I have been working in public health and human rights for nearly 15 years, and for around half of that time I have been involved independently as a researcher, analyst and facilitator. I specialise in HIV and AIDS, and within that a large proportion of my work is on issues related to “key populations” such as men who have sex with men, transgender individuals, and sex workers.
These groups are often much more affected by HIV than any other group, and yet there are all sorts of barriers that get in the way of making sure they are involved in effective programmes. They are often stigmatised or marginalised by society and even criminalised. Moreover although we often use the terms “key populations” or communities to refer to these groups, the terms are misleading: although there may be groups or communities of men who have sex with men, transgender people or sex workers, none of them is necessarily a homogenous or self-identified community. Although categories are useful in epidemiology and other types of research, the people who fall under these categories are diverse, and they aren’t always that useful from a programming point of view.
Decision makers and people with political authority have often used this fact as an excuse for ignoring the need to protect the human rights and health of key populations. Their existence is often denied, and because of this, no effort is made to find out more about them and how they are affected by HIV and AIDS and human rights violations. And because there is no data, decision-makers – whether they are in national governments, NGOs and donor organisations – are reluctant to enact policy changes or make funding available.
So this is where Where there is no data is going to start: by talking about data on key populations in the context of HIV. The next post on Where there is no data, entitled “The data paradox” by Stefan Baral, explains this in more detail. Many readers will recognise these problems and will have come across them.
As well as discussing the challenges and paradoxes, however, we are even more interested in discussing and sharing how to respond to them, in a practical way. In the next few weeks we hope to publish posts discussing the following questions:
- If no research has ever been done on a key population in a country, where do you start? What does the first ever research look like? What comes next?
- What types of study about key populations and HIV exist? What do they tell us, and what do they not tell us? Where can you find out about existing studies in a given country? How do you go about running these studies – what sorts of skills and resources are needed?
- How do we know when data is “good enough” for decision makers to use? What makes research credible?
- What are the challenges and risks involved in doing studies on these topics?
- How can marginalised and stigmatised populations get involved in research and in using data?
- Is it enough to have good data? What if decision makers are determined to ignore it?
On Where there is no data, our aim is not just to discuss these questions in theory but also to give examples, describe experiences, and point readers to where they can find more information and resources. We welcome comments and discussions, and contributions from readers, as our How to get involved section describes. And as the About section describes, while we are beginning by discussing HIV and key populations, we are keen to expand our focus. There’s also plenty of room for discussion on the forum we have set up on Facebook and on our Google+ page.
What do you think of our plans? Do you have any suggestions? Please tell us about them using the comment field below, or via the form on the Contact us page.
We look forward to welcoming you back when we publish our next post.