Final Draft Meeting Report:

Data-collection at Low-threshold services for Drug Users:

Tools, Quality and Coverage, Lisbon, 9-10 December 2004

8 March 2005

Dagmar Hedrich, project manager

Meeting Participants, EMCDDA staff, Reitox Community. See further project info at: http://www.emcdda.eu.int/?nNodeID=5778

1 Final Draft Report Meeting 9–10 December 2004, Lisbon

1. Introduction

1.1 The meeting was held at the EMCDDA premises in Avenida Almirante Reis in Lisbon on 9 and 10 December 2004 and chaired by Dagmar Hedrich, project manager harm reduction in the EMCDDA programme ‘responses analysis’ – P2 (1).

1.2 It was attended by seventeen participants, including ten experts delegated by the National Focal Points of the Czech Republic, France, Hungary, Luxembourg, the Netherlands, Norway, Poland, Slovenia and the United Kingdom; a representative of the European Commission DG Sanco; a delegate from the Swiss Office for Harm Reduction and a representative of the EU-funded Correlation network project. Further participants from the side of the EMCDDA were the project managers Abigail David, Linda Montanari, and Lucas Wiessing and the programme coordinator (P2) Margareta Nilson,. Portugal and the European Red Cross / Red Crescent Network on HIV/AIDS and Tuberculosis (ERNA) were unable to attend the meeting (See list of participants in Annex III).

1.3 After a welcome to participants and a short tour-de-table, Dagmar Hedrich described background and objectives of the meeting. As part of its mission to provide objective, reliable and comparable information on the drug situation and on responses in its Member States, the EMCDDA collects data on interventions that aim at the prevention and the reduction of health-related harm among drug users. Strategies to curb morbidity and mortality among drug users are part of a comprehensive approach to drug demand reduction at EU level and included in EU drug strategies (2) and a EU Council Recommendation (3).

1.4 The meeting addresses data-collection on interventions to reduce health-related harm which are delivered in low-threshold (4) settings. The collection of data on services use and users plays a role for managing low- threshold harm reduction services, maintaining highest service quality and for assessing their effectiveness with regard to disease prevention and health promotion. Data on the level of service delivery and on the coverage of the target population are needed to better understand trends in drug use or risk behaviour and make thus an important contribution for the assessment of the level of (local) implementation of national and European strategies.

1 The EMCDDA website contains further information on this project in the harm reduction project area: http://www.emcdda.eu.int/? nNodeID=5778 2 EU Action Plan and Drug Strategy 2000-2004 as well as the new EU Drugs Strategy 2005 – 2012 with their accompanying Action Plans address the reduction of drug-related harms to health and society. The new EU Drugs Strategy (CORDROGUE 80) is online at the following address: http://register.consilium.eu.int/servlet/driver? lang=EN&ssf=DATE_DOCUMENT+DESC&fc=REGAISEN&srm=25&md=400&typ=Simple&cmsid=638&ff_TITRE=drugs+strategy&ff_FT_ TEXT=&ff_SOUS_COTE_MATIERE=&dd_DATE_REUNION=&rc=1&nr=32&page=Detail 3 Council Recommendation of 18 June 2003 on the prevention and reduction of health-related harm associated with drug dependence was published in the Official Journal in July 2003: OJ L 165, 03/07/2003, p.31 and is online at the following address: http://europa.eu.int/smartapi/cgi/sga_doc?smartapi!celexapi!prod!CELEXnumdoc&lg=EN&numdoc=32003H0488&model=guichett 4 The term ‘low-threshold’ describes an implementation setting that facilitates drug users’ access to service delivery through social and health agencies. To lower the threshold of access, such agencies have chosen specific locations and opening hours. Services are also delivered through outreach work. The use of the agencies’ services requires little bureaucracy, often no payment, and is not linked to an obligation of the client to be or to become drug-free. They target current users, ‘hard-to-reach’ groups, high-risk groups among drug users and experimental users (incl. services delivered in party settings). Typically this setting applies to street agencies, drop-in day-centres, field nursing stations and emergency accommodation. Within a comprehensive system of care, such agencies have - due to their easy accessibility - the role and potential to reach populations of drug users that are not in contact with other services. Besides treatment motivation and referral, they can play an important role for the delivery of “survival-oriented” services to problem drug users, like shelter, sterile injecting equipment and medical care. They are core settings for disseminating health promotion messages and increasing safer use information and skills among those who use drugs either experimentally or in a dependent or problematic way. They increasingly deliver treatment services as well. Final Draft Report Meeting 9-10 December, Lisbon

2. Objectives

2.1 The aim of the meeting is to obtain an overview of data-collection tools in use at low-threshold agencies and of the quality of the resulting data at national level, including their usefulness to describe service provision, service-mix, utilisation and coverage of target populations as well as geographical availability of services to prevent and to reduce health-related harm.

2.2 The specific objectives are:

. To get an overview of monitoring concepts and methods that are used at agencies that address current drug users and to collect a representative sample of monitoring tools used in such facilities; . To assess the relevance and usefulness of these methods and tools for the European level; . To examine the possibilities for cooperation and partnership with other players and establish a basis for complementary and synergistic action; and . To start discussions on ways to obtain more reliable and comparable data from low-threshold agencies.

2.3 The agenda is attached (see Annex II).

3. Overview of available information

3.1 Participants summarised their national situation with regard to monitoring requirements, tools used and quality of collected data and obstacles to data collection. Presentations were based on replies to a number of questions to describe the national situation with regard to monitoring low-threshold services (see Box 1 below). The resulting reports on the national situation were circulated beforehand, together with selected monitoring- tools to facilitate discussions during the meeting. Results are summarised in table form in Annex I of this report. The full country reports are available in a separate compilation (5).

Box 1. List of questions to participating experts

Participants were asked to respond to the following questions about the national situation:

1. Is there a formal monitoring requirement for low-threshold services in your country? 2. How do low-threshold agencies monitor their service delivery? 3. Which monitoring tools (or in a wider sense: quality-management tools) are in use? Please provide examples / send or bring to meeting. 4. Is there a core data set that many/all agencies collect for internal documentation? 5. Which data are reported to funding bodies and in which intervals (information flow)? 6. Is the quality of data satisfactory? 7. Are there any obstacles to monitoring service delivery at low-threshold agencies in your country?

3.2 Janusz Sieroslawski reported that in Poland the general level of monitoring must be described as ‘poor’ and highlighted that it is still largely unknown, how many services are active in the area of harm reduction across the country. The national documentation system covers only those harm reduction programmes (out-

5 Country Situation Reports plus selected data-collection tools from eleven European countries have been compiled as background document for the meeting on “Data-collection at low-threshold services for drug users – tools, quality and coverage”, Lisbon 9 – 10 December 2004. Copies of the document are available upon request from [email protected]. 3 Final Draft Report Meeting 9-10 December, Lisbon

patient facilities, shelters and streetwork activities) and prevention programmes in recreational (party) settings that are funded by the government and have been contracted to fulfil specific tasks. Quarter-yearly reporting is based on the contact tasks and oriented towards financial accountability. Some information about size and drug use profiles of the target population is included. The documentation of service delivery covers a the agreed targets and a range of standardised activities. A yearly questionnaire directed at local and regional authorities aims at identifying newly created substitution treatment programmes and other harm reduction programmes.

3.3 Randi Erik stated that in Norway, harm reduction was practically introduced in 1988, when the needle exchange van started to operate in Oslo. It has since then gained increasing acceptance as an important part of responses to drug problems within a comprehensive system of services. There is no national monitoring system, but data-collection in Oslo (where 50% of Norwegian problem drug users are estimated to be located) is thorough: clients in low-threshold care have to complete a client monitoring form, and a number of surveys is conducted. The extensive system includes: repeated structured, qualitative interview studies (since 1992); two annual surveys of client satisfaction at low-threshold services; and studies about risk behaviour (recently on HCV). Low- threshold services (‘field health care stations’) in Oslo document the number of consultations but not the total number of different clients; needle and syringe programmes (NSPs) document number and gender of clients, and number of materials given out. Client and service use data are not linked; and only aggregated data are provided to funding bodies and researchers. The Oslo municipal drug and alcohol services use a quality management system. In sum, there are a lot of data, many are un-used, and the question is what kind of data we are missing?

3.4 Abdalla Toufik from the French Focal Point said that in France harm reduction activities started relatively late. Even though syringe sale was regularised in 1987, needle and syringe programmes (NSPs) began only in 1992. However, a rapid increase in the number of services has then taken place over the 1990s and nowadays there are 150 NSPs and drop-in centres in the country. A main drawback to monitoring these services was that many had had no funding security beyond periods of one year and that the funding provided was insufficient to carry out systematic and serious monitoring. The Ministry of Health will introduce soon (2005 and beginning of 2006) a more stable three-year funding rule, which also will make it possible to establish an official monitoring obligation for the services. The system is composed by three elements: firstly, a short, yearly ‘activity report’ has to be submitted by all services. Secondly, in-depth information on client variables incl. on risk behaviour is gained through the study of 1000 clients at the eleven sites of the TREND study in France (TREND = Tendances récentes et nouvelles drogues - a study of drug use and new trends in urban and party-settings, using a variety of information sources including ethnographic observations and qualitative surveys. It has been conducted by the OFDT since 2001 in 13 French cities/sites). Thirdly, the French Focal Point is in charge of developing the protocol for a full client survey that will be conducted during one week or one month in all services across France. It will be a 2-page questionnaire and based on the treatment demand indicator protocol (TDI). He expressed the willingness of the French Focal Point to include a European data set, if such a data set became available in time as a result of this EMCDDA activity.

3.5 Gail Eaton reported for the UK that there is currently no national surveillance of low-threshold services, incl. needle exchanges. The main information provided by services purely responds to the requests of local funding bodies for financial accountability and performance monitoring. Monitoring is not seen as a need of the service itself nor as a means to improve the management process and deliver better services. And even though in some regions a considerable amount of data is collected for documentation and even for epidemiological research purposes, this is unfortunately in general not the case. In principle, every service designs their own

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monitoring system. She underlines that the resistance of staff to service monitoring is a major obstacle. She addresses the issue of terminology and suggests that services described as “low-threshold services” should be defined as those that are easily accessible and not (or not primarily) treatment-oriented.

A national audit of needle exchange services is currently underway in England, based on the need to assess the extent of, or changes in, provision and uptake of needle exchange services. This was proposed in the Hepatitis C Action Plan for England.

3.6 Franz Trautmann said that in the Netherlands, monitoring is poor or non-existent, except for the system of the salvation army (CLEVER) and in drug consumption rooms. There is a conflict between maintaining accessibility of services and levels of monitoring. As the main aim of the services is to establish a first contact with drug users, they risk their success if too many questions are asked. Data-collection can easily become dominant, too visible or too intrusive, and trigger the resistance of clients and staff. Research and evaluation purposes are not shared by staff; it is perceived as a waste of time. Services have their developed ‘own system’ to fulfil reporting requirements but there is overlap. He recommends to develop a tool for service/intervention- based monitoring that also includes client information. Concerning the terminology: Not all harm reduction services are low-threshold services whereas low-threshold services are generally harm reduction services.

3.7 Alain Origer informed that in 1998, the government of Luxembourg had defined the relationship between the state and the drugs agencies and had introduced a legal obligation to report a data set defined by the Ministry. Thus, standard activity statistics are compiled daily by all agencies. Client data are collected using a protocol that is based on the TDI, but constitutes a ’light’ (or now also ‘ultra-light’) version of it. The Focal Point is in charge of providing the standard protocols, of collecting them through the national monitoring system RELIS, and of processing the data for reports to be delivered to the Government twice per year. Through RELIS; the agencies have access to their own and other collected data and receive regular feedback. Service quality assurance takes place through thematic working groups (‘plate-forms’). Concerning the terminology: the term ‘harm reduction’ services should be used, because ‘low-threshold’ describes a setting. Harm reduction services are those that target problem drug users and treatment-reluctant groups. A methodological issue to be addressed is how to avoid double-counting, if service users have full anonymity.

3.8 Ines Kvaternik Jenko from Slovenia explained that data collection from the national network of treatment services (part of the national network of services of the Public Health Institute, where the NFP is located) was established already in 1991 and functions well. Monitoring of the seven NGO-run harm reduction services is however unsatisfactory because no comparable data are being delivered and no reliable data on the number of clients are available. Data-collection tools used by the NGOs are kept confidential, but reports include data on the number of client visits, needles and syringes, counselling and safer use training sessions. Data on individual service users are collected, using a ID-code, but there are doubts if double-counting is avoided. (Based on these data, NGOs state that 70% of their clients are not reached by the public health care system.) In the preparation for this meeting, the Slovenian Focal Point had held a meeting in order to strengthen cooperation with the NGOs. Together with the Institute of Public Health, two NGOs are partners of the Correlation project (see below) and among the tasks of the network is the development of a basic data- reporting system. The EMCDDA working group is seen as a welcome opportunity to define objectives and minimum requirements for data collection from low-threshold services for the European level.

3.9 Jan Visser, representative of the Correlation network (European network for health and social inclusion) funded by DG/Sanco of the European Commission from 2005 to 2007, presents the background and objectives of the network. The project's aim is to foster the development of intervention methodology for a broad spectrum

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of harm reduction projects working with marginalized persons and persons in risk situations. The project is coordinated by Eberhard Schatz from AMOC in Amsterdam, who has in the past been managing the AC- company project (see EDDRA Database http://eddra.emcdda.eu.int/eddra/plsql/showQuest?Prog_ID=3074 and www.ac-company.org). This project and two other international projects on male and female prostitution (www.enmp.org; www.europap.net) are the 'founding fathers' of the Correlation project, which has more than 60 partners from 25 European countries. The workplan of the project includes: networking and mapping of services, exchange of good practice, skills, methodologies and tools, setting up a centre of expertise. Over the three years of the project implementation, a number of concrete actions are planned, each coordinated by a subgroup of partners. One of those actions is the development of a ‘basic report data system’ for low-threshold services in order to stimulate the production of systematic and comparable data, to record data on services and clients which can be used for self-evaluation and for scientific evaluation of effectiveness and efficiency of interventions. The development of the tool will be supported by the following partners: the Research Institute on Drug Studies (RIDS) with main researchers Dr Jozsef Racz and Ferenc Márványkövi, at Eotvos Lorand University, Budapest (database methodology), the Departament de Sanitat, Barcelona (assisting research), the Institute for Public Health of Slovenia (development of the tool), the NGO ‘Aids Foundation Robert’ from Slovenia (practice test). As a member of the advisory committee of the Correlation project, the EMCDDA has accepted a coordinating role for this specific task. Further information on the Correlation network is available in a separate document. Jan Visser alerts the meeting to the cultural dimension of data collection and underlines the fact that the network comprises a wide range of partners, working with diverse target groups, for which a feasible monitoring/reporting tool is required.

3.10 Ferenc Márványkövi reported that in Hungary the unclear definition of ‘low-threshold service’ is still a problem; there is in fact a discrepancy between the definitions used by the Ministry of Health and the Ministry of Youth and Sports. In principle, the low-threshold services are those that focus on the prevention and reduction of health-related harm associated with drug dependence, but according to a survey conducted in 2003, many of the 40 services that claim to be ‘low-threshold’, don’t have the necessary staff and skills for providing harm reduction services, and do not accept clients that are current drug users. The survey used an item list derived from reporting requirements towards the EMCDDA and responses from 11 agencies were collected. The lack of funding and the irregular funding of this type of response is furthermore a major reason for lack of good quality data. Due to fear of confiscation of their data by police, agencies would not collect personal data for client profiles.

3.11 Karen Klaue informed the meeting that there were nowadays 300 low-threshold services in Switzerland, including drop-in centres, outreach projects, shelters, job and employment agencies, specific services for women and services targeting drug users with small children. Data sets used for monitoring service delivery include many common core-data, but are not directly comparable. Funding is mainly local and there is no nationally unified data collection. She raises a number of issues for the discussion: the often paradox situation of calls for higher quality-data while funding is lacking; how to quantify the core-activity at these services, the interpersonal and relationship work of staff with drug users is a further issue that needs to be addressed, if service delivery is to be fully documented. The starting point for all data collection should be to clearly define its purpose. The utility of the data, and the possibilities to analyse them is seldom questioned, however, there are quite a number of data-cemeteries. The cost/benefit of data collection needs to be evaluated in the present context of budgetary restrictions.

3.12 Blanca Korcisova reported that in the Czech Republic ‘low-threshold services’ are defined as those that establish a first contact with drug users, and try to reach the ‘hard to reach’. There are 90 such services currently operating in the country and 70 (75%) of them have adopted the voluntary use of a standardised

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“system for uniform data collection in low-threshold facilities”, developed and launched by a national NGO umbrella organisation in 1999. The system uses a personal identifier that safeguards the anonymity of the client but allows client-based documentation. It consists of an ‘in-come’ questionnaire for clients and daily activity reports for the services, and is supported by handbooks and guidelines, and since 2002 also available as computer software “Freebase” that also allows services to produce their own statistics. Since 2004, the Czech National Focal Point is in charge of funding, administrating and supervising the low threshold data-collection, which also includes the respective training. Even though the system is voluntary, it is widely accepted and used. In few cases however, agencies have voiced concerns about the confidentiality of the client information.

4. The Council Recommendation of 18 June 2003

4.1 Natacha Grenier (DG Sanco) presented the EU Council Recommendation of 18 June 2003 on the prevention and reduction of health-related harm associated with drug dependence (2003/488/EC – see footnote 3), which highlights the relevance for public health at the wider European Union level of interventions to reduce infectious diseases and deaths among drug users. In its first Recommendation in the field of public health concerning drugs, the Council recommends:

4.2 Member States should, in order to provide for a high level of health protection, set as a public health objective the prevention of drug dependence and the reduction of related risks, and develop and implement comprehensive strategies accordingly;

4.3 Member States should, in order to reduce substantially the incidence of drug-related health damage (such as HIV, hepatitis B and C and tuberculosis) and the number of drug-related deaths, make available, as an integral part of their overall drug prevention and treatment policies, a range of different services and facilities, particularly aiming at risk reduction; bearing in mind the general objective, in the first place, to prevent drug abuse;

4.4 Member States should consider a specified list of actions, in order to develop appropriate evaluation to increase the effectiveness and efficiency of drug prevention and the reduction of drug-related health risks.

4.5 The Recommendation also specifies that Member States should report on its implementation. The EMCDDA will provide technical support to the Commission to prepare a report with a view to revising and updating of the Recommendation on the basis of the latest scientific data and advice. The Commission decided to contract a body/company to get a preparatory work. A call for tender was launched on 10/07/04 with a deadline for submission on 03/09/2004. Results are now available at http://europa.eu.int/comm/health/ph_programme/howtoapply/call_112486_2004.htm.

5. Related EMCDDA work

5.1 Linda Montanari, project manager for the treatment demand indicator (TDI) at the EMCDDA programme ‘situation analysis’ - P1, provided an overview of the status quo of implementation of the TDI protocol at low- threshold agencies. This EMCDDA indicator is based on a Standard protocol of 20 variables and aims to provide comparable, reliable and anonymous information on the number of people treated for their drug use, the characteristics and profile of clients and their drug use patterns. The variables are composed of a) treatment contact details (type of treatment centre, time of treatment, source of referral) b) socio-demographic

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information on client (gender, age, living and labour status, education, nationality) and c) drug use-related information (primary and secondary drug, substitution treatment, route of administration, frequency of use, age at first use).

5.2 Low-threshold services are one of five types of ‘treatment centres’ covered. Even though the TDI Standard Protocol specifies that “programmes exclusively concerned with making syringes available or disseminating information should generally not be considered as treatment centres. (…)” it then describes the specific characteristics of such services and the circumstances under which these may be included. It concludes by suggesting that the best compromise “may be to collect only very basic data from these projects” (TDI Standard Protocol, p.18). In 2003, one third of EMCDDA member states and applicant countries (9 of 29) had provided information from low-threshold agencies, but efforts were made to improve coverage. The comparison of the profiles of 6109 clients treated in low-threshold and in outpatient drug treatment centres in 4 countries in 2000 which Linda Montanari also presented showed some of the potential of the TDI for future analysis (presentation available as ppt.-file).

5.3 Lucas Wiessing, project manager of the key-indicators ‘Infectious diseases’ and ‘problem drug use’ (PDU) at the EMCDDA programme ‘situation analysis’ – P1, informed the meeting on the recent initiatives within the EMCDDA expert networks. As part of the infectious diseases indicator data on hepatitis B/C and HIV prevalence among injecting drug users are collected from a list of settings that include low-threshold services. Data are collected using a common reporting format (standard table 9) and are presented in the EMCDDA Annual Reports and in more detail in the online Statistical Bulletin. One of the recent initiatives being developed is to start monitoring risk behaviour (% sharing needles and other equipment). This and other initiatives will be incorporated in a more detailed protocol that is being developed for the infectious diseases indicator, as a follow-up to the current draft guidelines. For the problem drug use indicator the main interests are to obtain epidemiological data from low-threshold attendees on drug use patterns and information for calculating prevalence and incidence of PDU using methods such as multipliers and capture recapture. In the recent expert meeting on PDU a special session was devoted to low-threshold services, where it was also discussed whether a routine or survey approach would be the most suited for such data collection. The reports of the expert meetings are available on request.

5.4 Dagmar Hedrich gave a brief overview of the framework of EMCDDA data collection on harm reduction interventions (presentation available as ppt file) see http://www.emcdda.eu.int/?nNodeID=4823. In the past couple of years, focus has been on developing data-collection tools for the areas prevention of infectious diseases (see under “related documents” at http://www.emcdda.eu.int/?nNodeID=5777) and on reduction of acute drug-related deaths (see http://www.emcdda.eu.int/?nnodeid=1333). First experiences with the use of the new instrument were currently being collected, showing a need for further harmonization of data sets at the level of drugs agencies. She underlined that there was a common interest of the EMCDDA programmes on ‘situation analysis’ and ‘responses analysis’ in the area and the meeting was a joint effort to obtain more complete and more relevant data on service use and users at low-threshold agencies for an European analysis. While work of P1 - ‘situation analysis’ was oriented to obtaining better data for improved estimates of the prevalence of infectious diseases, problem drug use and demand for treatment, the interest of P2 – ‘responses analysis’ was to obtain further relevant data on availability of services and facilities, on their geographical coverage (% of territory covered), on service-mix, on levels of utilization and of coverage of the target populations with specific harm reduction services – practically to obtain a harm reduction service indicator. Where feasible, achieved standards (e.g. TDI) should be combined with new initiatives to improve data- collection at low-threshold harm reduction services.

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6. Issues raised in the discussions

6.1 Terminology must be clarified The use of the term ‘low-threshold’ was unclear. In principle, it describes an implementation setting; however, in some countries, the term is used to describe ‘harm reduction services’ because it is politically less controversial. Further clarification is needed at the next meeting.

6.2 European and national level monitoring should ideally correspond The work of the EMCDDA aims at making a contribution to monitoring the level of implementation of EU instruments, namely the targets set in the EU Drugs Strategy and Action Plans and the Recommendations made in the Council Recommendation of 18 June 2003. To this end, it is necessary to improve the quality of information on the availability of a number of specific interventions, their utilisation, geographical coverage and in how far target populations are reached. Even though these data are required at European level, they should also be relevant for national and local level.

6.3 Monitoring objectives must be transparent Currently, the main purpose of data-collection at low-threshold services appears to be reporting towards service-funders to account for the funding recevied, who very often are the local (health) authorities. It seems that service evaluation and internal quality management play less a role and that data collection for epidemiological research purposes is rare and often sporadic. Besides (local) financial accountability, data on the use and users of low-threshold harm reduction services could be useful for comparing, documenting performance, supporting fundraising; assessing service needs and developing new interventions; tracking emerging trends in drug use and risk behaviour - at national and European level. To achieve complementarity and to reduce contradictions in the objectives of data collection at local, national and EU level, the intended use of data must be well defined and transparent.

6.4 There is no need to ‘re-invent the wheel’ Examples of tools presented at the meeting showed that services conduct at least some “low-level monitoring” of service delivery. The tools that have been developed show many similarities between countries even though drugs services seem to do it “their own way” and there were few examples of ‘national’ tools (Luxembourg, Czech Republic). The main challenge is to standardise data-collection at low-threshold harm reduction services: to define the terminology, to provide clear guidelines and training. It was suggested to develop standard data collection modules that can be combined, according to which services are available.

6.5 Data collection must be adapted to work conditions and respect unique features of setting A key-feature of low-threshold service provision is that clients are not faced with a large ‘bureaucracy’ before/while using the facilities and services. This means that no detailed client data are collected – and often also that no data on individual service users are collected but only on the number of client ‘contacts’. To determine the level of coverage of a target population with a specific service (e.g. needle and syringe programmes) data on unique service users would however be needed. A unique identification code needs to be applied through which double counting can be avoided. Different methods to define such an identifier have been discussed in the context of the TDI protocol (TDI Standard Protocol, p. 21; Origer, 1996). There is a need to discuss further if and how this could be implemented under low-threshold conditions.

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6.6 A combination of methodologies might be needed Routine monitoring of service use and users in low-threshold settings will need to be restricted to a small or very small number of variables (e.g. TDI ‘ultralight’ in Luxembourg), but additional methods can be applied to gain more information. E.g. surveys on client profiles, patterns of service use, risk behaviour or client ‘knowledge, attitudes and believes’ (KAB). While it appears useful to identify ‘standard tools’ for these purposes at European level, the overall cost/effectiveness of surveys and regular monitoring systems must be analysed when proposing a model or combination.

6.7 Crucial role of staff in data collection There seem to be significant cultural differences within Europe in the extent to which monitoring and other data collection is perceived as ‘acceptable’ or ‘normal’. Some countries report that staff willingly or unwillingly boycott data collection – especially when there is a lack of training and of transparency (information and understanding of the purpose of data-collection). This can be reduced by providing feedback on the results to the agencies and the staff. Data processing routines exist that facilitate feedback to services and increase the involvement and support by staff.

7. Main meeting results

7.1 For an adequate monitoring of the implementation of European Union Drugs Strategies and related Action Plans, and of the EU Council Recommendation of 18 June 2003, reliable data from Member States on the provision, utilisation and geographical coverage of services to prevent and reduce health-related harm associated with drug dependence are needed.

7.2 Monitoring tools applied in the ten participating European countries showed similarities but formats are rarely harmonised. Data-collection largely serves funders’ demands and needs and local funding is predominant. Sometimes a vast amount of data are collected but not used (data-cemeteries).

7.3 Experts identified a need for: - more harmonised data collection; - realistic expectations towards data collection in this area, because of very heterogeneous and diverse services; service-based monitoring routines must be limited to remain feasible; - data collection must respect the specific work conditions at low-threshold agencies; - transparency about the objectives and adequate feedback of results to services/staff to improve compliance with data collection; - a modular approach to data-collection and not one standard form that fits all purposes is the way forward; - examination of the cost-effectiveness of monitoring / the use of additional surveys.

7.4 There are indications that monitoring for the purpose of service management and evaluation (quality management) has become more common in the past years and seems also to emerge as an interest of services themselves. The development of information technology makes it nowadays more easy to enter and process data and it opens new ways of providing rapid, tailor-made and thus more useful feedback to services.

7.5 As low-threshold harm reduction services have become an integrated part of a comprehensive demand reduction approach, their funding has become more stable and long-term, which also helps to introduce more harmonised reporting through the funding agreements.

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8. Follow-up

8.1 The work of the expert group will be continued in 2005 with the following mandate:

8.2 - to give advice on the further development of monitoring tools for activities related to the prevention and reduction of health-related harm associated with drug dependence implemented at low-threshold agencies and to address the issues identified under number 6. during an expert meeting(6); 8.3 - to provide feedback on a ‘basic report data system’ for low-threshold services that will be developed by the Correlation network. The EMCDDA as a member of the advisory committee of the network ensures that there is no duplication of work.

8.4 A mapping exercise on current availability and quality of data from low-threshold harm reduction services, based on information available through EMCDDA data collection and an analysis of overlap in reporting categories will be carried out by the EMCDDA as a preparation for the next meeting.

6 The EMCDDA has allocated funding for one small meeting in 2005; the proposed date is 2-3 June 2005. 12 Final Draft Report Meeting 9-10 December, Lisbon

Annex I: A first overview of data-collection low-threshold harm reduction services

Country Formal monitoring Current practice of monitoring, tools, Quality Obstacles to monitoring Level of involvement requirement nat. level intervals, core-data assessment of Nat.Focal Point CZ Yes, for services funded 75% of services use standardised Satisfactory Fears at some agencies that anonymity NFP in charge of from national budgets documentation system Freebase. All of clients is not guaranteed funding, administration provide number of visits and of services and supervision of delivered; increasingly services provide monitoring system, incl. client-based information. Yearly reporting Freebase training common. FR Planned. MoH Decree Yearly activity reports to respective funding Unknown / not No standardised tool (including easy to NFP together with DG for re-organisation of low- bodies. No systematic monitoring but only comparable. use computer programme); lack of Santé in charge of threshold services basic data on visits, syringes, condoms. training among staff; specific conditions developing the new (CAARUD) under Larger services developed their own tools at the services that make data reporting routine low- preparation; reporting for client surveys. collection difficult or impossible threshold services obligation to be (anonymity, working conditions). introduced HU Yes, a survey by the NFP No formal core-data set. Variables are Not satisfactory Definition NFP develops the determined by Hungarian Psychiatric Anonymity instrument for survey of Association: client profile & ID/ number of Lack of resources and training agencies visits and of services delivered LU Yes, the law of 8/9/1998 National drug care agencies accredited Sufficient for The setting itself as duration of contacts NFP provides all and funded by MoH provide daily statistics accountability often too short to guarantee agencies in contact with according to RELIS on number of clients, reporting; valid representative and reliable data problem drug users nationality, gender, syringes in-out. Twice evaluation data collection. with standardised data per year reports to MoH. scarce Double counting difficult to avoid collection protocols NL No Salvation Army runs a national client Not satisfactory Lack of training (no information) monitoring system that includes client Low-threshold / harm reduction setting identifiers. Other agencies do not monitor itself that does not allow structured data systematically. Every service does it ‘in collection; their own way’. Contradiction service accessibility – client-based monitoring

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Country Formal monitoring Current practice of monitoring, tools, Quality Obstacles to monitoring Level of involvement requirement nat. level intervals, core-data assessment of Nat.Focal Point PO Yes, for all harm reduction Quarterly reporting oriented towards Not satisfactory Reluctance of staff to report NFP designs services funded by performance / tasks contacted, plus target Data-collection as ‘burden’ instrument for quarterly National Bureau for Drug population and activity-based reporting Client data seen as breaking anonymity reporting Prevention (NFP); total (number of services), but low level of number of services standardisation unknown PT Yes, for all low-threshold Monthly compiled statistics by all services; Quite satisfactory Lack of training (guidelines, standards, NFP in charge of services funded by IDT field-diary, team meetings and additional definitions) design of standard (NFP) standard protocols supervision protocol for client- and activity based reporting exist SI Planned according to new Daily reporting at agency; contacts and Sufficient Lack of regulation that provides for NFP planned to be in National Programme 2004- activities. Client-ID system is used to avoid client-based data collection; charge of designing 2009. Unit within Inst. double-counting. there remains a need for core-data set Public Health (NFP) shall Yearly reports to funding bodies MoH and complementary studies / surveys be in charge & local action Min Soc Affairs; sometimes include further groups (LAS) client data. UK No national system Information is provided to funding bodies to Not satisfactory for Maintaining anonymity of clients; (unknown) fulfil the needs for financial and national level; but providing easy access. performance monitoring – less for service some regions have management and research. very good data Exceptions: Interagency database Merseyside; Northern Ireland has standard monitoring tool for NSPs in pharmacies. England currently conducts a NSP audit. NO National client-based data Services developed their own tools; No info. about total Needs of accessibility and for (unknown) collection available in Municipal Services Oslo are a main individual clients, monitoring are difficult to reconcile shelters, but only in provider and have comprehensive data their profiles and aggregate form collection and quality management system service use patterns CH Few cantons have 2/3 of low-threshold agencies are 15% are certified by Anonymous access of clients in not applicable

14 Final Draft Report Meeting 9-10 December, Lisbon

Country Formal monitoring Current practice of monitoring, tools, Quality Obstacles to monitoring Level of involvement requirement nat. level intervals, core-data assessment of Nat.Focal Point introduced standard introducing quality management tools, external agency contradiction with formal, detailed monitoring (– any national mostly on own initiative. personal data collection system would be voluntary) Yearly activity reports contain: number of contacts/visits, clients, socio-demographic data, number/type of interventions; financial report.

15 Final Draft Report Meeting 9-10 Dec 2004, Lisbon

Annex II: Meeting Agenda

Thursday, 9 December 2004

9.15h – 9.30h Gathering of participants

9.30h – 10.00h Opening of meeting: Welcome and introduction of participants (Dagmar Hedrich, Project Manager EMCDDA)

10.00h – 13.15h Session 1 - Overview of available information

Round-table with input from experts on national situation with regard to tools used and quality of collected data (Country Representatives)

Discussion incl.: - Quality of data - Main obstacles - What are the data needs at local, national and European level? - Which conclusions (if any) can be drawn at national level with regard to the coverage of the target group with harm reduction services?

13.15h – 14.30h Lunchbreak

14.30h – 17.00h Session 2 - Coordination and Partnerships

- EU Council Recommendation of 18 June 2003 on reduction of health-related harm and call for tender DG/SANCO “Development of the inventory of activities related to the prevention and reduction of health-related harm associated with drug dependence” (Natacha Grenier, DG Sanco)

- EMCDDA TDI data collection from low-threshold services: overview status quo (Linda Montanari, EMCDDA)

- EMCDDA Key-indicator Infectious diseases: overview of data collection on risk behaviour (Lucas Wiessing, EMCDDA)

- Overview of EMCDDA data collection on harm reduction (Dagmar Hedrich)

- “Correlation Network – European Network for Health and Social Inclusion”, a DG/SANCO funded project 2005 – 2008 (Jan Visser, Amsterdam)

Discussion: Aiming at Synergy - Which co-operation possibilities and which needs for coordination do we have?

17.00h End of work for the day

16 Final Draft Report Meeting 9-10 Dec 2004, Lisbon

Friday, 10 December 2004

9.30h – 9.45h Wrap up from Thursday sessions, Dagmar Hedrich

9.45h – 11.45h Session 3 - Future Directions and Perspectives

Presentation of draft Work Plan for 2005 (Dagmar Hedrich)

Workplans / Timetables of Partners

General Discussion on joint action

Conclusions

11.45h Summing up meeting

12.00h Closure

17 Final Draft Report Meeting 9-10 Dec 2004, Lisbon

Annex III: Final List of Participants

Czech Republic Blanka Korcisova Office of the Government and Czech National Focal Point [email protected] Secretariat of the National Drug Commission Nabr. Edvarda Benese 4 CZ - 118 01 Praha 1 - Malá Strana T. +420 296 153 457 F. +420 296 153 264

France Abdalla Toufik Observatoire Français des Drogues et des Toxicomanies [email protected] 3 Avenue du Stade de France FR - 93200 Staint Denis Tel: 33 1 41 62 77 16 Fax: 33 1 41 62 77 00

Hungary Ferenc Márványkövi Institute for Psychology [email protected] Hungarian Academy of Sciences Victor Hugo utca 18-22. Hungary – 1132 Budapest Tel: +361 2796087 Fax: +361 2796087

Luxembourg Alain Origer Head of National Focal Point [email protected] Ministry of Health Villa Louvigny - Allée Marconi L - 2120 Luxembourg T. +352 478 56 25 F. +352 478 50563

Norway Randi Ervik Researcher [email protected] Rusmiddeletaten une.no Kommune Oslo ++ 47 23 42 79 40

Poland Janusz Sieroslawski Head of Polish National Focal Point [email protected] National Bureau for Drugs Prevention Dereniowa 52-54 PL - 02-776 Warsaw T. +48 22 641 15 01 F. +48 22 641 15 65

Portugal apologized

Slovenia Ines Kvaternik Jenko Institute for Public Health of the Republic of Slovenia

18 Final Draft Report Meeting 9-10 Dec 2004, Lisbon

[email protected] Trubarjeva 2 SI - 1000 Ljubljana T. 386 1 244 F. 386 1 244 15 36

United Kingdom Gail Eaton Department of Health [email protected] UK – London T. +44 207 F. +44 207 972 5662

The Netherlands Franz Trautmann Trimbos Institute [email protected] The Netherlands Institute of Mental Health and Addiction Da Costacade, 45 - P.0. Box 725 NL - 3500 AS Utrecht T. + 31 30 297 11 86 F. + 31 30 297 11 87

Femke Pijlman Trimbos Institute [email protected] Project manager: Evidence-based Library on Drug Addiction The Netherlands Institute of Mental Health and Addiction Da Costacade, 45 - P.0. Box 725 NL - 3500 AS Utrecht T. + 31 30 297 .....

Other Partners

Switzerland Karen Klaue Schweizerische Fachstelle für Schadenminderung [email protected] im Drogenbereich (FASD - BRR - URD) [email protected] (Swiss Office for Harm Reduction) http://www.fasd-brr-urd.ch/ cc. Regine Linder Rte des Arsenaux 9 [email protected] CH - 1700 Fribourg T. + 41 26 347 15 75 F. + 41 26 347 15 78

Correlation network Jan Visser Project Coordinator [email protected] AMOC/DHV Stadhouderskade 159 1074 BC Amsterdam, The Netherlands T. +31 F. +31

19 Final Draft Report Meeting 9-10 Dec 2004, Lisbon

ERNA – European Red Cross / Red Crescent network on HIV/AIDS and tuberculosis Apologized Dr Anders Milton President Dr Fabio Patruno Board Member www.erna.sk

DG/SANCO Natacha Grenier DG SANCO - Health and consumer protection [email protected] Jean Monet Building Luxembourg T. + 352 4301 38037 F. + 352 4301 34975

EMCDDA Mailing Address: Rua da Cruz de Santa Apol ónia, 23-25 1149-045 Lisbon - Portugal

Margareta Nilson T. +351 21 811 30 07 Head of P2 [email protected]

Sonia Vicente T. +351 21 811 3017 Assistant, P2 F. +351 21 813 79 43 [email protected]

Dagmar Hedrich T. +351 21 811 30 67 Project Manager, P2 [email protected]

Linda Montanari T. +351 21 811 30 81 Project Manager, P1 [email protected]

Abigail David T. + 351 21 8113094 Project Manager, P2 [email protected]

Lucas Wiessing [email protected] Project Manager, P1 T. 351 21 811 3016

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