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Civil society involvement

Recent health service reforms in many countries emphasise the importance of public involvement, including the issues of involving target groups in health and social service planning, commissioning and delivery.  Concepts such as ‘participative democracy’, ‘target group participation’, ‘civil society involvement’, ‘community engagement’  and ‘community consultation’ embrace a wider understanding of involvement as more than just ‘educating’ or ‘passing on health messages’.

In recent years, many countries in Europe have created a supporting framework for the target group involvement. This applies to decision-making processes both within services (e.g. client advisory boards) and externally (e.g. civil society forums, community working groups). In such initiatives, community and client involvement is understood to be a fundamental, underlying principle in the planning and delivery of public services so that they meet the needs of all individuals in the community.

For further reading, the brochure ‘Nothing about us without us’ published by the Canadian HIV/AIDS Legal Network provides a good overview of international self-organising. http://www.aidslaw.ca/publications/interfaces/downloadFile.php?ref=574

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International drug user organisation

The development of international harm reduction occurred hand-in-hand with the organisation of the international drug user community.  Over time, with the introduction of new participants and activists from different countries and backgrounds (such as those from the nightlife scene and recreational user movements) an international  movement was created.

“The prohibition of drugs inevitably leads to the development of a community. Drug use is illegal ipso facto drug users are criminals.  Forced to develop economic and social networks to keep one’s individual supply of drugs achievable and I must confess, to keep those not involved in as much ignorance of our activities as possible.  Outside our individual countries we are bonded by a common experience.  That goes beyond language, cultural or regional diversity.  Our common experience of discrimination, our lack of human rights speaks to every illicit drug user.

Jude Byrne, drug user activist, chair person of INPUD, Australia

Drug users in Canada, New Zealand, Australia, and to some extent the United States were successful in mobilising their communities and contributing to the development of effective policies and HIV/health services.  During 2005-2006, the first user union was established in the United States.  Voices of Community Activists and Leaders (VOCAL) was founded in New York City after initially being funded to serve as an advisory committee on hepatitis and HIV.

Alongside these developments, the scope of activities moved beyond HIV and health to include human rights and fighting for fair and effective drug policies.

Various international networks have been established over time, including INPUD (the International Network of People who Use Drugs) that was initiated in 2006 at the International Conference on the Reduction of Drug Related Harm in Vancouver, Canada.  INPUD’s mission statement clearly reflects the peer-led basis and rights-based approach of the organisation:

“INPUD is a global peer-based organisation that seeks to promote the health and defend the rights of people who use drugs.  We will expose and challenge stigma, discrimination and the criminalisation of people who use drugs and its impact on our community's health and rights.  We will achieve this through processes of empowerment and international advocacy”.
INPUD mission statement

The principles of INPUD are listed in the Vancouver Declaration. http://www.svenskabrukarforeningen.se/?q=node/233

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Published: 30 November 2011

European drug user organisation

This part will describe the self-help and advocacy organisations of users.
The first initiatives date back to the 1970s. The first recorded self-help organisation among drug users was in Europe, when in 1977 the Rotterdam Junkiebond was created in the Netherlands.

This group, led by an inspirational activist user, Nico Adriaans, started the first advocacy work in the Netherlands.  The continuity of Junkiebond largely depended on the personal involvement of individuals, and inspired the development of many other initiatives throughout Europe.

The Rotterdam initiative was soon followed by the MDHG in Amsterdam.  A potent mix of drug users, ex-users, parents of drug users, critical social workers, political activists and other interested people joined forces to develop a humane and effective drug policy focusing on ‘the Dutch heroin epidemic’.  The MDHG received municipal support, hired a mixed staff of drug users and non-users and ran an office, service and information centre around the corner of the main drug hotspot in Amsterdam. The key goals of the MDHG and other user-based organisations were human rights topics such as:

• Social acceptance of drugs and drug users themselves.
• The decriminalisation and regulation of illicit drugs.
• Fighting stigma and discrimination:  de-criminalise, de-medicate and fight the mental health stigma attached to the drug user.

In 1980, there were about fifteen local Junkie Unions throughout the Netherlands, with similar goals of influencing drug policy and providing services.  In those days, the Junkie Unions organised themselves as a federation:  Federation Netherlands Junkie Unions (FNJB).  This critically important role that they established was taken over in the 1990s by the LSD (Landelijk Steunpint Druggebruikers – a national support group of drug users), who supported local networks by organising national networks and advocacy meetings.

The AIDS epidemic certainly fuelled the development of self-help organisations and committed collaborations between drug users and agencies intended to assist them.

Similar developments emerged in many other parts of Europe:

• By 1994, such initiatives existed in at least 11 European countries (Germany, the Netherlands, the United Kingdom, Norway, Denmark, Slovenia, France, Belgium, Italy, Lithuania and Spain).
• In Scandinavia, the first organisations for active drug users were formed during the 1990s in Denmark and Norway, and in Sweden in the early 2000s.  In Finland, the first user-driven organisation was established in 2004. These drug user organisations were founded and run by heroin users.
• In France and Spain the first drug users’ organisations started in the 1990s.  Auto-support parmi les Usagers de Drogues (ASUD) was created in France in 1992, followed by Spanish self-organisations on cannabis use.  In 2003, the first national network of injecting drug users’ organisations was created in Spain — the Spanish Nationwide Network of People Affected by Drugs and HIV.
• Following the fall of Berlin Wall and increasing drug use in many parts of central and eastern Europe, user initiatives developed over time. In 2004, there were around 41 initiatives in the region. (source: Eurasian Harm Reduction Network).

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The first manual on peer support

“In a prevention project for drug users based on the idea of peer education it is the task of the educator to teach other drug users the rules of safer use and safer sex.  Within the concept of peer support, strengthening and supporting natural processes of information sharing and mutual support is prevailing. The emphasis is more on community and equality.”
European Peer Support Manual, 1995

Franz Trautmann, Trimbos Institute, co-author first manual on Peer Support in 1995

Peer involvement in HIV prevention among injecting drug users was subject of the European Peer Support Project (EPSP), a project which began in 1993.
It was based on several European peer initiatives and became a source for many other new initiatives and collaborations. http://www.drugtext.org/library/articles/traut4.html
The focus of the EPSP was developing peer support as a means to reduce HIV risks among drug users in different EU Member States.  Its main aim was “to stimulate professional and voluntary drug services as well as inmates and drug user self-organisations to use peer support as part of a strategy to reduce drug use related harm.”

The concept of peer support was used by organisations and initiatives in various European countries including Germany, France, Italy and the Netherlands.  It was also developed for prison settings.  http://www.trimbos.org/products/risk-reduction-for-drug-users-in-prisons

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Published: 30 November 2011

Peer work in the drugs field

“The HIV/AIDS movement changed the perception of drug users from that of dysfunctional individuals requiring substantial medical and welfare interventions to individuals able to contribute in a meaningful way to the community. For many drug users involvement in HIV/AIDS was a seminal point in our development into drug user activists.”

Jude Byrne, drug user activist, chair person of INPUD, Australia

The advent of HIV and AIDS prompted many drug users to get organised and inform and support their community.  It often also triggered supportive agencies to work together with these peer initiatives.

HIV/AIDS prevention was one of the first and main fields where drug users organised.  Users were actively consulted and/or involved in policies and services.

The first examples of HIV prevention work among drug users was mainly focused on how to prevent infection and, in general, concentrated on what people should not do.  But there was no information on how to achieve this, nor on alternatives to what could be done.

Prevention information in the early days lacked alternatives, particularly because health educators and services were mainly interested in abstinence and had very limited information on what people actually did and what their lives looked like (their friendships, sharing drugs and sometimes drug consumption equipment, and their rituals and habits such as how to judge the purity and quality of a drug, how to chase, how to inject and how to use drugs more safely).

What information do drug users share? People who share a similar habit or lifestyle - like drug taking - share experiences.  Just like others who have other common interests, (like organic gardening, reggae music, etc.), they share their experiences and information on specific drugs, quality, purity, effects, the high and potential side-effects.

While the first primary prevention responses were initiated by agencies, the concepts of community-based outreach and peer work became important intervention tools to reach, inform and support community members to protect their health.  For drug users, protecting one’s health, especially in the case of HIV or viral hepatitis (HBV/HCV), primary and secondary prevention became a matter of highest priority.

Effective HIV prevention and health promotion campaigns really started up at the moment when drug users and services, and peers and professionals started to collaborate:

• by learning from and talking to each other
• by educating professionals on drugs, drug-using practices and rituals
• by adapting health promotion information messages to users’ daily reality
• and by informing and supporting peers to implement these health promotion messages.

That was the real beginning of a genuine peer involvement in the drugs field.

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Peer work in HIV prevention

One of the main areas of peer work is in the HIV/AIDS field.  Use of peer work in this realm stands out because of the huge number of examples of its recent use in the public health field:  peer work is used in HIV prevention programmes and reproductive health all over the globe, especially among young people.

Although harm reduction has become widely accepted as an approach to preventing the transmission of blood borne infections, drug users continue to be excluded from policy debates and program implementation, in contrast to consumers of traditional AIDS prevention programs.

Jason Farrell, AIDS activist and harm reduction consultant, United States/The Netherlands

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Published: 30 November 2011

Peer work in the health field

Today, various forms of peer programmes are widely used in health programmes all over the world, in many areas of public health including nutrition, family planning, substance use (from tobacco and alcohol use to illicit drugs) and violence prevention.

Peer work fits well in the concept of public health as developed over the 1970s and marked by the Ottawa Charter: http://www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf.

• health is more than individual health risks and disease prevention
• health is about wellbeing and quality of life
• health is a resource and not a end goal in itself
• health promotion includes social and environmental determinants that influence personal and collective health.

Peer work embraces many of the elements that co-influence health (such as societal norms and environmental barriers to good health), and fits very well into a comprehensive, holistic concept of health.

Within the context of health education:

• Peers are recruited to educate their friends on specific health issues.
• Peer community members are selected and trained to undertake informal or organised educational activities with their peers (those similar to themselves in age, gender, background, risk behaviours, or interests).
• The activities are aimed at developing young people’s knowledge, attitudes, beliefs and skills and at enabling them to be responsible for, and to protect their own health.
• The objectives are often to reinforce positive behaviours or to minimise or eliminate risky behaviours in a target group.

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Published: 30 November 2011

Peer work started in education

Peer work started in schools with ‘peer tutoring’, with pupils educating other pupils.  This idea of involving peers in education was developed in the 1950s, in the United States.  It continued to develop, with more training, guidance and practical helping in learning, until it became a significant method for providing health advice (for instance on alcohol and tobacco) at schools.  The pupils who were recruited as peer educators used the classroom setting to educate their peers.

The use of peers in education was used to disseminate information, but was a method of one-way communication, in which peers were merely the messengers of the teachers’ message.  The peer educators, selected for their role-modelling capacity, could be considered the ‘good ones’ who were trained to educate the ‘bad ones’.

Nowadays, peers are also often used in social marketing.  More and more agencies in the social and cultural field (e.g. museums and charity organisations) use peers (on a voluntary or contractual basis) to widen their audience.

Another area where peers are used is in corporate marketing.  Companies use ‘peer power’ by hiring peers to penetrate new target groups and to recruit new customers.