Ministerial Council on HIV/AIDS

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Towards a Broader View of Health:
Strengthening Inter - Ministerial Collaboration on HIV/AIDS in Canada

Introduction

This section of the paper:

• presents a brief overview of HIV/AIDS in Canada and in the world;
• explains why the paper was commissioned;
• reviews the objectives of the paper;
• describes the methodologies used to conduct the research;
• defines "collaboration" in the context of this paper; and
• explains how this paper is organized.

1.1 HIV/AIDS in Canada and the World

HIV continues to spread at an alarming rate, both in Canada and in other countries.

Canada

Health Canada estimates1 that at the end of 1999, there were 50,000 people living with HIV/AIDS in Canada. This compares to an estimated prevalence* of 40,000 in 1996, an increase of 24 percent over a four-year period. The number of new infections in 1999 was estimated 4,190, about the same number as in 1996. Although the number of new infections remained fairly steady from 1996 to 1999, there were significant changes in the distribution among exposure categories over this period:

• There was a 30 percent increase in the annual number of new infections among men who have sex with men (from 1,240 to 1,610).
• The annual number of new infections among heterosexuals increased 26 percent (from 700 to 880).
• There was a 27 percent decline in the annual number of new infections among injection drug users (from 1,970 to 1,430).

Despite this decline in the numbers of new infections among injections drug users, epidemiologists caution against complacency. The alarming increases in HIV infection among injection drug users in the Vancouver Downtown Eastside in the mid 1990s amply demonstrate the volatility of the epidemic. This volatility can be expected to continue, particularly because the larger problems of poverty, homelessness and addiction remain largely unchanged.

Health Canada estimates that there were 6,800 women living with HIV infection at the end of 1999, an increase of 48 percent over an estimated prevalence of 4,600 in this population in 1996. The number of new infections in 1999 was estimated at 920, about the same number as in 1996.

Health Canada estimates that there were 2,740 Aboriginal people living with HIV/AIDS at the end of 1999, an increase of 91 percent over the estimated prevalence of 1,430 in this population in 1996. There were 370 new infections among Aboriginal populations in 1999 (nine percent of all new HIV infections).

The total number of AIDS cases (late stage HIV infection) has been declining, largely due to the advent of new antiretroviral therapies. However, since 1997 the rate of decline has levelled off.

The numbers tell only part of the story. Behind the numbers are individuals, families, neighbourhoods and communities. Many of the people affected by HIV/AIDS are also dealing with other serious issues such as poverty, addictions, discrimination and incarceration. Some also live with other illnesses such as hemophilia, and forms of hepatitis. Since HIV/AIDS frequently strikes younger populations (the median age of infection dropped from 32 years in 1982-1983 to 23 years in 1986-1990²), the epidemic has a significant economic impact on the affected individual and, collectively, on society.

"AIDS is one of the key issues shaping the world today and should rank as high on the list of human concerns as globalization, peace and the environment... AIDS is no longer simply a public health issue: it cuts across agencies, disciplines, and national boundaries...There is no part of society in the hardest hit areas that is not in some way touched by the epidemic. We are talking not only about health, but about education, agriculture, the economy. AIDS threatens to roll back decades of hard-won development. Indeed, it has become a full-fledged development crisis.... The need for a collaborative approach to cross-sectoral issues is evidenced by the continuing spread of AIDS." -Dr. Peter Piot, Executive Director, Joint United Nations Programme on HIV/AIDS (from a speech given in London, England in September 2000)

There has been progress. New treatments have enabled some people with HIV/AIDS to regain an active lifestyle including, in some cases, returning to work. Prevention and outreach programmes have slowed the spread of HIV. Our understanding of the dynamics of the epidemic has increased significantly since the first reported case in Canada in 1982. However, the pressure remains to do more and to do it more effectively. No cure or vaccine exists; the numbers of people affected continues to increase; it is too soon to measure the full effect of the new treatments; for some people, the side effects of the treatments are debilitating; not everyone can manage the drug regimens; and, over time, people continue to die. Underlying the epidemic are social factors, such as poverty and stigma, that continue unabated.

The World

UNAIDS and the World Health Organization estimate³ that at the end of 2000, there were 36.1 million people living with HIV/AIDS in the world. In 2000, there were 5.3 million new infections. Each day, another 15,000 people are infected. Since the start of the epidemic, 21.8 million people have died from AIDS, 4.3 million of them children. Over 95 percent of all cases of HIV and all deaths from AIDS occur in the developing world.

The impact of the epidemic on many developing countries is so severe that HIV/AIDS is now being recognized as a threat to world security. The issue has been on the agenda of the United Nations Security Council. In 2001, the United Nations General Assembly will hold a special session to discuss the epidemic.

1.2 Why This Paper Was Commissioned

HIV/AIDS is one of those issues that challenges our traditional structures and the ways in which we respond to health issues. In fact, HIV/AIDS has frustrated all attempts to isolate it and to deal with it strictly as "just a health issue." After over 15 years of confronting HIV/AIDS in Canada, it is timely to reflect on how the federal government structures its response to HIV/AIDS. The Ministerial Council on HIV/AIDS commissioned this paper because it believes that inter-ministerial collaboration is an important tool to help attain the goals of the Canadian Strategy on HIV/AIDS. The council also believes that the positive impact of inter-ministerial collaboration can extend beyond HIV/AIDS and beyond health services.

Collaboration is an important component of Canadian Strategy on HIV/AIDS. The Strategy states that its vision is

to move towards a nationally shared Strategy with improved collaboration among all levels of governments, among communities, non-governmental organizations, professional groups, institutions and with the private sector.⁴

Inter-ministerial collaboration is not new. There are many examples of collaboration, on both HIV/AIDS and other issues. The council commissioned this paper to gather the lessons to be learned from existing collaborations, and to answer the following questions:

• What are the benefits of inter-ministerial collaboration at the federal level?
• How should we apply the lessons learned from existing collaborations?
• Why should departments and agencies that do not focus on health issues become involved?
• How can we expand collaboration on HIV/AIDS to departments and agencies that have not been involved to date?

1.3 Objectives of the Paper

The objectives of this paper are:

• to briefly describe the history of inter-ministerial collaboration at the federal level in Canada under the Canadian Strategy on HIV/AIDS;
• to describe how other governments have handled inter-ministerial collaboration on HIV/AIDS;
• to discuss the factors that enhance inter-ministerial collaboration; and
• to present recommendations on how Health Canada should proceed to strengthen inter-ministerial collaboration at the federal level.

1.4 Methodology

The work was done in three phases:

• developing the framework;
• reviewing relevant documents; and
• interviewing key informants.

Developing the Framework

The authors consulted the members of the Championing Committee of the Ministerial Council on HIV/AIDS to obtain guidance and to capture their vision for the project. Preliminary interviews were held with staff from the HIV/AIDS Policy, Coordination and Programs Division of Health Canada. The input from the Championing Committee and from Health Canada staff helped to refine research and consultation strategies and to identify issues and problems, the types of information needed, and an initial list of key informants (particularly for Canada).

Reviewing Relevant Documents

A number of relevant documents from Canada and other countries were reviewed, including provincial and federal government reports, and literature on collaboration and on determinants of health. See Appendix V for a list of the documents.

Interviewing Key Informants

Key informants in Canada and in other countries were identified and interviewed. Interview questionnaires were developed.

Canada

In Canada, key informants were identified from three different groups:

• the federal government;
• provincial and territorial governments; and
• community-based organizations.

Key informants from the federal government included:

• staff in the HIV/AIDS Policy, Coordination and Programs Division, Health Canada;
• staff in other divisions of Health Canada involved in non-HIV/AIDS-specific inter-ministerial collaboration;
• members of the Interdepartmental Coordinating Committee on HIV/AIDS; and
• staff in departments that have a history of HIV/AIDS-specific programming.

Key informants from provincial and territorial governments included health department staff in British Columbia, Ontario and Quebec. Some of these key informants were members of the Federal, Provincial and Territorial Advisory Committee on AIDS.

In the community sector, interviews were conducted with representatives of organizations involved in the Canadian Strategy on HIV/AIDS and individual community members active on provincial or federal HIV/AIDS advisory committees.

A complete list of key informants can be found in Appendix I.

Other Countries

Contacts previously developed through earlier international HIV/AIDS initiatives were used as a starting point to identify key informants in other countries. The Joint United Nations Programme on HIV/AIDS (UNAIDS) and the International Council of AIDS Service Organizations (ICASO) were also sources of information and contacts. Notices were placed on selected Internet listservs to obtain relevant international input. These notices generated several contacts, particularly from developing countries.

As a result of these efforts, key informants were identified in the following countries:

• Australia
• India
• Sweden
• Switzerland
• Thailand
• Uganda
• United Kingdom
• United States of America

Wherever possible, interviews were conducted with key informants from both the government and community sectors in each country.

See Appendix I for a complete list of the key informants.

Questionnaires

For the key informant interviews, separate questionnaires were developed for government respondents and for community representatives. The questions were not applied rigidly; rather, they were used as a guide to engage people in conversation, and to help them share examples of inter-ministerial collaboration and reflect on lessons learned from these collaborations. Most of the informants were interviewed by phone, but a few were interviewed in person. Some of the international contacts chose to respond to the questions by e-mail.

Both questionnaires are included in Appendix II.

1.5 What is Collaboration?

Collaboration is a way of working together. One source in the literature describes different stages of working together as follows:

• Cooperation is characterized by informal relationships that exist without any commonly defined purpose, structure or planning process.
• Coordination is characterized by more formal relationships and understanding of compatible missions. Some planning and division of roles and communication channels are established.
• Collaboration brings groups together into a new structure with a commitment to a common purpose. This level requires greater clarity of roles and sharing of resources.⁵

Collaboration has also been described as:

A mutually beneficial and well-defined relationship entered into by two or more organizations to achieve common goals. The relationship includes: a commitment to: mutual relationships and goals; a jointly developed structure and shared responsibility; mutual authority and accountability for success; and sharing of resources and rewards.⁶

Sometimes, collaboration is defined more generally to encompass a broad spectrum of ways of working together. In this sense, collaboration could include co-operation and coordination, as described in the first definition above.

More and more organizations are trying out various forms of collaboration. Sometimes the funders require this; other times, organizations do it because they see the need to share resources or solve a common problem. At times, collaboration evolves from the simple recognition that success will be more likely when people bring their skills and differing perspectives together to work on a common goal.

Therefore, collaboration is often discussed in the context of independent agencies working together on a common issue or of multi-sectoral projects involving government, private sector and the community. This paper focuses upon collaboration within the federal government. Although part of the same "organization," each government department and agency is itself a large organization with its own culture, perspectives and priorities. Bringing these organizations together to work on issues has its challenges. However, the compartmentalized (or "silo") approach to government is being seen as less effective and at times counter-productive in an environment that is increasingly complex and where issues cross jurisdictions.

In this paper, collaboration is being defined broadly, in a way that encompasses a mix of informal and formal working relationships. In the context of the federal government and the Canadian Strategy on HIV/AIDS, therefore, collaboration includes:

• ministers working together to achieve the goals of the Strategy;
• departments and agencies working together to achieve the goals of the Strategy; and
• departments and agencies integrating HIV/AIDS into their work.

By integrating HIV/AIDS into their work, departments and agencies can be said to be collaborating on the Canadian Strategy on HIV/AIDS even when they are not working directly with other departments and agencies.

1.6 How this Paper is Organized

Section 2.0 Background provides a brief history of inter-ministerial collaboration on HIV/AIDS in Canada, at both the federal level and the provincial-territorial level, and in other countries. It also describes inter-ministerial collaboration in other fields at the federal level in Canada.

Section 3.0 Making the Case for Collaboration provides arguments in favour of inter-ministerial collaboration at the federal level in Canada. It also examines the role or potential role of individual departments and agencies in HIV/AIDS.

In Section 4.0 Case Studies, six examples of inter-ministerial collaboration are analyzed in depth. Insights are presented on what worked, what did not work and what lessons were learned.

Section 5.0 Potential Barriers to Collaboration reviews the obstacles to inter-ministerial collaboration that were identified by the key informants interviewed for this paper.

In Section 6.0 Strategies for Successful Collaboration, strategies that can contribute to successful inter-ministerial collaboration are identries outside Canada. Appendix IV lists the goals and objectives of British Columbia's Interministry Committee on HIV/AIDS. Finally, Appendix V provides a list of the references consulted during the preparation of this paper.

Note on terminology The term "other departments and agencies" is used throughout the paper to denote departments and agencies other than Health Canada.

 

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