pertaining to regulations very often, its focus on discussions related private sector care (both in care provision and education) is limited. Increasing costs of care and underfunding of public health systems also find limited attention. As these areas are of particular concern to Indian Health System, more discussions on them is desired in Parliament. Similarly health program related deliberations are not adequately informed by the changing pattern of disease burdens. This is reflected by limited discussions on Non-Communicable Diseases. However, it is encouraging to note that for all the activities of government in health sector the Parliament has desired an update on implementation status, financial provisions and future implementation plans.

Democratizing Health and Social Policy: A Milestone of New Turkey

HAFIJUR RAHMAN - hafijdu@gmail.com - Gazi University - Turkey

In contemporary period, Turkey made a successful reform in health and social sector. A sustainable social security system was made in Turkey with a various programs and projects. In 2006, The Social Security Institution was established with a great purpose of unifying three social security institutions which were provided different social security in different level. By this ways, the problems stemming from the fact that citizens who were formally under the social security institutions, the retirement fund and the social security organization for Artisans and the self-employed benefited from different institutions and had different standard have been eliminated. With the implementation of the family practitioner system, all citizens have started to enjoy the constant guidance of doctor free of charge. “Patient Right Department” has been established in the state hospitals. Bureaucracy in the healthcare has been minimized and therefore paperwork has been eliminated; all citizens can access now all health institutions with their Turkish Republic identity number. In addition to this Turkey has taken a lot of initiative for ensuring social security for all citizens like social aid and support project for children, the elderly, disabled, widows and orphans of war and duty martyrs, relative of martyrs, veterans and terror victims, disadvantage groups and so on. Use of technology especially service by mobile phone and internet has been ensured in providing social security. In this paper, the major strategies of democratizing health and social policy of Turkey will be examined. With a qualitative research methodology from the research analysis of previous theoretical discussion and empirical description this paper would inform academician and policy makers on democratization which is impacting on the processes, outcomes and quality of health and social policy making of New Turkey. In order to collect secondary materials I used many reports from different ministries and government institutions, books, journals, media, libraries and relevant websites.

National Councils as hybrid forums: instruments of transversal public action in Brazilian participatory institutions for health, environment and human rights

Bravo Cruz Fernanda Natasha - fernandanatasha@gmail.com - University of Brasília (UnB). Graduate Program in Development, Society and International Cooperation (PPGDSCI) and Department of Public Policy Management (DGPP). - Brazil

Doriana Daroit - doriana.daroit@gmail.com - Universidade de Brasília - Brazil


The Brazilian National Councils of Health, Human Rights and Environment are participatory institutions that consider the complexity and multidimensionality of public problems demanding efforts to reconfigure public management. Although they were instituted, respectively, in 1937, 1964 and 1981, the three councils were democratically established with the advent of the Brazilian Constitution of 1988. They also had profound changes in their compositions, purposes and modes of action, especially between 2003 and 2016, period when the Brazilian federal executive branch was led by representatives of the Workers' Party. We propose to consider the dynamics of interactions and nexuses between society and State in these participatory institutions, highlighting in particular intersectoral and transversal dynamics, re-reading the definitions usually attributed to such managerial logics, recognizing their potentials and limits and articulating them to the categories of complexity (MORIN , 2003), collective action (HATCHUEL, 2005) and public action (LASCOUMES, LE GALÈS, 2012; MULLER, 2013), as well as their respective concepts of dialogic, knowledge and relations, referential and instrument. The study represents a doctoral research effort that aims to understand the course of hybrid forums (CALLON, LASCOUMES, BARTHE, 2009) public action going beyond the sectorial scope to take up transversal impulses. The public action instruments (LASCOUMES, LE GALÈS, 2004, HALPERN et al, 2014) that form the three forums are the focus of the paper, considering internal rules, resolutions, motions, minutes, and conference documents that formally establish guidelines, modes of organization and effects of the councils. Through the ethnography of council practices, which included observation of meetings, more than sixty interviews with national councilors and documentary analysis, we have investigated how public action instruments engender complex processes of representation and democratic construction by actors with multiple referentials, from different sectors, segments, groups and institutions. By introducing an analytical model of degrees of dialogism for transversal and participatory instruments of public action, we present how devices and techniques operate in national councils. We have discovered that the possible results of Brazilian national councils public action, all related to the propagation of their own referentials, strengthen the consideration of three dimensions for instruments analysis: management philosophy, organizational model and technical substrate. These lenses have shown us that the degree of dialogism of hybrid forums instruments correspond to the establishment of a plural composition, observing an equal distribution between governmental and non-governmental representation, and the possibility of nongovernmental representatives accessing directive functions. A diversity of knowledges can contribute to the qualification of the forums but it is not always related to the democratization of decisions: on the contrary, the diversity of institutional experts in one of the national councils studied, given the high proportionality of governmental actors, is an element that underlies its low degree of dialogism.

Session 3 Improving particpatory processes in policy


Daniel Weinstock - Daniel.weinstock2@mcgill.ca - McGill University - Canada

Volker Amelung - amelung.volker@mh-hannover.de - Medical University Hannover

Creating consensus: an exploration of consensus statement generation in health, an international comparison.

Camille La Brooy - clabrooy@unimelb.edu.au - The University of Melbourne - Australia

Margaret kelaher - mkelaher@unimelb.edu.au - University of Melbourne - Australia

In recent years, there has been a remarkable increase in the number of consensus statements used to inform policy and guidelines in public health and medicine. This stems primarily from the need to assist policymakers, clinicians and managers to understand and incorporate an increasingly complex body of biomedical research into practice. Further impetus for this trend comes from broader issues such as the by emergence of evidence-based medicine (Priest et al. 2014) and rising health care costs (Crengle et al. 2014; Kelaher et al. 2014). This phenomenon has simultaneously coincided with an exponential increase in the number of stakeholders in health and medicine. This has likely contributed to the increase in the number of agencies commissioning and interested in consensus statements. There is also an increasing trend for consensus statements to be used as a way not only to inform policy practice but as a way to provide public accountability for policy and clinical decisions. As a result of this, the quality of consensus statements has been criticised in terms of the process of their development, the nature of the consensus they achieve, and their impact on public and policy perceptions of the role of science. (Sarewitz 2011) The expertise, ideological and/or financial interests of relevant stakeholders participating in the generation of consensus statements has come into question. In addition, where power inequalities exist between stakeholders, it is likely that deliberative processes will merely reinforce the status quo, giving an effective voice only to those stakeholders with considerable power and resources. (Young 2000) As such, this paper presents explores the utility, value and risks associated with consensus statements. It presents the findings of qualitative interviews undertaken with commissioners, policy makers, practitioners and consumers of consensus statements in a multi-region comparison that looks at the US, Australia, the UK and Europe. Four key areas of consensus generation are examined in depth. These areas include: genetic testing, obesity, depression and medical imaging, specifically focusing on cardiovascular imaging.  It explores key issues such as deliberative structures, participation of stakeholders, the perceptions of the value and risks associated with consensus statements; reasons for choosing consensus statements over other approaches; selection of participants; consideration of conflicts of interest and relationships; level of participation in consensus statements by policy makers, researchers, practitioners and the public; processes of generating consensus; processes for ensuring qualitative equality; the nature of consensus achieved; concerns about the process of generating consensus; as well as positive and negative exemplars of experiences with consensus statements.

The impact of public performance reporting on quality of care: A multiple stakeholders’ perspectives

Khic-Houy Prang - khic-houy.prang@unimelb.edu.au - The University of Melbourne - Australia

The impact of public performance reporting on quality of care: A multiple stakeholders’ perspectives


Khic-Houy Prang1, Rachel Canaway1, Marie Bismark1, David Dunt1 and Margaret Kelaher1


1 Centre for Health Policy, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Australia



Mandatory public performance reporting (PPR) of hospitals has come to be seen as a key tool in improving hospital quality internationally.  PPR is hypothesised to improve quality of care through two pathways: 1) leading consumers to select high quality healthcare providers and services; 2) eliciting organisational response to improve quality by identifying areas in which they underperform (1). 


In Australia, national mandatory PPR for public hospitals was introduced in 2011 with the launch of the MyHospitals website (2).  However, most states have their own websites and report on a greater range of performance variables (3, 4).  PPR is not mandatory for private hospitals, although some participate on a voluntary basis. 


Despite a shift to mandatory PPR in hospitals in Australia and around the world, evidence of its impacts on quality of care is mixed (5).  To date there has been no study of the impacts of PPR in Australia.



The aim of the project is to identify strategies to improve the impact of Australian PPR on quality of care in hospitals by examining the perspectives of multiple stakeholders.



Semi-structured interviews were conducted with 98 stakeholders in Australia (face to face or via telephone).  This included 7 healthcare consumer advocates, 19 purchasers (public and private funders of healthcare services), 15 providers (clinicians and administrators), 17 senior hospital executives (hospital chief medical officers and directors of medical service) and 40 general practitioners (GPs). All interviews were audio recorded and transcribed verbatim.  The data were analysed using thematic analysis.



Stakeholders shared similar perceptions regarding the role of PPR of hospitals such as increase transparency, accountability and quality improvement activities.  However, it was unclear who the primary intended audience of PPR was (e.g. consumers, purchasers or providers).  Additional perceived barriers of PPR included: 1) conceptual (reporting framework); 2) systems-level (lack of consumer choice, lack of consumer and clinician involvement, jurisdictional barriers, lack of mandate for private sector reporting); 3) technical and resource related (data complexity, lack of data relevance consistency, rigour); and 4) socio-cultural (provider resistance to PPR, poor consumer health literacy, lack of consumer empowerment).  Suggested strategies for improving PPR included: 1) conceptual (definition of ‘public’); 2) framework development (primary audience and objective, desired outcomes and impacts, relevant data needs, data collection, reporting and feedback mechanisms); 3) systems-level considerations (public and private sector reporting, institutional reporting cultures, leverage reputational incentives, involve all relevant stakeholders).    



Whist stakeholders were generally supportive of PPR; current PPR of hospital data appeared unlikely to influence consumer choice as it is unclear who the primary intended audience is.  Stakeholders highlighted the need to tailor and align the objective of PPR with its relevant audience (consumers, providers or purchasers) and audience needs in order to increase PPR awareness and usage, and to strengthen its impact on quality of care.  Multiple PPR frameworks may be required to suit different audiences. 



1.            Berwick DM, James B, Coye MJ. Connections between quality measurement and improvement. Medical Care. 2003;41(1):I-30-I-8.

2.            Australian Institute of Health and Welfare. MyHospitals 2017 [16 January 2017]. Available from: http://www.myhospitals.gov.au/.

3.            Government of Western Australia Department of Health. Our performance 2017 [16 January 2017]. Available from: http://ww2.health.wa.gov.au/Our-performance.

4.            Bureau of Health Information. Hospital quartely 2017 [16 January 2017]. Available from: http://www.bhi.nsw.gov.au/BHI_reports/hospital_quarterly/HQ26.

5.            Chen J. Public reporting of health system performance: A rapid review of evidence on impact on patients, providers and healthcare organisations. Evidence Check. 2010.


International Panel on Social Progress: Understanding institutions and collective actions in shaping social transformations

Vivian Lin - linv@wpro.who.int - World Health Organization - Philippines

Vivian Lin, lead author in international organizations and technologies of governance, and chair of cross-cutting thematic group on health 


Since 2015, some 300 social scientists have been involved in reviewing the state of social progress in the world, ie what the evidence is about what gives rise to social and economic inequalities, what measures improve them, and what is the prospect for social and economic transformations. This process of review and deliberation has now produced preliminary findings and policy recommendations. In nearly all sectoral policy areas, the dynamics between collective action and institutions, interconnected at local, national and global levels.


This presentation will reflect on the processes of the project as well as report on 2 areas of work within the IPSP (the influence of international organizations and technologies of governance in shaping social progress, and global health), framed by the overall project. International organizations commonly use a mix of four technologies of governance – legal instruments, accountability processes, indicators, and participatory mechanisms. In the health sphere, as with other arenas, the interactions with non-state actors inform the use of all governance strategies, although power differentials across non-state actors add complexities to the dynamics of policy-making and governance. Nonetheless, if gains to date in social progress are to be safeguarded, as well as further advances be made, stronger participatory and deliberative mechanisms will be necessary.

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