LIST OF WORKSHOPS

Workshop title: Promoting participation in health services and evaluation

What research question are participants expected to address? These can be theoretical research questions or methodological issues.
The development of more inclusive approaches to participation has been driven by changes in normative expectations around the level and quality of public scrutiny in governance (Keane, 2009). This naturally includes an increased focus on consultation and public reporting. However, there is also an increased expectation that non-governmental organisations, advocacy organisations and community will directly participate in governance (Kickbusch & Gleicher, 2011). For example, health democracy (democratie sanitaire) was recognised in France in 2002 with the passing of laws to ensure user engagement in healthcare management, patient protection and to ensure the provision of quality health care. The notion of involving community in decision-making is long-standing, where its links to self-determination are critical for establishing the legitimacy of decisions. The key research question explored in this panel is the extent to which community members and consumers are being utilised in public health and social policy-making and the impacts this has on the groups affected by the policy. As such, we seek papers from a theoretical perspective around questions of power-sharing, deliberative democracy and governance. From a methodological and evaluative perspective, tools and frameworks currently being employed to include community members and consumers are also invited. The aim of the panel is to bring together both researchers and policy makers involved in community and consumer participation to look at the benefits and challenges of various approaches to consultation, engagement, governance and greater social inclusion and power sharing, and to explore how this translates to accountability, legitimacy, trust and equity.

In which context does this topic take place? The proposal should present the context of the topic proposed and justify why, given the context, the question is relevant.
This is an important area in health and social policy making given the growing impetus to include community members and consumers in all aspects of health and social policy making. Despite the greater inclusion of community members and consumers, the extent to which power disparities and are mitigated in policy-making processes and deep inclusion takes place, is rarely thought about, let alone evaluated.  Deep inclusion consists of not only who is present for a decision-making process but also how they are involved. Achieving deep inclusion via participation in policy processes therefore requires involving not only a range of relevant stakeholders but also promoting qualitative equality, which means ensuring that individuals have a fair or equal chance to influence the priority-setting process and have their voices heard. This panel seeks to marry both theoretical and empirical approaches that evaluate the benefits and challenges of various approaches to participation and question whether meaningful participation takes place for community members and consumers.

What is the scientific relevance of the question? The presentation should provide a brief state-of-the-art and identify specific contributions expected from workshop participants.
There is growing evidence that providing increased voice to vulnerable or disenfranchised populations is important to improving health equity at a number of different levels (Beckfield & Krieger, 2009). A systematic review of the literature on the influence of political context on health equity at a national level found that the only factor consistently associated with improvements in health equity was the political incorporation of formerly subordinated groups—an association was found in 6 out of 7 studies (Beckfield & Krieger, 2009). Within countries, a meshing of top-down and bottom-up approaches to policy development has been viewed as a key mechanism to make policy and institutions more inclusive of citizens and more responsive to their needs (World Health Organisation, 1998). It would be good if a volume of papers could be collated for publication that look at both theoretical and empirical approaches to including the participation of community and consumers in health and social policy.

How will this workshop build on existing research? What hypotheses do the chairs seek to explore? What makes these hypotheses original and how will they further the available research on the key issue raised?
The key hypothesis that this panel explores are centred on the idea that health and social policy/programs are improved by the inclusion of community members and consumers in all phases of policy development. Yet, this will only occur when meaningful engagement and deep inclusion takes place, allowing for a transfer of power to traditionally disenfranchised groups. This builds on existing literature that explore the inclusion of community members and consumer members in health and social policy processes. The key gap that this panel seeks to explore is around the evaluation of community and consumer participation and whether this can have a significant impact on the ability of policy and programs to improve health equity.  There are a number of pathways via which greater voice to disadvantaged groups would be expected to contribute to improved health equity. Health inequities are produced by poorer access to economic and social resources, education and health care, increased exposure to environmental and social hazards as well as through stress, which may contribute to poorer health either directly or indirectly through the adoption of coping strategies (Blane, 1993; Macintyre, 1986; Townsend, Davidson, & Whitehead, 1990; Wilknison, 1996). Greater incorporation of disenfranchised populations in governance could improve health equity by developing social resources, improving access to resources, reorientating services to meet community needs and improving living and working conditions (Marmot, Friel, Bell, Houweling, & Taylor, 2008). Yet, there exists a paucity of evaluative works exploring the transfer of power and deep inclusion of community members and consumers.

What types of contributions would interest the panel chairs? The presentation must describe the kind of papers the chairs would like to receive: empirical, theoretical, methodological?
The aim of the workshop is to showcase the latest evidence and methods to measure participation and to model the impact community members and consumers. The workshop will consist of a series of lectures and discussions from international experts and will leave room for participants to interact and discuss important participatory issues with the speakers. It provides a forum for the exchange of expertise between researchers, policy makers as well as community and consumer advocates. Participants will be asked to provide details of questions or topics of particular interest which may be discussed in the final session. The panel seeks papers that are empirical, theoretical and methodological approaches to participation of consumers and community members in health and social policy.

Which methods will the workshop use? The document should explain the dynamics of the sessions, final outcomes, follow-up and possibility of publication.
There will be two mornings sessions that will allow for 15 minute presentations with time for questions and an afternoon session. Presentations will be grouped into theoretical approaches, methodological approaches and empirical approaches and presented on each of the three days. The final session of each day will summarise current practices and identify emerging tensions as well as future directions. The aim of the workshop is to allow for dialogue and collaboration between each of the areas. Of interest is how various countries are implementing participation and to compare perspectives. If we are successful in having our panel selected to participate at IWPP-18 in Pittsburgh, we intend to approach the following journals about a Special Issue:

o   Health Policy

o   Implementation Science

o   Social Science and Medicine

We think that it would be a good idea to have more evaluative and methodological papers selected for the Special Issue, but that are theoretically grounded. Hence, collaboration between participants are encouraged to collaborate on papers.

If the chairs have already identified possible participants, they should provide the titles of the paper proposals and the authors' references. At all events, this list of paper proposals must contain a maximum of 10 papers before it can be opened to other participants.
At this stage, identified potential participants include authors from Australia, Chile, Brazil and Canada, and we expect that following the call for papers this list will be expanded.  The following participants have expressed interest in presenting a paper at the workshop:

–        Prang, KH. “Consumer engagement to maximise the impact of public reporting of hospital performance data in Australia”

–         Pedrana, L. & Ferdinand, A.  “Strategies to increase Indigenous community participation in health: Lessons from Chile, Australia and Brazil”

–         Ferdinand, A.  “Indigenous autonomy through community participation: A dream deferred?”

–         Oyarce, AM. “Enabling participatory approaches in health through reframing medical education”.

–         Kelaher, M.  “Supporting community capacity and participation in evaluation of Aboriginal and Torres Strait Islander health services, policy and programs”.

–         La Brooy, C. “Comparing expert and consumer involvement in the creation of consensus statements and clinical guidelines”.

This panel seeks to provide a platform for the critical analysis of the role of participation in health and social policy-making and papers are invited on this theme. Consistent with the multidisciplinary nature of the concept of participation, contributions may come from a broad range of perspectives, including (but not restricted to) health policy, philosophy, political science/theory and sociology. The panel will explore both the theory and the practice of implementing participatory strategies in health and social policy. We are also interested in how policy-makers – in government and elsewhere – implement participatory agendas and the benefits and challenges of executing health and social policy with this goal in mind. Evaluative efforts that interrogate the use of participation in public policy are especially welcome. Moreover, this panel invites papers offering critical appraisals of health and social policy initiatives that enact and reinforce the participatory agendas, comparative case study approaches to participation, evaluations of participatory policies application of participatory frameworks to improve the impact of existing policies, and theoretical works that engage with key themes involving participation in health and social policy.

Since the Alma Ata Declaration in 1978, community participation has been recognized as vital to the delivery of primary health care and addressing health inequities, and it forms the basis of the WHO ‘health for all’ strategy. More recently, it has been promoted in the Ottawa Charter for Health Promotion as strengthening community action. Participation is understood to be a right that all citizens have, as outlined in Universal Declaration of Human Rights (Sharp 1992, Bracht and Tsouros 1990, Mahler 1981); governments in turn have the responsibility to provide communities with opportunities to engage in service planning and implementation. Community participation refers to the involvement of consumers of health services, such as patients or clients, families, friends, carers and the broader community at large.  In incorporating the needs and aspirations of local communities, consumers and other stakeholders, a sense of ownership is bestowed that ultimately results in better uptake of programmes and more enduring implementations (Brach and Tsouros 1990). Participation has also been noted to promote greater awareness and assist in co-operation between different stakeholders (Brach and Tsouros 1990, Slocum and Thomas-Slayter 1995). In incorporating community and consumer values and skills, program planners gain access to previously inaccessible resources and knowledge that they can incorporate into the program plans (Tenbensel 2010) as well as developing the self-reliance of local community, contributing to that community’s ability to undertake future projects (Bracht and Tsouros 1990). This panel explores the utilisation and incorporation of various participatory agendas in health and social policy making. The panel explores how participation:

1. promotes the legitimacy of collective decisions;
2. encourages public-spirited perspectives on public issues;
3. promotes mutually respectful processes of decision-making; and
4. provides an opportunity for advancing both individual and collective understanding and mitigate information asymmetries and disagreement (Gutmann 2004).

• Dr Camille La Brooy is a research fellow and lecturer at the University of Melbourne. She works in the Evaluation and Implementation Science stream at the Centre for Health Policy at the Melbourne School of Population and Global Health. She has a PhD in Political Science. Her research interests are multiculturalism, identity, social inequality and difference, health and community participation, specifically pertaining to Muslim, Indigenous and other socially disadvantaged communities. Her current research project explores consensus generation in public health. She has been a member of the International Public Policy Association since 2015, attending International Conference for Public Policy in Milan (2015) and Singapore (2017).
• Professor Margaret Kelaher is Head of Evaluation and Implementation Science at the Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne. Margaret has established an international reputation in research to improve health equity. Her work has a unique focus, bringing an action orientated and intervention-based approach to understanding complex health issues and informing theory and policy. She is one of the few health researchers whose work encompasses the continuum of population health from social determinants of health to health service delivery. Her main contributions include demonstrable policy change and methodological innovation to better inform policy. For example, her research on access to medicines among clients of remote area Indigenous health services led to changes in the Pharmaceutical Benefits Scheme to enable the approval of medicines specific to the needs of Aboriginal people and provided the impetus for programs to improve access to medicines among regional and urban Indigenous people. She is currently leading major research to ensure that genomics and genetic health services meet the needs of Aboriginal and Torres Strait Islander people.