Citizen Engagement in Health Casebook

Foreword

Citizen engagement, sometimes referred to as public involvement or participation, and societal or community engagement, is about meaningful involvement of individual citizens in policy or program development. It generally includes all of the activities organizations take to involve the communities they serve in directing policies and priorities or in their governance. It also frequently refers to processes where members of the general public, as opposed to representatives of stakeholder groups, are the main foci of the engagement, who are meaningfully involved in two-way interactions consisting of dialogue and deliberation with the health care organization or group. Ultimately citizen engagement is about sharing decision making power and responsibility for decisions.

There is a long history of governments and health care institutions in this country trying to engage citizens in decisions related to health care. Citizen engagement exercises have been conducted in all provinces, relating to most areas of care, and have used numerous methods of engagement. We have seen large national engagement exercises as part of Royal Commissions to individual hospitals engaging their local publics about the services they provide. However, while there have been many successful examples, citizen engagement is still not the norm within our health research or health care systems.

This Casebook was first conceived at a workshop I attended in Toronto, Ontario in November 2010, hosted by the CIHR funded Priority Setting in Health Care Research Group, based at the University of Toronto.1 Participants at the workshop represented health care organizations from across Canada who convened citizen engagement processes, practitioners of citizen engagement, researchers on citizen engagement, other stakeholders and citizens who have participated in these processes. One of the main recommendations arising from this two-day meeting was the need to better document and share examples of citizen engagement in health care across Canada, so that others could learn from the experiences and processes of other organizations. I and other participants also felt that health care organizations and their stakeholders would benefit from descriptions of cases where members of the general public have been engaged.

At the Canadian Institutes of Health Research (CIHR), the Partnerships and Citizen Engagement (PCE) branch is responsible for a wide variety of tasks and projects which guide, facilitate, and manage partnerships and engagement activities. As part of these activities, the PCE branch has developed the CIHR Framework for Citizen Engagement and a Citizen Engagement Handbook to help support citizen engagement across the organization and for its stakeholders. Having previous experience in developing a Partnership Casebook and dedicated expertise in this area, the PCE took the lead for this project and invited members of the Priority Setting in Health Care Research Group to act as editors.

It is my hope that the Casebook will be a useful reference for those wishing to know more about citizen engagement or wishing to facilitate citizen engagement. The cases illustrate some of the methods of citizen engagement which have been employed in the Canadian health care context. I expect that the Casebook will not only increase understanding of how to engage citizens but also increase understanding of the experiences of those undertaking citizen engagement activities. The publishing of this Casebook is an important step in promoting and facilitating citizen engagement by sharing promising citizen engagement practices.

I would like to thank the authors of the cases for their submissions, Karen Born, Roger Chafe, Andreas Laupacis and Wendy Levinson for collating and editing the Casebook and Rosa Venuta for managing the project and the production of the Casebook.

Ian D. Graham, PhD, FCAHS
Vice-President
Knowledge Translation and Public Outreach
Canadian Institutes of Health Research

Photo of the Members of the Toronto Health Policy Citizen's Council and research team

Introduction

The primary purpose of this Casebook is to highlight and share some of the diverse citizen engagement activities that are occurring throughout Canada. There are many excellent examples; more than 40 outstanding cases of citizen engagement within the Canadian health care system were submitted for review for this Casebook alone. Those chosen for inclusion in this book represent a wide range of citizen engagement activities from across the health sector (including hospitals, non-profit organizations, and provincial, regional and local governments) and the different regions of Canada (such as urban, rural/remote, and First Nations communities). By presenting these unique cases, we hope to facilitate knowledge translation and exchange about citizen engagement in health, giving the diverse perspectives, approaches and groups within the Canadian health sector the opportunity to learn, share and discuss opportunities for further practice and policy.

While this Casebook focuses on Canadian organizations and experiences, in the spirit of learning from other jurisdictions, seven principles of successful citizen engagement originally developed by Dr. Carolyn J. Lukensmeyer, the Founder and President of AmericaSpeaks, can help frame themes from the fourteen cases. AmericaSpeaks has had over sixteen years of experience engaging citizens in the United States and across the globe on a broad variety of topics, including the reconstruction of the World Trade Center site after 9-11, disaster recovery in New Orleans after Hurricane Katrina, health care reform in the state of California, and confronting the federal deficit and debt of the United States. Dr. Lukensmeyer has described seven principles of successful citizen engagement. The process, she suggests, must:

Many of these key principles are reflected in the cases presented here.

Each case in this book is structured to allow the reader a quick overview of the purpose and rationale of citizen engagement processes, what methods were used for engaging citizens, the outcomes and impacts of the engagement, and the key lessons learned in each case. While each case offers a unique perspective, they do share a number of conclusions and lessons learned.

Citizen engagement impacts policy decisions

As the cases presented here illustrate, meaningful citizen engagement can benefit both the organizations and the citizens involved in the process. It can strengthen the relationships between the health care organization and the public or communities it serves. It lets people bring their own experience to the decision making process, which can lead to better decisions that can positively impact people's health. It can even help build a stronger civic society.

While there are many benefits to engaging citizens, including informing decision makers and providing opportunities to learn from the public, most health care organizations want to know if citizen engagement can also have a positive impact on policy discussions and outcomes. Accurately measuring the impact of citizen engagement on decision making is often difficult, but a number of the cases presented here show concrete impacts from engaging citizens. The Mental Health Commission of Canada's experience (Case 2) clearly illustrates how a framework for Canada's national mental health strategy was changed as the result of citizen and stakeholder engagement and input. The leadership of Northumberland Hills Hospital in Ontario (Case 6) was able to work with citizens from the local community to make difficult decisions about how to prioritize core medical services without losing the support of the communities it served. Of note is that 96% of the Northumberland Hills Hospital's citizen engagement participants felt that they had achieved something important through the process. Ontario's Citizens' Reference Panel on Health Technologies (Case 12) showed not only that citizens can meaningfully deliberate on complicated decisions about the funding of new health technologies, but that the Panel was successful in bringing social values and ethical considerations into the decision making around these technologies. In short, citizen engagement can positively impact policy decisions.

Citizen engagement can bridge divides

A number of the cases in this book report citizen engagement as a way of bridging divides across communities. Saskatoon Regional Intersectoral Committee (Case 5) focused on the need to provide citizens with easy access to local health data to allow for more evidence-focused discussions with stakeholders, helping to bridge the information divide. Vancouver Coastal Health (Case 1) found that while stigma can be a barrier to accessing health services for people living with HIV/AIDS, community involvement and participation in citizen engagement activities can help overcome these barriers. Eastern Health (Case 13) used a patient advisory panel to begin to heal the divisions between itself and cancer patients following a major adverse event. The Toronto Food Policy Council (Case 14) has over 20 years of experience using deliberation to bring people together from across sectors, disciplines, and political parties to work on the shared aim of improving food and public health issues for the city. Given that a key barrier to improved provision of services is often the divide some individuals or communities feel between themselves and the health care system, citizen engagement can be a powerful tool, positively affecting public health and bringing diverse groups of people together for meaningful collaboration and partnerships.

The importance of communication and knowledge translation

A theme running through most of the cases in this publication is the importance of effective communication throughout the engagement processes and the need to work at translating the findings into policy. The Manitoba Métis Federation — Health & Wellness Department (Case 8) uses Knowledge Networks to work with nine regional health authorities to better serve the Métis communities across the province. The Campobello Island Health and Well-Being Needs Assessment (Case 3) recognized the need for greater knowledge translation with their local community and realized that achieving this goal may require training members of the public as peer educators.

Other cases identify problems with their engagement processes as hampering the impact on policy. Gauvin and colleagues found that a lack of transparency about the process and its recommendations likely affected the influence of the Quebec Health and Welfare Commissioner's Consultation Forum (Case 4). They also observed that a lack of proximity to the actual decision making process can be detrimental to the impact of the citizen engagement processes. O'Doherty and co-authors report that, for Human and Tissue Biobanking deliberative processes (Case 10), having an unfocused question may allow for more in-depth consideration of issues, but that it also risks lessening the impact of the outcomes of those deliberations.

Employing multiple methods of engagement

Employing multiple methods of engagement allows a more diverse group of citizens to participate in the process. For example, in a number of the cases in this book, online technologies were used to augment face-to-face discussions. Similarly, multiple and novel methods may be needed to engage marginalized communities. The New Brunswick Health Council (Case 7) found that employing a single process was not always appropriate for engaging a diverse group of participants and that it could actually harm recruitment. Based on this finding, the New Brunswick Health Council ultimately established a separate engagement exercise to ensure that young people were given sufficient opportunity to participate in the process. Canadian Blood Services (Case 9) found that when engaging on a specialized topic, it was important to reach a more "interested public" through numerous methods of engagement and outreach, such as social media. To overcome some of the barriers to engagement in northern communities, the North West Local Health Integration Network (LHIN) in Ontario (Case 11) used online tools, YouTube videos, and blogs, as well as community-led discussions and meetings, to engage over 800 people from this vast region. Tailoring the method of engagement to the preferences of the community was crucial to their success.

We would like to thank all of the groups who submitted abstracts and cases. Our hope is that this Casebook will allow others to learn from the citizen engagement practices and processes that are occurring across Canada, ultimately leading to more successful cases of citizen engagement in health care in the future.

Roger Chafe, Memorial University
Wendy Levinson, University of Toronto
Andreas Laupacis, St. Michael's Hospital
Karen Born, St. Michael's Hospital
Carolyn Lukensmeyer, America Speaks

Footnotes

Footnote 1

The Toronto Health Policy Citizens' Council Website, 2011 (accessed on 20 Jan 2012).

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