Growing Empowerment in Community Gardens

Growing Empowerment in Community Gardens
Six Steps for Social Mobilization to Stop TB in High Burden Countries
Rooted in Rights & Responsibilities, a methodology developed by people with TB and/or HIV

Almost two million people from our diverse communities die every year from tuberculosis, although a cure was found some sixty years ago. They are wasting away in the barren lands of poverty, suffering in the dark shadows, mostly unheard and unseen by those ‘on the top’. This tragedy is the responsibility of the member nations of the World Health Organization, who in spite of noble words and agreed targets, have not sufficiently protected their vulnerable populations against this preventable disease. Moreover, it is a clear indication of the failure of the affected communities to defend themselves by taking greater responsibility or mobilizing for their rights to quality care, mandated by the World Health Organization (WHO) and most national governments.

The World Care Council, an international NGO driven by people with TB and/or HIV, is rolling out a dynamic system of Social Mobilization, designed from the ground-up by those most affected by the diseases. Recognizing that the crisis of rising MDR/XDR, and TB/HIV coinfections are a global threat that most countries lack the needed drugs and diagnostic infrastructure to deal with, it is vital to immediately scale-up the participation of civil society as partners with health providers to improve prevention, detection, and treatment adherence, and to drive TB up the local, regional, national and international agenda.

A key element of the WHO Stop TB Strategy and Global Plan 2006-2015 calls for the Empowerment of People with TB and their Communities, and contains three components: Advocacy, Communication, Social Mobilization (ACSM); Community Care; and the Patients’ Charter for Tuberculosis Care. These components are closely related, and although essential in the fight against TB, TB-HIV and MDR/XDR TB, they have lacked an effective implementation plan in the high burden countries, precisely where it is needed. Mobilization ‘on the ground’ to improve the well-being of the community is best led by the people most affected, patients and their families, with local allies and partners. This is well-evidenced in the scale-up of HIV treatment and prevention in the last decade, yet it is completely absent in TB Control.

After two years of research and development, the World Care Council has produced a framework methodology for local adaptation that allows social mobilization to jump-start with immediate results. While this methodology is rooted in the Patients’ Charter for Tuberculosis Care, which outlines the Rights and Responsibilities of patients, providers, and the immediate community, it goes beyond being TB-only to include the other health concerns in the area including HIV, malaria, diabetes, asthma, malnutrition and other neglected diseases. It nurtures the partnerships needed for community mobilization while the locally designed monitoring and evaluation process will encourage accountability and further stakeholding or ownership of ‘Care’, at proximity.

Each local initiative is driven by people with TB and/or HIV, and will aim to substantially improve case detection and adherence through a fusion of needed social support, warm human outreach, and innovative communications. This process will set-up and build the capacity of Patients’ Peer Support Groups to not only help themselves to ‘cure’, but to also take a lead in advocating for increased resources for needed drugs, diagnostics and dignity. products delivered with empowerment. By conducting operational research through a one year pilot-project program, with technical assistance from start-up through scale-up, a model project will provide clear evidence that empowered patients and their communities, in mutually beneficial partnerships private enterprises and public services, can contribute substantially to meeting national health goals, from the bottom-up.

The following 6 steps outline the general organic process for cooperative gardening. In each community, they can be adapted to meet local needs and compliment existing programs and partners' activities. (*= Glossary)

1. Plowing and groundwork

Preparation
- Initiate and establish partnership with the key TB Care provider (FCOE*) in a defined local geographical area
- Identify general community in proximity to the FCOE and conduct local resource mapping study
- Meet and begin development of partnerships with providers, local civil society and private sector leaders
- Head-hunt: Seek and hire 2 ex-patients to initiate project as a team, with the ‘search’ an aspect of outreach
- Orient, train, equip and introduce the team to partners, and develop a database for communications
Framework Agreements and documents:
- Patients’ Charter for Tuberculosis Care* (PCTC) and GIPT* Principle (translated in local language)
- Draft terms of reference for Community Care Club* (CCC)
- Framework for Patients’ Peer Support Groups* at key TB Care provider (FCOE)
- Handbook on Implementation: Growing TB Care in Community Gardens
- Memorandum of Understanding (MOU) with local key TB Care provider (FCOE) and other key partners
- Partnership and sponsorship agreements with funders, national enterprises and local businesses
Operational research / Model-making:
- Agreement with local or regional operational research partner (Institutes such as TRC, MRC, AMREF, etc.)
- Establish baselines, including case detection, treatment adherence and set indicators for study
- Outreach for Input: design local Survey /Questionnaire with Community Care Club (CCC) info-pack
- Develop MARCOM CARE* advisory board to assist with marketing communications - 'selling' community care
- Agreement with leading media as partners in developing local ‘community correspondents’
- Letters of support of NTP and civil society partners, including the private sector and educational institutions
- Agreement with leading enterprises to sponsor macro-economic incentive program for CCC
- Conduct ‘Community Eyes & Ears Survey’ (production of baseline video clips) for input on local priorities
- Organize ‘Know Your Rights and Responsibilities’ Workshop on the Patients’ Charter for TB Care (PCTC)

2. Seeds in the ground

Research and development
- Conduct Outreach for Input Surveys in target area, and establish baselines for operational research
- Head-hunt core group of ex-patients, PLWHA, and local health ‘pros’ to start a Community Care Club
- ‘Head-build’ by finding experts, providers and program managers willing to mentor and advise
- Prepare a small space for a Drop-In Centre at key TB Care provider (FCOE) at specific times/days.
- Begin Peer Support Group Meetings at key TB Care provider (FCOE) and identify individual needs
Collaboration ‘On the Ground’
- Mobilize and organize first open meeting of Community Care Club, and start process of NGO formation
- Prepare materials for CCC membership with seek participation agreements with local enterprises
- Train, equip and prepare Mobilization Team planning and events at schools, markets, factories...
- Design outreach materials for Mobilization Mobile Unit*, a team and vehicle equipped for impact
- Secure local celebrities participation for campaign events for community care and mobilization.
- Hold ‘Know your Rights and Responsibilities’ Workshop to disseminate the Patients’ Charter for TB Care
- Conduct first IT Access 4 All* workshops at FCOE to increase patients use of new tools of information

3. Forge Gardening Tools

Social Mobilization
- Design (local module) of Community Care Club website and seek ongoing contributions from community
- Organize a pair of ‘embedded’ journalists (correspondents) to further amplify voices of those yet unheard
- Promote and launch Community Care Club with a broad-based (social/cultural) public event
- Launch daily outreach with the Mobilization Mobile Unit* visiting schools, markets, enterprises, events, etc.
- Organize a nutritional support plan to assure that Peer Support Group members have adequate food supply
- Outreach for Input: conduct survey on health priorities, raising awareness of the Community Care Club
- Hold monthly Community Care Club Meetings, with special guests, speakers and a social cultural activity
Capacity Building
- Distribute ‘Help Wanted’ poster in community - Call for Future Community Care Champions* (leaders)
- Training workshop for ex-patients to become Community Care Champions with employment prospects
- Organize training workshop and partnership forum for health workers and care providers

4. Irrigation and Nutrition

Activate Advocacy
- Further partnerships with district, provincial and national health programs and political leaders
- Enable the expansion of Peer Support Group with social support incentives and TB case finding bonuses
- Organize CCC Mobilization Events (social/cultural) once every two months as free public events
- Develop and initiate an action plan including events around WTBD, World AIDS Day, etc.
- Train Community Care Champions in national advocacy and resource mobilization for the community
- Develop resource mobilization needs assessment to scale-up FCOE and other community health services
- Organize workshops and mobilization meetings in the workplace of the private and public sector partners
- Hold ‘Know Your Rights and Responsibilities’ Workshop to disseminate the Patients’ Charter for TB Care
Towards Sustainability
- Initiate process of formation and establishment of Community Care Club as an NGO
- Research and develop local income generation mechanism for auto-finance in the mid to long term
- Affiliate Community Care Club activities with all health provider programs in the community
- Monitor and evaluate progress to date and document lessons learned for modeling
- Establish employment rehabilitation program for Peer Support Group members who complete treatment

5. Growth and Blossom

Driving Down Disease
- Expand case finding bonuses to members of Community Care Club, increasing earlier case detection
- Begin sponsored incentive program for successful completion of TB treatment
- Utilize the Mobilization Unit (Ambulance) for targeted proactive case finding in hard-to-reach populations
Scale-up Community Participation
- Mobilize resources to employ Champions as advocates and health activists
- Produce broadcast-quality video documentary starring the ‘Community that cares’
- Launch advocacy campaign for resource mobilization to scale-up FCOE / other community health services
- Complete registration of local Community Care Club NGO, set up office and develop work plan
- Develop a local community health assembly and system of broad based representation
- Hold ‘Check Your Rights and Responsibilities’ Workshop to evaluate local implementation of the PCTC

6. First Harvest

Reap and Roll
- Study and evaluate progress on indicators and produce collaborative report for dissemination
- Organize local election campaigns for representatives to community health assembly
- Update Handbook with lessons learned and best practices arising from the Community Care Clubs
- Organize an annual ‘Celebration’ event to grow a sense of ‘community’ and encourage greater participation
- Engage experienced Champions to seed and grow empowerment in other areas and regions - Plan for increased output in the next ‘growing season’ - raising the standards of care in the community

The process of mobilizing a community to responsibly participate in stopping infectious diseases and improving their health services requires bringing together a broad based partnership in common cause. This collaboration becomes a springboard for dynamic and innovative ground-level outreach with immediate results. The methodology of Growing Empowerment in Community Gardens is applicable in almost any high burden country, adaptable to local needs, and offers the technical assistance of the World Care Council. It is also a ‘living’ framework for action, evolving always from ongoing contributions, best-practices, suggestions and inputs through a Wiki-Handbook for implementation. ( http://www.patientscharter.org/index.php?title=Handbook )

In face of rising pandemics and shrinking resources due to the economic downturn, it is time to grow rights and responsibilities in community gardens. Together, we will harvest better care for everyone in need.

Glossary of Terms

CCC - Community Care Club: An non-profit community based organization set up to mobilize and empower the local population to participate in improving their health services through innovative partnerships, macro-ecomomic initiatives, social-cultural ‘fun’ events, and communication campaigns. The ‘Club’ is open to all members of the local community, either resident or workers, and offers economic benefits, social-cultural events such as film showings, concerts, sporting events, and useful information to participants while promoting better health and well being. Raising awareness and raising smiles - a new dynamic Club for Community Care.

Community Care Champions: A number of selected members of the Patients’ Peer support Group who have successfully completed treatment will be trained as advocates and activists to sustain the momentum of the mobilization. These dynamic ‘agents for change’ will be employed to help reach out to others in their communities and to mobilize the resources needed to scale-up health services locally. The Champions will also be ambassadors / teachers organizing workshops and speaking engagements on a national level, and help to drive the Rights and Responsibilities approach of empowering communities through out the country.

FCOE - Future Centre of Excellence: The community, organized and mobilized, will lead the advocacy for resource mobilization to scale up key TB Care Providers in the local area so that they will meet all the International Standards for TB Care (ISTC), the tandem document to the Patients’ Charter for Tuberculosis Care (PCTC). The process of forging a Centre of Excellence in the local community, with the ‘end-users’ actively seeking the funds through national and international sources, breaks new ground in building partnerships in health, and spreads the ‘ownership’ of services.

GIPT - Greater Involvement of People with Tuberculosis: A Declaration of Principles that are the basis of dignified and meaningful participation of those most affected by the disease. As with any issue or experience, it is the people whose lives are in question who should have not only a say in how they are treated, but must be heard by decision makers. As part of their Rights and Responsibilities, patients should be at the center of the ‘community’ and drive the ‘consumer’ demand for scaling up services to confront the disease.
http://www.patientscharter.org/index.php?title=GIPT

IT Access 4 All / Open Source for Open Health: Bridging the gap in access to recent information technology is an important part of this empowerment methodology. Enabling marginalized people to learn both the basic skills and have access to IT tools can open the door to both greater knowledge and informed decisions, and behavioral change in health related matters. A series of workshops, Access 4 All, the loan of pre-loaded notebook computers with internet connections to both patients and key community leaders, and setting up the patients’ waiting room and Drop-In Centre with wireless access will compliment the development of the Community Care Club website, by and for local members.

MARCOM CARE - Marketing Communications for Community Care: The initiative will develop a new and unique platform of communications which delivers focused messages through a wide variety of supports to 'sell' the idea of community participation in local health improvements. Media will include local television, press, radio and a vibrant, uplifting 'street' presence with the Mobilization Mobile Unit, billboards, posters, handbills, scratch card, and high profile public events. The macro-economic scheme for Club members (discounts at local retailers in exchange for publicity and new customers) will also offer an avenue to drive forward communications. More than simply having a logo on a support, sponsors will be encouraged to fully explore new ways of getting their products highlighted within the community. A small team of marketing communications experts from the private sector will be gathered together as an advisory board on strategy, messaging and their delivery, and a basic training course for a few Club members in marketing communications for the community can be organized.

Mobilization Mobile Unit: The Outreach Team will use an ambulance, vibrantly decorated for advocacy and mobilization, to conduct visits and be a mobile support for public meetings and info-events. The vehicle, equipped with a mini video recording studio, exterior sound system, and wireless internet, will go to where the people are as opposed to waiting for them to arrive at the hospital for information. Visits to local schools, market-areas, enterprises, public meetings and events will be organized with this innovative tool for outreach, and communications on ‘street level’ wherever it is seen or heard.

PCTC - Patients’ Charter for Tuberculosis Care: The Patients’ Charter outlines the Rights and Responsibilities of People with Tuberculosis. It empowers people with the disease and their communities through this knowledge. Initiated and developed by patients from around the world, the Charter makes the relationship with health care providers a mutually beneficial one. The Charter sets out the ways in which patients, the community, health providers, both private and public, enterprises and governments can work as partners in a positive and open relationship with a view to improving tuberculosis care and enhancing the effectiveness of the health care process. The PCTC allows for all parties to be held more accountable to each other, fostering mutual interaction and a ‘positive partnership’, and is a key element of the WHO Stop TB Strategy. http://www.patientscharter.org

Patients’ Peer Support Groups: As one of the initial activities, the Outreach Team will set up a Drop-In
Centre at the FCOE and bring together patients to form a support group. While helping these patients successfully
complete treatment with increased literacy and assistance with their difficulties, it will also offer a training program which enables support group members to become advocates and activists, with the possibility of employment and further education.

TAP - Technical Assistance Program: The World Care Council has a special program to provide
comprehensive technical assistance for the setting up and development of projects using this methodology. It offers aid and support to any community organization in high burden countries to implement this rights and
responsibilities approach to empowering patients and their communities, as recommended by the WHO and other international agencies.

©2007-2009 World Care Council

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