Marginalised populations

For the final part of the world conference I attended the symposium on marginalised populations. You may remember my comments from the ZAMSTAR blog about the ‘real’ TB community. So I was very interested to attend this symposium .Marginalised populations often represent the ‘real’ TB community within the general population. Often these communities are largely uneducated and discriminated against. Consequently they find it difficult to seek and receive treatment and negative health prospects are associated with this.

Every community has marginalised populations. These can be produced through certain behaviours such as injecting drugs or beliefs such as the religion they follow. These groups are on the edges of society so as a result can be difficult to reach through traditional routes such as: nation programmes and broad community interventions. Marginalised groups are important to reach because certain groups can possess a high prevalence of active TB. Due to these high prevalence rates they pose a significant danger for undermining TB control. For these reasons alternative interventions are required to help reduce TB prevalence within these groups.

The symposium brought up the issue of knowledge. Current knowledge of the prevalence or severity of TB within certain marginalised groups is insufficient. This is because data is rarely disaggregated from the national data collection. Also a lot of these groups are ‘off the grid’ therefore no data is able for collected and analysis. This makes tackling the problem all the more difficult because we don’t know how bad the problem is or where to target certain interventions. More effort needs to be made to obtain data for these groups.

One project aimed to empower and involve community groups in hard to reach slums. This involved a two pronged programme. The first prong consisted of community referral network. This involved training individuals within the community. Training allowed individuals within the community to detect TB symptoms and refer the at risk individuals to a clinic for diagnosis. A target group for carrying out this intervention were shoeshine boys; once trained they would be able to refer customers who displayed symptoms for TB. When this intervention was analysed it showed an increase in number of people referred within the community to health care centres. The second prong aimed to provide training for pharmacists to detect symptoms and refer patients. This showed a positive influence on treatment behaviours when compared to non-trained pharmacists. The importance of training was further emphasised by an interesting talk by the Unions Subrat Mohanty who said training was a major focus in community activities involving sputum collection and development of a patient charter.

The final talk of the day was by Andrew Hayward from NICE UK. Andrew and his team identified that the clinical guidelines for TB care were limited. This was because the guidance panel was dominated by physicians. Therefore a balance was required in order to improve the clinical guidelines for TB care. This balance was achieved through the involvement of multiple stakeholders. Some interesting observations were produced as a result, such as: services did not always support treatment and as a result treatment for TB was difficult for patients to access. Secondly more find and treat methods were required to find vulnerable individuals within the community. These improvements were achieved by involving expert patients who provided a patient voice for the development of the new guidelines. This shows a great way to get people from different disciplines to work together to produce better guidelines for TB treatment. These guidelines would be tailored to the TB population and hopefully treatment success would improve as a result.

The importance of participation can’t be understated. In order to develop the most effective services everyone needs to be involved. Participation of patients is the only way to ensure that services will fit the needs of the people who use them. I have the feeling that too often decisions are made solely by clinicians and policy makers. These groups can’t always relate to the needs of marginalised populations within society. If these groups are not listened to then there needs will forever be ignored. How is a clinician supposed to relate to an injecting drug user who lives on the street? I don’t know what they want/need in terms of services and I don’t think many other people would know. This means marginalised populations will remain ignored and stuck in a dangerous cycle of discrimination and under-provision.

That’s it from me

Peace

Simon

Prof Squire interview

Professor Squire is the president of The Union. I met him at the Unions world conference on lung health, he kindly gave me 30 minutes out of his busy schedule to talk about his experiences in the TB world.

Here are a few facts:

Disciplinary background: Clinical medicine. Internal and chest medicine

Born: Zimbabwe

Grew up in: Botswana and Kenya

First wanted to be: A vet

Main clinical interests: infectious diseases due to growing up in Africa

First heard of the union: In Malawi I was working as head of the medical department in Lilongwe. It was here that I came across the work of the Union because they were pioneering standardised approaches to clinical medicine

How did you get into public health: Previously I had thought that public health was primarily concerned with sanitation, water and education. When in Malawi I realised that there was a direct intersection between public health and clinical medicine.

Simon: Do you think public health was previously centred on water, electricity and sanitation? and what developed your interest in the field?

Prof Squire: Yes. I was always interested in prevention and I was also interested in TB (because my ward was full of it). I actually did HIV training before TB. I soon realised Individual management of these patients was not going to get us anywhere. During the development of the DOTS programme I did a lot district visiting with the National Tuberculosis Programme, because of this I wished to increase peripheral work as well as work in a centralised hospital. Public health improved my clinical skills, I still do clinical work in Liverpool which I think is important.

Simon: What are the three biggest issues currently concerning TB control?

Prof Squire : For me there is only one. That is poverty. This idea plays out in different ways, people will think about it in different ways. Some people think we will only solve TB if we solve world poverty. That is not what I mean; I think the biggest issue is that we need a clearer recognition that the TB patient population are predominantly poor. So we should shape everything we do with them to suit these needs. So let’s think hard about where we offer diagnostic services, where we give information and how we empower patients. I worry that this is not high enough up on our agenda.

Simon: Is TB control directed at the wrong level?

Prof Squire : Not at the wrong level with the wrong focus. DOTS gave us loads of info and data. Free treatment was provided, but it wasn’t really free because there are extra costs associated with free treatment, giving up work ect. Health service providers get caught up in the importance of a new drug or diagnostics test and then sit and think about how to deliver it from their own perspective. We need to think about how people will interact with it, get into and reach it. Sometimes we lose sight of that focus that we are providing services for the poor.

Simon : So do we need to put ourselves in shoes of a poor person seeking treatment?

Prof Squire: Every time.

Simon: Is the current model for TB control going in the right direction? And what would you change?

Prof Squire: Yes and No. I think we have to invest in the treatment model but with a poverty focus. We need to make people understand that there are lots of things we can do with the biomedical model for people seeking to get treatment and to increase access to treatment. That is our job as clinicians. We need to articulate and to look at upstream determinants such as: social housing, engaging with employers and job security. These are important things. I don’t know if these things are our responsibility, actually I don’t think it is our core competence.

I sometimes think we get diverted by that, we get stuck in a dialog of: in poverty there is only so much we can do as doctors. Sometimes we think it is all to do with economics and politics. That is true but we can’t get paralysed by that, we need to focus on what we can do for services, get that right. Learn from that and articulate the importance of upstream determinates. Push for this, argue for, create a revolution about and be more politically active.

Simon: Is TB not vocal enough?

Prof Squire: Yes but I’m not sure who needs to be more vocal.

Simon: What is the comparison to HIV and their patient led revolution? Should we learn from them?

Prof Squire: TB has had its advocacy during the time where there were no drugs during the 1920. There was huge patient led activity which led to the formation of the Union and lots of other patient led organisations. I get irritated by the HIV world, saying ‘you have a lot to learn from us’, because we have had that phase! HIV is just in the post initial drug phase. My interest is in how the current advocacy seen in the HIV world will that be sustained?

Simon: So should HIV need to learn from us?

Prof Squire: I think so, HIV says ‘we need to learn from them’. They have reinvigorated us, and I agree, we do need more patient visibility on the global stage. There are patient structures within the Union, which were needed. We have embraced that approach. We are in a different phase with TB. My challenge to HIV activists is where will you be in 20 years? The other problem is that part of the disease cycle is that where has TB ended up? In poor and vulnerable populations, how do we articulate their need? That an alcoholic, drug user needs our help, how do you make that appealing? HIV will be in the same place in times to come. At the moment HIV can affect any one. TB has gone past the stage of infecting bond sellers in New York. It has been left in poorer parts of the world. So TB is a different baby. We need to work with the HIV world to target these vulnerable populations.

Simon: Who is the most influential person you have worked with?

Prof Squire: hmmm that is a tricky one I have worked with lots of influential people.

Simon: You can have two if you want to?

Prof Squire: Okay, it depends on what you mean by influential? For my own thinking: Dave Gwatkin from the World Bank he talks about health service delivery to different sectors of society.
Influential in world of TB control: Tony Harries of the people I have worked with

Simon: What do you think is the next big step in TB control?

Prof Squire: Making our services responsible to their (the poor) needs, how do we organise services or a new tool. We need to Re-focus delivery of care. Rather than thinking is this a nice test, we need to be thinking is this test going to have an impact on a slum dweller.
Simon: Is eradication possible with current provision or do we need to focus more on the social determinants of health?

Prof Squire: I don’t think it (TB) is eradicable with current tools alone. But I’m not sure if ‘we’ need to focus on the social determinants of health. We need to focus on what we do best, which is being clinicians but also push for the consideration of the social determinants of health.

I am worried that if we get too caught up in the SDH discourse, we will in effect be abrogating our responsibility for our own backyard. If we as health care providers and clinicians don’t get our house really sorted, then we cannot have a positive effect on the social determinants of health. We need to show the social determinants of health people that we have done X,Y,Z. Make sure the discussion is not sterile and meaningless. Show them we are doing something so that can do something as well.
8. What do you enjoy most about your job?
Prof Squire: New ideas about how to do what we are doing better

Many thanks to Professor Squire for the great interview. He was incredibly interesting and informative. His ideas on focusing on the poor populations (where TB is most prevalent) for treatment and care could not make more sense, there is no point producing a clinical programme that focus on the wrong population. If we want to make deeper indents into the TB problem worldwide we desperately need to heed this advice.

I also agree with his comments on how clinical care needs to get its house in order before it starts dealing with the social determinants of health. Although I did get the feeling that he saw social determinants and clinical care as separate areas of need, whereas I would argue that the two need to be more interlinked to deal with the TB epidemic. Okay that’s it from me.

Cheers

Simon

ZAMSTAR

The current TB crisis in South Africa is out of control. With every crisis a hero is needed, in this situation ZAMSTAR is coming to the rescue! ZAMSTAR is a huge project/study which is trying to understand the bigger issues associated with TB. These are real world issues which will involve the community and undergo rigorous evaluation.

The problem, as identified by ZAMSTAR, is that people are not being diagnosed. This could be because of indifferent symptoms, stigma from others, problems with the health centre and its staff and finally TB being a low priority to the sufferer.

The study is huge, involving nearly 1 million people from the community. ZAMSTAR analyses the effect of the programme using a randomised trial protocol. The trail will test the effectiveness of community mobilisation (ECF) and household intervention programmes. Community involvement aims to increase community activities such as plays, concerts, ect. At these community events sputum collection will be advertised and provided with the result of increasing diagnosis through these events. These events I’m sure will not only will increase TB diagnosis through sputum collection but also by advertising the TB situation for others. As an added bonus they will probably be great fun for the community too!

The second initiative was household interventions (HI). These involve bringing testing and education to the home. The justification behind the initiative was that not everyone wants to attend health clinics for various reasons. Also health care infrastructure may not be sufficiently developed to provide assistance and education.

Now to the results… Both initiatives increased diagnosis and are cost effective especially ECF. However neither produced a significat decrease in TB prevalence. This result is confusing because you expect TB prevalence to fall with the removal of active cases through active case finding and diagnosis. The problem here is that Tb prevalence is a bigger issue than diagnosis. It is a chain of events such as:

Symptoms==>TB suspects ==> Diagnosis ==> Treatment ==>Cure

At each step in the chain, numbers decrease, therefore more action needs to be taken. This action needs to focus on other parts of the chain not just diagnosis in order to decrease TB prevalence. Perhaps the focus needs to be on the health service so people with TB can actually receive the treatment they need.

ZAMSTAR has not yet got the result it deserves and has a long way to come. It has developed a huge network of partners and patients, these can be utilised to generate more data. In conclusion Superman has kryptonite and ZAMSTAR has the complexity of TB control, hopefully with more work, more positive results can be seen. This is not the last we have heard from ZAMSTAR!

This discussion got me thinking about the concept of community in relation to TB. Is it the same thing? Is the general community the same as the TB community? I would argue that it isn’t. This is because TB predominantly affects poor and marginalised people. These people are not always part of the community as a whole. Therefore a scheme which puts on community events may miss these excluded people. As well as this intervention which visit people’s homes may miss the people who do not have homes? Therefore maybe targeting the community needs focus on the TB community and no the community as a whole. By doing this projects will not miss vulnerable populations and because of this make a more significant impact on TB prevalence.

Social Determinants Of Health

My writing got impeded by cocktails again last night, seems to be the thing to at conferences! so yesterday I went to the working group on social determinants of health (SDH). this was an interesting meeting organised by the extremely nice and interesting Calton Evans. the meeting talked about the plans, aims and objectives of the working group and what everybody could do to help.

Some major issues that arose during the meeting was first the need for funding into the social determinants of health. This funding appears to be difficult to get because SDH don’t fall under a clear heading. They are not strictly Biomedical and they are not strictly developmental, they are somewhere in-between and this confuses funders.  However in my opinion this is what makes them so interesting they are a fascinating mix of lots of disciplines and specialties.

the second point was the lack of research into SDH. There are a few studies into SDH but this is not enough due to the enormity of the SDH area. Therefore a mountain of evidence will be required. Its like trying to say DOTS is an important model for TB treatment, with only 2 studies to support it. The final point was that social determinants need to be put on the agenda. I feel in order to this we need to tackle points one and two. the working group will reconvene on the 15th of Feb for a symposium and meetings, I hope to attended as my flight back from Delhi is on the 14/02, lucky for me!

I’m going to find some more Coffee, conference fatigue is starting to hit.

Simon

HIV controversy

Quick post – interesting discussion on HIV  controversies. Francois Vender came out with the best comments, please discuss them, see if you agree?

“TB deserves more ambition” “TB care should be taken over by the HIV sector” “TB control tries to deal with TB on the cheap and produces the worst outcomes” “TB advocacy is severely lacking compared to HIV”

I feel some of the comments are misguided and too centered on the situation in South African problem when in other countries the situation is better. However I do strongly agree with the comments on Advocacy I really think it is time for TB to stand up and be counted. HIV has produced huge campaigns which everybody has heard of, ont he other hand TB campaigns don’t seem to have had such a global effect, why? Surely the fact you can cure TB should make the campaigns more passionate and give them a bigger impact. this topic is defiantly one for further discussion.

Off to the working group meeting ont he social determinants of health.

Simon