Consumer Driven Program Development and Accountability

Consumer Driven Program Development and Accountability
by Jason Farrell

Jason Farrell - CEO of Harm Reduction Consulting Services, Inc. (HRCS) Netherlands 2006 - present
Founder and former executive director Positive Health Project, Inc NYC 1993 - 2006

With the growing interest and ethical need to recruit consumer involvement in participation with the design, implementation, evaluation and delivery of harm reduction services, today there is no better time for drug user organizations and consumer advocacy groups to enhance their organizational capacity to provide such services.

Currently, user organizations/consumer advocacy groups have gained opportunities to ensure representation and accountability in areas ranging from drug policy reform, HIV/AIDS prevention planning, funding decisions and the provision of quality services, whereby ensuring that mandated drug policies and services specifically funded for this population are clearly followed and provided. Over the years there has been a significant break through in having consumers/peers participating in the development of polices and services directly affecting their lives. Many public health professionals and international policy advisors acknowledge the fact that drug users/consumers possess skills and knowledge to effectively advocate for change in policy, in addition to informing their communities on the benefits of reducing risks associated with drug consumption.

However, aside from providing health promotion and drug policy advocacy, user organizations/consumer advocacy groups can serve a greater purpose nationally through partnerships with health departments and private foundations who fund harm reduction drug treatment, and HIV services by, for example, reviewing funding applications, conducting site visits to programs pending awards, facilitate consumer satisfaction focus groups and evaluations, and, perhaps most importantly, providing personal testimony regarding the provision of current funded services and policies/laws implemented to allegedly improve their lives.

Unlike ‘peer programs’ designed to involve members of a particular target group to deliver a range of direct services, health promotion, outreach, etc, to their peers, user organizations and/or consumer advocacy groups have historically been implemented to address social and policy issues directly affecting the lives of their members and/or constituency. This is not to say that many user organizations/consumer advocacy groups do not provide direct services for their members, many do so and have been very successful. To date, drug user or consumer run groups have been successful in making historical changes in local and national laws improving human rights of drug users, access to housing, HIV treatment, methadone treatment, and polices affecting their lives.

Advocacy for drug policy reform and services for drug users need to be checked regularly for accountability, adherence, as well as for the outcomes or effects of such policies and services. Clearly, a group that should be involved in such activities is members of the population these polices and services target - the consumers themselves. The provision of conducting such tasks (including advocacy and lobbying elected officials; developing evaluation tools; conducting focus groups, and trainings; reviewing funding applications; and conducting site visits to harm reduction programs and other organizations working with substance users pending award notification) may require initial financial support from the funders themselves.

To date, user organizations/consumer advocacy groups have not formally taken on the tasks of policy advisors nor have they sought unique funding opportunities through collaborations as hired evaluators or policy advisors. There needs to be a user organization/consumer advocacy group with the infrastructure, on a local or state-by-state level, ready and able to be called upon for such work. Ideally, it would be each state’s/cities user/consumer groups’ best interest to consider conducting such services for many reasons: first and foremost to ensure their involvement in developing policies that directly affect their lives; 2) when violations occur they are voiced, and there is a safe place to garner support to address issue/s; 3) to ensure effective and quality user-friendly services are provided; 4) to maintain accountability of harm reduction programs’ commitment to providing the services they claim to provide; 5) to keep funders and policy makers accountable to the policies and proposed services they fund; 6) to build relationships with funders and service providers in efforts of building an integrated care network; and 7) to gain funding for consumer advocacy groups by being sub-contracted to provide such services, thereby enhancing the services of the user/consumer group itself.

Theoretically, each state/city should have an identified user/consumer group that is available for sub-contracting with each local and national funder, harm reduction program, drug treatment program, drug user service or policy-related organization as an evaluator (or more so as a watchdog), ensuring that the programs remain accountable to the people they service and the funders who fund the services they claim to provide. User groups and consumer organizations can then negotiate with funders and harm reduction programs to be sub-contracted for a percentage of the organizations budget to perform such work. It is a win-win for all. In many cases funders require the target population to be involved in service development and to hire outside evaluators. The organization needs consumers inclusion to gain funding, and the consumer group benefits by gaining funds to enhance capacity due to being retained to provide needed services.

Some noteworthy harm reduction programs have policies/by-laws requiring user representation on the board of directors and in some cases, the chairperson of the user/participant advisory board or committee is a board member. This guarantees that the recommendations of the user/consumer advisory committee are brought to the attention to board members at board meetings and are then documented in the meetings minutes.

It goes without saying that policy advisors, donors - including the CDC and others like State and local health departments - should solicit and invest in user advisory boards to evaluate funding applications and to participate in policy reform advocacy. In addition to establishing internal user/consumer advisory boards, funders should reach out and partner with local user/consumer organizations to conduct policy advocacy and site visits to programs pending award notification. However, this will not occur without the infrastructure and capacity building support provided to user/consumer advocacy groups. Therefore, it is absolutely necessary for funders and health departments to financially support capacity building efforts within these groups.

This simple adaptation of mandating not only fiscal support, but the sub-contracting of drug users/consumers as evaluators, assuring the accountability of harm reduction and other substance use related programs, could have a huge impact on the implementation and on-going maintenance of effective services. It will ensure that programmatic and policy issues are dealt with in a timely and effective manner.

More info on Jason Farrell:

Jason Farrell is the founding executive director of Positive Health Project, Inc. (PHP), one of New York City’s first needle/syringe exchange programs (NSPs) for injecting drug users (IDUs) and substance users of all genders and sexual orientations living with, and/or at risk for HIV/STIs and viral hepatitis. PHP provided primary/secondary prevention, medical/substance use treatment and various support services, including science-based interventions to minimize risk behaviors.

During his tenure from 1993 to 2006, Mr. Farrell pioneered the development and provision of one-stop-shop integrated care whereby implementing the nations’ first medical/dental facility co-located within a NSP. PHP’s unique one-stop-shop integrated care has become a sought after service delivery model, currently described as ‘The Comprehensive Package’ in the WHO, UNODC, UNAIDS Technical Guide for Countries to Set Targets for Universal Access to HIV Prevention, Treatment and Care for Injecting Drug Users.

In 2006, Jason Farrell was presented with the Travis Jenkins Award at the 17th International Conference of Drug Related Harm. The Travis Jenkins Award is given to an individual who has made outstanding contributions to the provision and development of harm reduction programs, services and polices.

Presently Mr. Farrell lives in Amsterdam working as a consultant with various consumer advisory networks, government and non-government organizations (NGOs) located in Europe, Asia, Central Asia and the United States. Consulting services requested to date include capacity building support, technical assistance, operational protocols, guidelines and policy recommendations.