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WorldWeWant2015 Content
on Thu, January 17, 2013 at 01.30 pm

Lead Theme 3: Decision-making and accountability

The development landscape has changed considerably since 2000. Global and national systems of health measurement, accountability and governance were designed for a different era.


1. What changes to systems of decision-making, monitoring, evaluation and accountability are needed to guide efforts towards the end of the HIV epidemic in the Post-2015 development agenda?

2. How can we improve measuring progress and impact, particularly for different populations within countries?

3. How can we ensure a more powerful role for civil society in national decision-making

4. How can global health institutions better engage and represent the interests of the global South?


Thematic papers:


The moderators are:

Michaela Clayton Ed Attapon Ngoksin Rotimi Sankore

Michaela Clayton is the Director of the AIDS and Rights Alliance for Southern Africa (ARASA), a regional partnership of civil society organisations working together to promote a human rights based response to HIV/AIDS and TB in Southern Africa. She is a human rights lawyer who has worked on HIV/AIDS and human rights issues since 1989 and is the co-chair of the UNAIDS Reference Group on Human Rights.

Ed was born and raised in Thailand and educated in Russia. He previously worked for the International Treatment Preparedness Coalition on HIV treatment literacy and community mobilisation around access to treatment, care and support for people living with HIV. Previously he also served on the Programme Coordinating Board of UNAIDS representing NGOs from Asia-Pacific. He is now working at the Global Network of People living with HIV (GNP+) as the Key Populations Officer. Coming soon.

Please or to post a comment.
Anonymous from
Fri, February 1, 2013 at 02.57 pm

Colleagues and friends,

You all said that civil societies have played a key role in holding government accountable. I would like to know how our efforts can be sustained and strengthened in the next few years. More importantly, who can we, as civil societies, rely on for support to help meet our capacity needs so that we can effectively advocate for improved response to HIV and issues around human rights (particularly for populations disproportionately affected by HIV who bear the burden of the epidemic).

How can we ensure a robust civil societies' response to issues re corruption, conflicts of interest and transparency? and in general, how can we reinvigorate the AIDS movement in the Post-2015 era?

Please share your thoughts...

Mon, December 26, 2016 at 09.36 pm

Friends, Best way to stop aids/HIV is to use a condom for a safer sex. HIV is increasing everywhere (Europa, Africa, Asia...). BIRD

Barbara Rogers writer from United Kingdom of Great Britain and Northern Ireland
Mon, December 5, 2016 at 09.32 am

My first question in any evaluation is:
Are your HIV/AIDS programmes integrated within reproductive health generally? If not, why not? Read the SDGs!

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Thu, January 22, 2015 at 04.02 pm

Out of Research findings, identifying issues like limited privacy to HIV patients while undergoing treatment, where they have to go specifically HIV special areas for treatment, cannot access their medication in normal pharmacies--leaves me with a question like, should there be normal procedure for the treatment of HIV patients? If yes, would it increase its spread?

The other issue are: infected children that lack counseling and parental support as well as limited access to the needed feeding--all these suggest that whether Decision makers, Civil Society Organizations, have to engage based on the high level of participation and involvement of the beneficiaries. Programs have to address directly existing concerns by those already infected and those those need to be protected from the spread like the youth, sex workers, t mention but a few.

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Tara Ballav Adhikari Tara Ballav Adhikari from Nepal
Mon, March 18, 2013 at 01.00 pm

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Anonymous from
Wed, February 13, 2013 at 05.09 pm
Anonymous from
Wed, February 13, 2013 at 08.25 am
Anonymous from
Mon, February 4, 2013 at 04.52 pm

1. Consulting with Civil Society and organizations that implement the work that will be done. This will address the feasibility of the 'improvements' versus that greater need.
2. Countries need to have a voice in directing the insight. The different populations know how to handle their own better than a later cohort, so by allowing the voice of the individual population address their needs the cohesive nature of the measurements can be altered based off the results.

3. So many so the civil society partners are not being heard, nor are they having their needs addressed. this causes a gap in leadership and for the general population.

4.By identifying and seeking out civil society leaders from the global south and putting them in a advisory role. Getting the voices for the interest area on a program board or review panel allows a insight to needs that are not able to be seen in a western prospective.

Anonymous from
Mon, February 4, 2013 at 03.02 pm

Los sistemas de rendición de cuentas tiene que tomar a las poblaciones más afectadas para la medición, no solamente a embarazadas y jóvenes, pues estos promedios no reflejan cómo se desenvuelve la epidemia en poblaciones donde las prevalencias son de algunas decenas a un ciento de veces más altas que en población general, como en usuarios de drogas, trabajadoras y trabajadores sexuales, mujeres trans, hombres gays y otros hombres que tienen sexo con hombres. Medir los promedios, sobre todo en la mayoría de los países donde la epidemia es concentrada, no da información veraz para la toma de decisiones y son medidas que discriminan a aquellos que más lo necesitan, fomentando la inequidad. Para esto, los sistemas de salud, de educación, de justicia, las encuestas de población, los sistemas de seguro social y empleo, deben medir indicadores sobre condiciones de vida, acceso a servicios públicos, condicionantes sociales de la salud, entre otros, de usuarios de drogas, hombres gay y otros que tienen sexo con hombres, mujeres trans, trabajadoras y trabajadores sexuales, entre otras, así como de quienes viven con VIH.
Dichas poblaciones, así como las personas con VIH deben recibir también formación política para poder participar en los foros de gobernanza de la respuesta, en condiciones de igualdad. Cabe decir que dichas poblaciones no pueden estar por encima de las decisiones.
Se puede fomentar las mesas de discusión en la forma de foros que incluyan a personas con VIH, de los grupos con altas prevalencias y funcionarios de salud, educación, justicia, trabajo y vivienda, como gobernanza democrática. Esta gobernanza puede ser parte de foros más amplios de participación ciudadana, no forzosamente de salud, pues sus puntos de vista son interdisciplinarios, más allá de la salud. En los foros de salud, dicho enfoque debe también ser includio. El enfoque de derechos humanos deber ser observado, pues estas poblaciones marginadas y minoritarias no puede ver sus derechos sujetos a aprobación mayoritaria. Y los gobiernos tienen la obligación de protegerlos. Indicadores en cuanto a legislación y políticas públicas protectoras de la discriminación y que garanticen igualdad de derechos en salud, educación, justicia, vivienda y trabajo pueden ser construidas para personas con VIH, hombres gays, otros que tienen seco con hombres, trabajadores y trabajadoras sexuales y usuarios de drogas.

Guiselly Flores from
Mon, February 4, 2013 at 02.03 pm

En muchas conferencias y protocolos se habló y los estados asumieron compromisos sobre el Mayor Involucramiento y Participación efectiva de la comunidad. Esto es difícil de implementarlo en los países y al parecer a los tomadores de decisión no les favorece la participación de la comunidad precisamente por la vigilancia y la rendición de cuentas que van a solicitar.
Es necesario influir para que se incluyan a las comunidades de personas viviendo con VIH en mesas de toma de decisión y mayor acción de vigilancia en diferentes ámbitos del estado.

Tomar en cuenta a las diversas comunidades no solo de poblaciones claves, mujeres, jóvenes, también de comunidades nativas, indígenas, la respuestas acertadas tomando en cuentas sus realidades, su contexto.

Empoderamiento de las comunidades para hacer efectiva su participación en ámbitos de decisión en la respuesta al VIH, desde el diseño de las políticas, en la implementación, la vigilancia, el monitoreo en todos los niveles, locales, regionales, nacionales.
Crear observatorios de monitoreo y vigilancia para las acciones y respuesta del VIH, dirigidos plenamente por las comunidades. Esto permitirá hacer efectiva por ejemplo el monitoreo de políticas públicas sobre disminución del estigma y discriminación, igualdad de género, acceso a servicios integrales, de salud sexual y reproductiva entre otros, apertura de los gobiernos locales, regionales para la participación comunitaria.

Anonymous from
Mon, February 4, 2013 at 03.10 am

How can civil society gain greater voice. Perhaps the solution is linked to accountability and transparency. Understanding the the very power structures at work at local and national level is one of the surest way of affecting influence and change. Finding the most effective accountability mechanisms and ensuring that civil society are represented is key. This means looking for opportunities at local as well as national levels. Meeting your local political representatives and other influencers at local level as well as approaching national bodies such as Human Rights Commissions. The agenda has to be mutlifaceted.

Anonymous from
Sun, February 3, 2013 at 09.05 pm

Often asked me to write the proposals in Internet surveys. Unfortunately , I rary get a feed back after collected all proposals: why someone's offer rejected or accepted. If this continues, the survey will be more and more of formalin; community participant nominal. For protocol. And we can lose ideas of initiative and courageous leaders.

Anonymous from
Sun, February 3, 2013 at 06.16 pm

Decision-making, monitoring and evaluation, and accountability systems must take into account and address the (often intersecting) structural barriers to service access and political engagement, including stigma, discrimination, criminalization, coercion and violence on the grounds of gender, HIV status, socio-economic status, age and sexuality (among many others) and ensure that every effort is made to meaningfully involve the individuals and communities most affected by HIV in these systems, recognizing that these efforts require sustained investment in:
• building the advocacy and leadership capacity of networks of women and men living with HIV, sex workers, women and men who use/inject drugs, networks and organizations of young women and men, caregivers, and others to be meaningfully involved at every stage of these processes;
• strengthening of the evidence base, especially around gender dimensions of HIV acquisition and policy and practice which effectively address these;
• research, particularly for women-centered prevention technologies;
• scale-up and roll-out of approaches that work for women and girls, including comprehensive, high quality, integrated SRHR and HIV services that are tailored to the needs of women and girls in all their diversity;
• strategies to prevent and redress violence against women and girls, in addition to broader and increased investment in sexual and reproductive health and rights, and promoting the empowerment of women and girls as an integral and indivisible part of any HIV response;
• ensuring universal access to treatment through services that are accessible, gender-sensitive, non-discriminatory, and uphold confidentiality;
• moving away from punitive policies that criminalize people living with HIV, sex workers and people who use drugs, towards more rights-based responses; and,
• Integration of gender and HIV policies and strengthening of gender budgeting.

Anonymous from
Sun, February 3, 2013 at 05.55 pm

The need for effectiveness in decision making, reporting and accountatbility calls for greater role of affected populations and communities. Working jointly with CSOs, the affected population must be engaged in programme planning, design and reporting. Focusing on relevant but limited indicators that are easily understood by affected population will enhance reporting and demands for greater accountability. The concept of "Know your epidemic and response" must be applied to all future health and development interventions especially at the community level.
Empowering CSO to better understand the right based approach to development and facilitating national policies such freedom of information laws will enable CSOs to demand greater accountabilities from duty bearers. CSO "shadow reporting" on national reports on international treaties and committment must be encouraged and sustained. International network of CSO such as the International HIV&AIDS Alliance and Global network of PLHIVs have proven to be an effective mechanisms for greater participation and effective functioning of national CSO. These international networks should be established for all Post 2015 priorities

Global solidarity is critical for global health, hence the need to strengthen north south collaboration for global health. In addition to strong collaborations between north-south universities and research institution, there is the need to strengthen technical support and knowledge transfer through e-learning facilities. E.g. WHO e-library for developing countries, the USAID sponsored e-courses and other e-learning opportunities for UNAIDS and UN staff which have facilitated knowledge transfer at minimal cost. In veiw of the limited internet access in many developing countries. It will be useful to provide these e-learning courses on CD-roms, which can be easily be replicated and distributed at minimal cost. If these CDs are backed by technical support facilitation and discussions at country and community level it will be an effective way of knowledge transfer and building of local expertise on numerous developmental interventions in developing countries. Strengthening the capacity of national universities and research institutions will be a critical first step.

Patrick Brenny from
Sun, February 3, 2013 at 10.37 am

A key sucess of the AIDS response is that it has come, first and foremost, from the advocacy efforts of many affected communities and groups, without which the global response to AIDS may never have taken off. The critical challenge is translating that community ownership and advocacy -- as well as governmental accountability to their citizens and their needs -- into all of the various local situations where this transformation is still sorely needed.

Anonymous from
Sat, February 2, 2013 at 03.08 pm

At an age where information has become so widely available over the internet, a means to ensure sustainability of existing framework that we have today is to expand our knowledge infrastructure. At the same time, leaders and educators need to encourage the populace to adopt continuous education as part of their lifestyle. Developing economies have always been putting a premium on education to move people out of their poverty; at uncertain economic times such as this, the strategy that needs to be embraced should be no different. It requires less cost to acquire the information we have today than it took three decades ago; however, only few people acknowledge the importance of this change. Educators in developing countries are needed to help the public disseminate and differentiate the useful information from the useless ones. This should take little training and a modicum of self-motivation, which is expected of all who are living amongst a civil society.

Anonymous from
Fri, February 1, 2013 at 12.49 pm

Lawrence Mbalati

The influence to key decisions will be vital post 2015 hence it will be critical for civil society to redefine its mandate through honest reflections of what has been achieved in the past 2 decades. What role is civil society going to play in decision making and response to the epidemics?Whether it will play the role of the referee (Advocacy and Vanguard) to hold decision makers accountable or the role of the player (directly involved in decision making and implementation of policies) or taking t on both roles? I also think it will be crucial to analyse decision making between North and South in terms of policy, decision making and advocacy.

It will be critical to preserve the gains and lessons derived from AIDS response and activism in the past decades while expanding opportunities and mitigating risks ahead. We need to look at the long term solutions to address the ailing health systems while trying to fix the most pressing challenges like access to prevention, treatment, care and support.

How can we take the lessons of community mobilising, organising, advocacy and lobbying forward in combination with other strategies which seem to work to build a society that is non-tolerate to abuse of human rights, corruption and lack of delivery to essential services. Building competent society and cadres in leadership that are going to continue holding government accountable for the delivery of health and other socio-economic rights.

Anonymous from
Fri, February 1, 2013 at 12.43 pm

Currently we are facing downsizing of funding for health. Projections from 2002 to 2010 recorded a increase in funding towards HIV mainly but not for health systems in general or for sexual and reproductive health and rights - a better approach to addressing the epidemic. From late 2009 until now, there has been a drastic downward trajectory. The question is what do we do now that all that funding is drying up and the health global health institutions such as PEPFAR and MSF are pulling out of most of our countries in SSA. I'm not sure if we can even blame them. This downward spiral of funding is not being supported by an upward rise of increased national level health budgets because our governments do not seem interested to carry their own share of the load. We are in the dearth of a crisis. Our governments are still relaxing and consulting; but clearly not on how to be more accountable to their people. We, as stakeholders, seem to be dependent on the mercy of such institutions, as even going to government institutions seems like a daunting task - ill-treatment, stock outs, insufficient human resources. My question is why are we so scared to demand accountability? Why do we allow Presidents like Zuma, to renovate mansions (est. at around R206 million) at the expense of the health of the people. Our advocacy efforts to "name and shame" governments, are generally counteracted with criticisms from the public; who see these officials as demi-Gods who should live like kings, while they grovel like slaves. Unfortunately mind sets need to change. Sadly, it is when the bomb drops that humans seem to react. But can we risk millions dying of drug-resistant HIV and have a repeat of the late 90's. We need to strategise better and demand accountability. Our current advocacy campaigns are weak and predictable. We need to sit at the negotiation table with governments, putting forward concrete business case models as to why we need to stay alive. The campaigns need smart arguments and boardroom negotiation tactics by civil society; if we are still hoping to have an AIDS agenda post 2015. We have to stand up for ourselves. I guess we can thank the Global health institutions for highlighting some important service delivery strategies we can take forward. These strategies can only work if we, ourselves hold governments accountable and include ourselves in the planning process. Last time I checked; we, the citizens are the government and not the other way around.

Anonymous from
Fri, February 1, 2013 at 12.04 pm

For the last 12 years, a coalition of people living with HIV, professional care givers, scientists and political leaders from rich and resource-limited countries have been setting up an unprecedented mobilization to tackle the HIV epidemic. With the financial means available (through the Global Fund and PEPFAR), more political will and the affordability of high-quality generic drugs, lifesaving therapies are delivered to 8 million people in the poorest regions of the world today.
The pursuit of the fight against HIV should be included in the post 2015 Development Agenda. We must finish what we started, with more dynamism and courage. While AIDS is not over, political and funding mobilizations are weaker than ever.
1. From a governance point of view, our common fight against HIV must again improve the meaningful involvement of people living with HIV. Nothing for us without us must remain our motto. It means our participation in the decision making process regarding the global fight should be reinforced and should be used as a source of inspiration for other issues;
2. Country appropriation should remain the DNA of our movement. International efforts are to be done to meet the needs expressed by the implementing countries and not decided by mind-changing leaders or technocrats. All decisions must be based on scientific evidence, not on ideologies;
3. Access to health and all related support must be established with targeted populations. Not for them. They know better than anyone what their evolving needs are. They need to be supported so they can improve their involvement, including in monitoring and evaluation of programs;
4. The Human Rights based approach must be reinforced everywhere: access to health means access for all, including the most at risk populations, those who are marginalized, those who are despised by their governments or societies;
5. And, finally, if civil society organizations and members expect governments and international organizations to be held accountable, civil society should also, equally, be held accountable.
AIDS is not over; it’s an evidence-based fact. With 2.5 million new infections in 2011, the spread of the epidemic remains out of control. With the post 2015 Development Agenda, we must finish what we have started. It’s an emergency and a development challenge. Yet, our achievements must be an inspiration for all, in order to build a world with more solidarity, and respect and promotion of Human Rights.

Anonymous from
Fri, February 1, 2013 at 01.52 pm

Eric, very well said indeed. Totally agree with you on the fact that the AIDS movement has taught the global health communities why 'Nothing for us without us' is central to all decision-making processes and how it could be best translated into action.

You also mentioned that the International efforts are to be done to meet the needs expressed by the implementing countries and not decided by mind-changing leaders or technocrats. - How can we change this power dynamic? Many northern governments, bilateral or foundations still dictate where their resources should go and how the business could be done. Do you think this dynamic will ever change in 2 or 3 years?

You also mentioned that all decisions must be based on scientific evidence. Is this always the case, particularly in relation to supporting communities living and disproportionately affected by HIV?

And lastly, how key populations could better contribute to measuring AIDS-related outcomes and broader health outcomes? Who is best placed to provide these populations with support (both political and to meet the capacity gaps)?

Please elaborate.

Anonymous from
Fri, February 1, 2013 at 09.20 am

Decision making system depends on type of resources we use: a source of recourses has to have right and a tool to participate in decision making; otherwise access to the recourse will be lost. Despite the fact that HIV counteraction already involves many types of resources, by the day, the mainly recognized and monitored recourses are money and material goods that limits development of the HIV counteraction.

I guess further improvement of the decision making system would be possible in case when non-financial recourses are well recognized by policy makers, managers, communities' leaders and activists, well evaluated, and easy-to-use M&E tools for these recourses existed. I mean the affected communities’ capacity first of all, such as social networking, self-support, a persons’ ability to education and readiness to change once’ behavior, peer-education, a power to influence to political decisions and other of this type of recourses.

Anonymous from
Wed, January 30, 2013 at 03.15 pm

The problem is the excessive focus on measurements. We have to accept some outcomes, like decreased stigma and discrimination, are impossible to count. This doesn't mean they are not important - in fact I think that the most important AIDS related outcomes are difficult to quantify. We need innovative tools for these - ethnographies over time, change stories, etc. Accountability is important but the obsession with results must not detract from important work.

Anonymous from
Mon, February 4, 2013 at 04.33 am

Stigma and discrimination are measurable and quite easily so. An enormous literature from content analyses to social distance to attitudinal measures exist to capture stigma and discrimination or their opposites, empathy and support. We can foster the opposite of discrimination--positive support--by underscoring in our decision-making and measurement and advocacy all the groups and regions affected, that is, advocating for one another; underlining (as others above have brilliantly stated) that HIV shares root causes with a multitude of other conditions, and that the response to HIV also is a response to other health conditions, TB, sexual and reproductive health, Hepatitis C, to name just a few. We can focus on the continuum of HIV disease from the prevention of transmission to the support of those who grieve for friends and family (in its broadest sense). We can continually break stereotypes and caricatures of those who have HIV. By doing so we model the breaking down of stigma and discrimination and humanize our response. We can advocate for equal dignity of those infected and affected regardless of region, station in life. To do this requires the participation of those infected and affected in partnership with political leaders, policy makers, communities, resource-holders, and scientists--basic, medical, and social. Two thoughts will make this very concrete: I have never seen the virus do an interview to decide whom to infect; I have never met a community or family dealing only with HIV.

Anonymous from
Fri, February 1, 2013 at 01.30 pm

Hi Julia,

Thanks for your contributions. I agree with you on the this. Did you suggest that we need a different monitoring system to measure AIDS-related outcomes in the Post-2015? How will that look like apart from going beyond quantitative data or, precisely, indicators on commodity distributions (condoms distributed, workshops held or ARVs distributed)?

How stigma and discrimination at a population level can be measured, otherwise?

I'm still not clear..

Anonymous from
Mon, January 28, 2013 at 04.18 pm

Greater funds should be channeled into Home based care for PLHIVs instead of the capacity building workshops. The capacity building is essential for the health care providers and the volunteers. Also community members should be motivated to take active part during outreach services for instance during Testing and Counselling services at the community level, participants who participate should be given some form of motivation like T-SHIRTS, CAP ETC. to draw more people for the testing.

Anonymous from
Sun, January 27, 2013 at 07.13 pm

Dialogue inclusive of young leaders in decision making!! Too many policies on book shelves catching dust.

Anonymous from
Fri, February 1, 2013 at 03.04 pm

Not sure if the dialogue alone would be enough. You now see the trends: governments and multilateral agencies have in the past year extensively engaged young people in the dialogue. To what extend the dialogue is translated into programmes and actions that create enabling environment for young people to access prevention, treatment, care and support services?

Who are the 'young leaders'? and at what level of 'decision-making' did you refer to? I am not quite clear. Are these young people working in and for their communities to advocate for improved service uptake among their peers? or are these young parliamentarians making budgetary decision?

Please elaborate

Michaela Clayton from
Fri, January 25, 2013 at 01.40 pm

Picking up on Ed's comment of earlier today, how do we more effectively measure the impact of the response to HIV? In my experience measuring the impact of a human rights based response to HIV is particularly challenging, given the slow, incremental and often intangible changes that are achieved through the promotion of a human rights based response.

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