Good intentions will not end AIDS, evidence-based practice will

By Dr Marija Pantelic

My home country Serbia has been and continues to be a recipient of international development and humanitarian aid. This has shaped much of how I perceive international development and has instilled in me a passion to make the sector more evidence-based.

<p>Sign on side of road encouraging people to know their HIV status</p>HIV awareness sign for a voluntary counselling and testing site at Kalomo District Hospital, Zambia © International HIV/AIDS Alliance

At the International HIV/AIDS Alliance, we recognise that key populations affected by HIV (such as lesbian, gay, bisexual and transgender people, sex workers and people who inject drug) and young people (who are also disproportionately affected), no matter their circumstance, deserve HIV services, policy and programmes that are guided by the best available evidence. This is easier said than done, and we must ensure that research and evaluation strategies are both methodologically robust and accountable to communities.

I have worked on many evaluations of foreign-funded programmes in my country. However, this work was frustrating at times because I did not believe the indicator and results frameworks that I had to report against were meaningful. Evaluations were often conducted as a (slightly complicated) counting exercise. For example, we would count how many training sessions were delivered, but we never measured whether these training sessions actually contributed to increased knowledge, skills or behaviour change. This was simply assumed.

We must be truthful when estimating the impact of our programmes

People also often cherry-picked positive changes that had occurred within the country to attribute them to a single foreign aid programme. This was a methodological flaw that epidemiologists call an ecological fallacy. Namely, just because something is happening at the country level does not mean that this change is occurring among the end users of your specific programme.

Also, country-level changes occur over many years and are often a product of complex systems, geo-political shifts and hard work of local governments and civil society. Assuming that country-level changes occur due to a single foreign aid project is not only methodologically flawed, it is also a form of exploitation because it involves taking credit for the work of many local stakeholders.

This rhetoric can be dangerous because it reinforces the stereotype of poor countries being helpless victims. Indeed, as a Serbian national, it often felt like my people were being denied agency.

Being accountable to communities

Today I work as a senior advisor for research and evaluation at the International HIV/AIDS Alliance, which is dedicated to local, community-based responses to HIV and research that is accountable to communities. We define evidence-based practice as making decisions by integrating the best available evidence with programmatic expertise and community preferences.

We recognise a programme cannot be sustainable or evidence-based if it only takes into account research evidence and disregards community preferences and programmatic expertise. But this requires a cultural shift in the sector, whereby programmers, decision makers, funders and influencers all actively use evidence (and have time for it!). Researchers also have a critical role to play and ensure that they disseminate their research findings widely and transparently. 

Chalmers and Glasziou (2009) estimate that 85% of all health research is avoidably wasted due to publication bias, methodological flaws or poor reporting that render the interventions impossible to replicate.

At the core of evidence-based practice is a principle of humility and dedication to do more good than harm. The first step is to understand that intervening in people’s lives must not be taken lightly. Indeed, despite the best of intentions, intervening in people's lives can result in unintended harms. Admitting this would help improve how we fund, plan, implement and evaluate programmes. Ultimately, it should lead to a more honest, robust, effective and accountable system.

Obligation to intervene wisely

Beyond the ethical obligation to intervene humbly and wisely, there are also important practical and cost-related incentives. The advent and expansion of HIV treatment have resulted in steady declines in HIV incidence and AIDS-related mortality.

However, we are seeing increasing incidence rates among key populations who are often criminalised, for example gay, bisexual and other men who have sex with men. At the same time, we have the largest cohort of adolescents and young people living with HIV in history, and they are dying more than ever before. While most age groups are experiencing a decrease in AIDS-related mortality, adolescent deaths are increasing.

We will not turn the tide unless we invest in programmes that are guided by the best available research evidence, respond to people’s concerns and preferences and use expertise in programme implementation.

Find us at AIDS 2018

Next week at AIDS 2018, the Alliance and partners will be presenting evidence to improve and support HIV programming and policy for key populations and young people. Examples include:

  • Easy to preach, difficult to practice – Experiences of evidence-based programme management (led by Alliance India)
  • Hidden and covered – Underreporting of violence in transgender project even after empowerment processes (led by Alliance India)
  • What do we know about interventions to prevent and reduce gender-based violence among young people living with, or most affected by, HIV in low and middle-income countries? (led by Alliance Secretariat in collaboration with Oxford University) 
  • What do we know about reducing self-stigma among people living with HIV and key populations affected by HIV? A systematic review of interventions from low and middle-income countries (led by Alliance Secretariat in collaboration with Oxford University)

Through these pieces of research, we will openly discuss some of the failures of well-intentioned programmes in a hope that we can improve our own programming. If you are interested, come and join us at the conference.

For a broader selection of our research highlights, see our roadmap.

Watch this space for an update, and follow us on Twitter: @pantelichmarija @theaidsalliance

Update: Read Marija's blog on Three critical evidence gaps from AIDS 2018.