Who cares about the evidence?

Demonstrating the value that civil society plays in the HIV response is vital. In June 2014, a group of Alliance Linking Organisations met in Cambodia and decided to take matters into their own hands. Oum Sopheap and Jill Russell were there and tell us more.

“We - KHANA - make a significant contribution to the national response, and yet every time we are asked for concrete evidence, we don’t have it. It’s so frustrating not being able to prove the effectiveness of the community services we provide.” Oum Sopheap is Executive Director of KHANA, the largest local NGO implementing HIV programmes in Cambodia. KHANA leads the HIV Flagship Project, part of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), focusing on services to prevent HIV infection and improve the care and treatment of HIV positive people in Cambodia.

“And it’s not just us. In Washington too, gathering evidence is a big fixation. USAID have been supporting us (civil society in Cambodia) for 18 years, and despite a reduced HIV prevalence, they have no documented evidence to prove the success was as a result of x or y.”

Sopheap is not alone in his concern. This issue has been a discussion point at the annual Directors’ meeting of Alliance Linking Organisations for the last three years.

“We definitely have a problem” says Jill Russell, an Associate Director of the Alliance, who heads up the Programme Impact team. “Evidence is not a term we take lightly. By evidence we mean research that has followed established protocols and has the required ethical approval. The bulk of the evidence we have does not conform to that definition.”

“We thought the best way to move forward was to advocate for big evaluation projects conducted by the World Bank and UNAIDS to include community responses. However, the few studies that have emerged have just not produced the results we need.”

Hunting for proof

We have already started to look at ways to improve understanding of our impact.

Following the publication in The Lancet of the Investment Framework for HIV and AIDS in 2011 which recognised community mobilisation as one of 11 ‘critical social enablers’ we engaged the London School of Economics and Political Science (LSE) to conduct a systematic review of the role of community mobilisation across the Alliance. Their findings, published here, revealed a tendency for positive impact - particularly when engaging groups with a strong collective identity. However, they also suggest that the inconclusiveness of the findings “reflects problems with the evidence, rather than indicating that community mobilisation is ineffective”.

And in 2013 we embarked on an 18-month collaboration with the Faculty of Public Health and Medicine at the London School of Hygiene and Tropical Medicine (LSHTM) to provide technical guidance in research capacity and development, and we established an Innovation Fund.

And we are drawing on the research experience of some of our Linking Organisations, including The Humsafar Trust in India and Via Libre in Peru, who already have solid experience of conducting rigorous protocol-based research. In the case of Via Libre, this includes expertise in conducting National Institute of Health (NIH) funded clinical trials.

Innovation to sustain

“Sustainability is key. Against the backdrop of a call for more health for the money, civil society needs to become more effective and efficient, and focus on greater impact and innovation. Our Innovation Fund will seed new community based approaches and models of service delivery which have the potential to improve the health of people living with HIV and those most at risk of infection” says Jill Russell.

The Alliance is currently funding seven innovation projects at a small scale and if proven to be effective, there is greater potential for scale up – both within the Alliance and beyond. These include trialling peer-led models for HIV testing and referrals, which may reduce the delay between receiving an HIV positive test and initiation into treatment, and using mobile technology to expand HIV services to key populations (i.e. men who have sex with men and sex workers) in sub-Saharan Africa.

But is this enough?

Jill and Sopheap want to do more. They convened a meeting in Phnom Penh and invited a group of 14 programming and research staff from Linking Organisations in Cambodia, India, Ukraine, Peru and Kenya to form a new Alliance Research Think Tank.

“We felt we wanted to try leading the research agenda from the front. We wanted to bring together people in the Alliance who are or who have the potential to do operational research themselves to discuss how we can collaborate on these issues”, said Sopheap.

The new Think Tank cements a commitment to have a more coordinated mechanism within the Alliance for building evidence and improving learning. The goal is to have a body of work to release at the International AIDS Conference in Durban in 2016 so that we can more confidently make the case for investments in evidence-based community programming.

And later this year, the Alliance will further contribute to the debate on the role of civil society in the HIV response by publishing a series of essays by leading civil society actors. The report, which has been edited by South African writer and activist Sisonke Msimang, is to be launched at an event to be held at the London School of Economics in October.