Does lots of health policy research and analysis get wasted?

Standard

The recent article in the Lancet on “Fair trade” in public health data (http://bit.ly/96DZkU) got me thinking about my own work and the extent to which it does or does not get shared.

Quite often I am asked to research and write reviews on a specific topic related to HIV/AIDS programming.  Some are literature reviews, covering peer-reviewed research and grey literature, whereas others are “policy reviews” and are based on peer-reviewed research, interviews with experts or policy leaders, and written organisational policies.  A smaller number of papers are based on primary research.  My own papers are not of a type or standard that can be published in a peer reviewed journal, for various reasons: because I tend to do the research and data analysis on my own; because they can’t lay claim to be systematic reviews; they can be quite long and detailed; and because I am asked to provide conclusions based on my judgement and mine only.

When I do this type of research, it is often commissioned for a very specific purpose and audience.  Many of the papers I have written, for instance, were intended as background for meetings or discussions on a given policy or theme, or to help decision makers formulate programmes.  Once the meeting has happened or the programme has been designed, the paper in the form I submitted it has served its purpose.  Some clients will publish the paper on their website (like this one http://bit.ly/aRuzNC and this one http://bit.ly/9Wi6Lo) but many don’t.  There is some logic to this since in some cases they may go on to produce something better or more detailed based on the paper.  Alternatively they feel that the paper is so specific to the purpose it was written for, that it is unlikely to be of interest to a wider audience.  Another reason might be that they just don’t want to go to the effort of validating and publishing this sort of paper.  Unlike universities, neither my clients nor myself are evaluated on the number of publications we get into journals (or the number of glossy reports published).

Over the past four years, and for the purposes of this type of work, I have read and made notes on literally hundreds of documents, and I have compiled research on a number of topics.  For instance:

  • Epidemiological analysis of HIV risk in specific population groups
  • HIV programme evaluations
  • Global AIDS programming for men who have sex with men and transgenders
  • Policies of global health initiatives in relation to scaling up health, HIV and AIDS programmes
  • Human rights components of national AIDS programmes
  • Human rights of sex workers, and the sex worker rights movement’s evolution 
  • HIV and AIDS prevention programming with young people; sex workers; migrant workers; men who have sex with men
  • Economics and sex work
  • Integrating delivery of HIV prevention, care and treatment services
  • Community systems in HIV programming

Again, most of this is not primary research – it is research based on data that is already accessible.  But at the very worst, I have a number of fairly comprehensive thematic bibliographies, many of which have detailed annotations.  At best, I am sitting on at least a half dozen papers that include a passable compilation and analysis of data on these themes.  But I can’t really do much with them apart from use them myself – which is great for me but not much use in the grand scheme of things.  I do not “own” the rights to them, which is how it goes in freelance work (and anyway, I’ve been paid). 

So back to the Lancet article.  Another category of public health data that often fails to get shared is the “grey” literature of the type churned out on a regular basis by freelance consultants.  Most of it is secondary data, but there tends to be quite a lot of good stuff in these papers, if only because they compile large amounts of information on a given subject.  It is incredibly wasteful that this sort of work isn’t put somewhere where others can refer to it or use it.  I often ask, cajole, and pester clients to find some way of disseminating this work, and I’m happy to spend some of my own time adapting the documents.  But by the time I do this they’ve moved on, and the paper is long forgotten.

I’ll keep trying…  and if and when I am authorised I’ll post them on here, which is a modest start.

 

UPDATE 9th March 2010.  Hooray, well I just got permission to post up here a review I did of best practice in HIV and AIDS prevention programming in sub-saharan Africa with young people, sex workers, and migrant workers.  The report is quite long so I am going to break it up into each population group.  At some point in the next few months…

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