Never the twain shall meet? HIV and health systems approaches to community

In the field of health systems research there have been some promising moves towards acknowledging and celebrating the role of people and communities. Most recently the Cape Town Statement from the Global Symposium on Health Systems Research provides a political agenda for future work in which it is acknowledged that:

The drive towards universal health coverage should be led by citizens, and local and national governments rather than by external actors, and in line with the needs and priorities of communities and citizens.

If you work on HIV you may think, ‘Well, tell me something I don’t know!’ as this has been a mantra evoked in work on HIV for decades and has informed the creation and governing architecture of funding bodies such as the Global Fund to fight AIDS, TB and Malaria. Over the past few years the HIV world has been consolidating learning on the role of communities in combatting the illness in various statements and actions which support the concept of ‘community systems strengthening’. This is a strategy which compliments and links with health system strengthening efforts.

As someone who straddles the health system and HIV worlds I can see the ways in which the two sectors could learn from one another and I am curious as to why there isn’t yet a shared vision of the future. I expect there are a lot of other people like me. To try and better understand some of the differences and similarities between the two approaches I had a chat with Matt Greenall (a consultant with the Global Fund) and Miriam Taegtmeyer (Liverpool School of Tropical Medicine) to try and understand some of the barriers and enablers of joint work.

Kate: I worked on HIV policy and advocacy, got more interested in health systems, and then wanted to improve the use of evidence in decision making. Tell me more about your interest in communities, HIV and health systems.

Miriam: I am a clinician with a background in HIV and infectious diseases. I am also manager of the REACHOUT Consortium – a project in six countries in Africa and Asia which is looking at close-to-community providers of health care. I got into REACHOUT through HIV because I was supporting a WHO operational manual on home based counselling and testing. In part this was a response to the push for task shifting. I observed many types of intervention, visited homes and projects and interviewed counsellors and stakeholders who were implementing these projects. In some places, like Kenya, community volunteers support trained lay counsellors; in Malawi community agents distribute self-testing kits and link people to follow up services. These close-to-community providers have a unique opportunity and perspective because they see and hear things that you don’t experience when people come to the health centre and because people communicate very differently when they are at home and in charge of their situation. This approach left me with a number of questions: How can we maximise these opportunities? Will home-testing work in terms of accuracy and quality? What about establishing effective links into treatment and other health services? What about workload and supervision and how this effects people working for little or no money?

Matt: I’m a consultant for the Global Fund and a lot of my work focusses on community systems strengthening. The concept of community systems strengthening was introduced, in part, to ensure that community level work is not lost with the big push we have seen on health systems strengthening. The health systems building blocks have the advantage of describing the health system well. Carolyn Green did a great job of developing similar definitional advice on community systems when CSS was first introduced. This is useful because if you can systematise acknowledgement of the support that community level interventions provide for health then community sector organisations can more clearly articulate what they need and governments or donors have an idea of the types of investments that they should be making in this area. But working on planning with National AIDS Councils I still find it difficult to cost and enumerate these things. I think we are at the stage where this needs to move from a political idea that we can get behind to a more technical movement that charts what works, under what circumstances.

Kate: When I look at some of the barriers to joint work I often think of the whole debate about horizontal versus vertical approaches and the critiques we heard of disease specific interventions. I remember this as being quite an aggressive attack on people working on HIV in particular. Too often these critiques paid little attention to some of the forms of stigma and discrimination which do make HIV a unique health condition. There were people working on HIV saying the response had got too ‘medicalised’. But it is not an ‘either/or choice’. Why do you think we have this divide between the health systems and HIV worlds? What’s hindering joint work?

Miriam: Firstly I think we have a problem in terms of language. When we talk about community views from an HIV perspective we are thinking of people living with HIV, or people particularly affected by the illness. When policies or interventions are being signed off, this is what we mean by community endorsement. This is not the way that we in the health systems sector would define community. So we are sometimes talking at cross purposes.

Matt: I agree, people searching for literature on community systems strengthening are not finding relevant research because although we are researching the same concepts we have a different way of framing them. There is a muddle about what constitutes the community. This can sometimes cause problems. There is a lot to learn from the HIV-related concept of community involvement. (Although it is not without its problems, for example hierarchies within affected communities which mean that some people, for example sex workers, are sometimes marginalised). But what does ‘affected community’ mean in terms of conditions like Malaria or TB? There have been attempts to apply the concept of “key populations” outside of HIV but does it really work in the same way for other diseases? Where you have to implement interventions – for example in bed net distribution – is where we can learn from the health system approach.

I like that the Cape Town statement describes health systems as broader than the “obvious”.  One of the things I struggle with is when I look at the standard health systems diagnostic tools (JANS, Service provision assessments etc.) is that they are pretty squarely focused on health centres, microscopes, doctors, nurses, cold chains etc. But it’s almost as if all these other actions and movements that contribute to health don’t exist.  I’d like to see those tools broadening out to have a wide-ranging understanding of where actual useful services and support are provided – and I mean services that are recognisably “health” like community health workers (CHWs), health education, availability of drugs/prevention commodities outside of health facilities for example.

Kate: I have heard that some people who work on community systems don’t involve CHW in their definition as they are seen as ‘part of the health system’. To me this is a huge mistake. What we are seeing is that there are disconnects between CHWs and formal systems which leads to inefficiencies and poor support to these workers. What can be done?

Matt: It’s as if CHWs are being seen as ‘agents of the state’ with managers, job descriptions and the like. Back to language again but I like the concept of close-to-community providers because it captures a lot of people. Because it is not just CHWs that are missing from the thinking. There is also a gap when it comes to for-profit informal providers of health care such as drug sellers and pharmacists. Future Health Systems and others have looked at this. They are community members, but not acknowledged as such, especially if our concept of communities only focuses on those most affected – maybe we need to find a way of talking about affected communities in the context of specific, exceptional diseases like HIV, as well as the “broader” community which is so important to health in general.

Kate: Where are the areas that are ripe for mutual learning?

Miriam: In HIV there are a lot of lessons from task shifting that are relevant to the Cape Town Statement. For example systems for supervision and refresher training that have been focused on the HIV services can easily be expanded and learned from. In REACHOUT we are exploring group supervision models for CHW and this grew out of what LVCT Health and others do to support home-based HIV testing counsellors in Kenya.

Matt: I think that there is a lot that we can learn on tackling the social determinants of health. Interventions like mobilisation – supporting sex workers get organised or helping people back into work once they are on HIV treatment; and work on gender based violence or legal support to people criminalised because of their sexuality. These are all part of the HIV response but not part of the health system. In HIV we’ve become very accustomed to talking about human rights, social protection, gender norms, exclusion etc.  And so perhaps HIV people are more prepared to see, for instance, a legal support clinic or support for girls to stay in school as an HIV intervention. But I think (correct me if I am wrong) you’d get more scepticism from the maternal health or TB communities.  There are social determinants that are much more closely related to HIV than any other health issue of course, but I have a bit of a feeling these issues can be rejected as being only about HIV. I have worked a lot on malaria this year and talk of gender or inequality, and so on, can tend to get written off as being “about HIV” even when actually it could be quite relevant.

Miriam: I think it is a good time to raise these issues with HIV funding flat lining. I think there is a real tension between delivering quality services and achieving depth. A focus on health systems in general rather than particular conditions can lead to a broader but less informed approach. We might lose a bit of quality, for example, in decentralising testing. In specific tasks people also need support to do it well. But how is this support delivered? This is key. With the scale up of treatment HIV is becoming more normalised and can be lived with like other chronic illnesses (that’s not to say we have solved the problem of stigma).

Because of the stigma and discrimination that accompanies HIV there is a great deal of learning that could be passed to people working on Ebola now. There are also overlaps on the reintegration into communities and the vital role the survivors can play in communities if supported – for example in encouraging early diagnosis and treatment. To tackle Ebola we will need to think through how traditional customs can be adapted – for example around burial – there are a lot of lessons from HIV on adapting customs.

Matt: Work on HIV has established high standards for what we mean when we say community involvement. This is not just at the grassroots – it is also in the higher levels of governance at national and international level. How will people working on health systems use this knowledge? HIV operationalised meaningful participation in response to demands from people living with HIV and other affected communities. (And along the way, essentialised groups that were basically epidemiological categories to becoming politicised and programmable communities).  How do you operationalise that in other areas of health if it is not spontaneous?  I advise malaria people that they should be looking to get community health, women’s health, women’s rights activists involved rather than trying to invent a malaria community. But it would be interesting to hear more from others on what community involvement looks like when it comes to health systems.

By Kate Hawkins, Managing Director of Pamoja Communications, @PamojaUK

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