africa blog

August 15, 2003

Stuck in a Jakarta Traffic Jam? Find your way onto the Information Highway!

Heloise Emdon, Jakarta, 15 August 2003

Pragmatic innovation:

The day the lights went out from Ottawa to New York. Frank Tulus and myself found ourselves stuck in Jakarta traffic jams. It is not these traffic jams I will here describe, apart from mentioning the smoggy, pushy, hooting, humid, clamour of cars and mopeds, there is nothing remarkable about the Jakarta traffic jams: except the huge inadequacy of the infrastructure to carry the people.

It’s the other highway I want to tell you about: The more than 50 ISPs in Indonesia would not settle for the high cost of 2Mb lines that the Indonesian Telkom is selling them at Rupea 40million per year ($5m). In Indonesia we learn how the ISPs and the community have been pragmatic in “getting around” this high cost.

jakarta_woman.jpgNurlina, Onno’s wife who met us because he was on a “roadshow” in Bali, drops us near the high rise buildings in the Mampang district, a newer section of what seems to be downtown of sprawling Jakarta. We are closer to the JW Marriot that got bombed just two weeks earlier. It is hard to locate a downtown because even where these multinational towers scrape the sky, there are low-rise commercial and domestic buildings, a labyrinth of small streets that bottleneck into large intersections, and then dual carriages that cut between this planning stew with footbridges to cross over. Clearly some thoughtful planning did go into solving how to get people across the busy highways.

Frank and I walk across a footbridge spanning the dual carriage way, view the remains of an informal settlement that was moved from the area, drop down onto a dirt road track that leads to a small, unassuming road where the Indonesian Internet Exchange building stands. There are no serious security checks, or so it seems, we go up in a lift to the Apjii offices, the secretariat that serve all the Indonesian ISPs. Their offices are all located in this building. It is around lunchtime and the lift is loaded with young men, none of them a day over 30 years. I later discover that when the Indonesian government started licensing ISPs one of the conditions for registration was that the licensees be younger than 35 years. No one can explain why the government thought of this investment in the youth, but it has paid off in getting innovators to invest in Indonesia’s future. It seems, however, that the government stifles a lot of other innovation.

Demand for internet bandwith has increased dramatically, and could be ascribed to the both corporate and multimedia demand. Everyone is mum about the effect of VOIP on the system because of the telco’s monopoly on voice traffic, and despite magnitudes of compression available for VOIP, one must safely assume that in a country where there is less than 10% penetration of fixed lines, a total of 6 million fixed lines and 7 million GSM connections, the dramatic demand for data, around 1Gbps could be ascribed to at least some voice traffic.

jakarta_window.jpgWhen large ISPs experienced similar traffic problems, and Telkom would only commit a further 2Mbps if the ISP were to pay for the construction and terminal equipment at huge expense of $12 000 for installation and the further $40 000 per month, they agreed to establish a “carrier neutral data centre” to interconnect with each other at no cost. They located the ISPs servers, routers and switches on the same floor of the Elektrindo Building.

By this peering they were able to increase their shared bandwith. By physically locating each of the servers as well as all the access infrastructure such as the international gateway on these premises, the servers are peered running Ethernet cable between the peering ISPs in the same building so that they could run 100Mb Ethernet cables (which is restricted to 100m lengths) amongst the racks in the same building and so doing increasing the bandwidth they have available in their local peering point:.

http://www.apjii.org.id shows the following logical graphic of its peering point:

Since the peering point was established in 1999 the bandwidth demand has grown from:

—————————

Based on the annual report of the Indonesian ISP Association (APJII) that can be downloaded from here, the estimated Internet users and subscribers up to the end of 2002 is as follows:

Subscribers Users
1998 134.000 512.000
1999 256.000 1.000.000
2000 400.000 1.900.000
2001 581.000 4.200.000
2002* 1.000.000 8.000.000

*Estimated up to the end of 2002
Table: Growth Indonesian Internet Subscribers and Users
Source: APJII (www.apjii.or.id)
From: Onno W Purbo,

————————————-

The Entrepreneur behind the “only physical” peering point Johar Alam, describes himself as a real-estate manager. The building we are in houses the physical peering point of all the ISPs, and once there the international gateway providers Indosat, and other satellite and cable service providers landed their ports into the same building, as did Telkom which provides the fibre into the rest of the Indonesian archipelago. However its service is not impressive: serving a mere 6 million of the 240 million Indonesian people. It is believed that 50 million Indonesians have never heard dial tone.

jakarta_smile_man.jpgFrom his chapter in the “Digital Review: Asia Pacific” on Indonesia Onno Purbo reports that Indonesia, despite its capacity constraints, is using a peak of 1Gbps.

“As reported by Johar Alam, the administrator of Indonesian Internet Exchange, in the year 2002, the total IIX in country peak bandwidth is in access of 250Mbps. Since the international traffic is normally about three (3) times of local bandwidth, the peak Indonesian international bandwidth is estimated about 800Mbps. The peak bandwidth is normally about 80% of the maximum bandwidth. Thus, it is safe to estimate a maximum bandwidth of 1Gbps from Indonesia to the Internet The ratio of in-coming and out-going Internet traffic volume is about 1:10 as Indonesian is still consume more information rather than produce information.”

Battling for independent regulator

jakarta_two_men.jpgMs Rahayu Juniarti Soehardo and Taru Wisnu show off the publications produced by Mastel, the Indonesian Infocom Society. Representative of all the service providers, the society is working hard at proposing policy on forming an independent regulator in Indonesia.

September 4, 2007

Physicians with ICTs!

joe-mamlin-w-caption.jpgPhysicians are at a crossroads. The HIV/AIDS pandemic in Africa is so big that if care and treatment is to be delivered to the millions in Africa suffering from the syndrome some innovative use of ICTs will be required. Handheld computers or timely and upto-date print-outs from electronically maintained patients records could mean that nurses, or lay people like fellow patients, are able to manage basic clinical encounters, leaving the complicated cases to the physicians. This is the view of Prof Joe Mamlin, one of the founders of the AMPATH program at the Moi Teaching and Referral Hospital in Eldoret, in Kenya’s Rift Valley province.

It’s akin to describing ‘Web 2.0 design patterns’ – “architecting systems so that they get smarter the more people use them …via a combination of customer-self service and algorithmic management, lightweight business models made possible by cooperating with internet services and data syndication, data as the “intel inside”, and so on.’[i]

A nurse should get a patient print-out for every visit with the vital information required for monitoring a patient on Anti-retroviral treatment (weight, CD4 count, other drugs and so on) and should need to add the latest to update the file, electronically would be best. The treatment is fairly straightforward and only complications should be referred to physicians. This would mean that so many more patients could be seen.

“At least 90% of all the treatment is straightforward and can be dealt with by people with less training. At AMPATH physicians only see 5% of the close to 40 000 patients on Antiretroviral Treatment. These are patients with extremely complex malignancies and complications when the first line regimen starts to fail,” explains Prof Mamlin.

Joe Mamlin, retired chief of the Primary Care Division/or internal medicine, came to Kenya for a year to work and stayed. Eight years later he has partnered with many local people and some short-term experts from his native Indiana University (IU). The program that he has supported is AMPATH, (Academic Model for the Prevention and Treatment of HIV/AIDS). The institution that he together with partners at Moi Hospital has built now employs 900 people.

 

In a Randomized Control Trial (RCT) at Mosoriot Clinic, about a 30 minute drive from Eldoret, a research project has placed 8 PDA’s in the hands of community care workers who themselves are on Anti-retrovirals, They are delivering ART treatment to the homes of 194 patients for three month periods, and the new patient visits the clinic on the fourth visit during the fourth month. There are 116 patients in a control group visiting the clinic monthly. Mosoriot is one of the 19 AMPATH clinics. This one was built alongside the regular department of health clinic. However, the number of patients to the clinic increased so much and the clinic is only able to, with the resources it has, to cope with 3000 patients a year, it is already treating 3660. Over 50% of these are on ARVs (1738 patients). Something had to be done to extend the care as the demand for ARVs continues to grow.

PDAs assisting peers to monitor patientsThe research project was started in order to understand the quality of care issues related to patients that will only see a practitioner every three months, rather than every month. The care worker arrives at the research patients homes with an electronic scale, electronic thermometer and enters these vital signs into the PDA, and then is prompted through an interview schedule. Using Pendragon forms, the care worker follows a survey questionnaire to establish as an algorithm or protocol on the handheld. The patients profile is kept on the SD card. Depending on the answers the care giver is prompted to continue monitoring the patient on the next follow-up visit, or is prompted to propose a visit to the clinic if any symptoms entered persist; or is prompted to suggest the patient immediately gets to the clinic; and if the symptoms that are entered are indicative in the algorithm of anything serious, the handheld form will prompt the care giver to call the ambulance to collect the patient.

 

The algorithm includes data on nutrition status, malaria, and other treatments the patient is using and so on. It simulates a regular encounter that a doctor would have with the patient, except this patient only sees the doctor or nurse every fourth month. The research is funded by the Doris Duke Foundation.

Emmanual Keboi (above) is Project Manager for the Randomised Control Trial at Mosoriot Clinic. Herehe holds one of the PDA’s he was charging for a community care coordinator, and synchronises the data on the PALM with the data base he keeps on his desktop. There are monthly meetings with the Community Care coordinators, they feed back their experiences, and the researchers record the outcomes. The care coordinators need to observe what is happening in the homes and report on this, adding qualitative information about the patients in their care. They are also using interviews that measure adherence and stigma responses, an innovative methodology designed by American sociologist Michael Reece and Kenyan sociologist Violet Yebei.

 

Care with a capital C

 

At AMPATH the focus is on care and research. That is care with a capital C. This care goes way beyond bedside manner. This care starts with the medical imperative to reconstitute failing human immune systems. Beneficiaries of the PEPFAR funding for Antiretroviral Treatment, AMPATH, which has a three story newly inaugurated building next door to the Moi Teaching and Referral Hospital, serves 19 clinics (see map below), some of which have opened satellite clinics in areas that are now covering four Western Kenyan provinces that run from the Rift Valley up to Lake Victoria and the Ugandan border.

 

ampath-map.jpgAlthough the average infection rate in Kenya is 8%, some areas in the Lake District there is more like a 25% infection rate. In Chulambo, a district with strong tribal traditions of no circumcision, sexual cleansing rites, wife inheritance and polygamy “the HIV virus has a smile on its face from ear to ear” says Prof. Mamlin. There the infection rate of mothers at antenatal clinics is 25%[ii], higher than in Swaziland which is deemed to have the highest rate of antenatal infections at 24%.

 

Prof. Mamlin seeks new villages almost on a weekly basis in the area around Eldoret to establish new clinics. These fall outside the mainstream public health system, but where they can, will use the premises of public health infrastructure. The treatment is free; the patients get a “nutritional prescription” based on their physical and economic status.

 

Steve Lewis, HHI farm project leaderThe HHI farms around Eldoret are high yielding delivering “culturally acceptable” vegetables and fruit, and each person with the nutrition prescription benefits from this fresh produce and the World Food Program rations of maize, split peas, oil and soy-corn meal for the vulnerable pregnant and lactating mothers, children, the elderly and the particularly weak. Supplies also include formula milk for mothers that have chosen, following counseling, to only bottle feed their babies.[iii] The care services include psycho-social counseling, and once patients recover their vigour again they enter the Family PI, in which they are taught skills for enterprises, and access micro credit.

 

On the day that Edith and I visited we were fortunate to sit in on a regular monthly meeting where over 70 staff representing the clinics and the 23 divisions of the AMPATH program reported back on progress. As it was the first meeting of the year many were giving annual statistics, but mostly the feedback was of the past month. Amongst the new developments was the new radio program that they had been invited to host on a local radio station starting that night. Later that night, while I was intervieiwing Joe Mamlin, Hannah, the nutritionist and PR, called him to report her excitement at the high rate of phone-in’s that the doctor in the studio had received. HIV/AIDS is a rather verboten subject, so telephone calls onto live radio to get to understand better were just one more way of extending their outreach into a broader community.

 

The day had started at 2am for Prof Mamlin, he and the other Indiana Bulls supporters had got up in the middle of the night to go to a local bar, the Clique, which was opened specially for them to view the World Cup baseball game. The Indiana Bulls won, and in the morning when the coordinating meeting was opened Joe Mamlin declares “Today is a special day, it is like a birthday, Indiana Bulls are the world champions!” We later learn about more instances than just their baseball!

 

AMPATH employs 900 people. It started in May 2002 with the collection amongst academic staff and friends in IU who wanted to help the people in Kenya that they saw were dying of AIDS. They first collected the US$1000 a month that it cost to keep one of their patients on treatment who happened to be a final year medical student at Moi University, but was dying. His CD4 count was 30. Five years later, 2007, Daniel is head of one of the care programs at AMPATH. He is legally blind because the AIDS was so advanced when it was arrested, but he is able to work with HIV/AIDS patients.

Dr Sylvester Kimaiyo, AMPATH Program ManagerDr Sylvester Kimaiyo, specialist physician and Program Manager of AMPATH explains: “We had one room in the hospital where we started the HIV/AIDS clinic. We met once a week, and eventually we got so busy we needed to meet only monthly.” Quickly the donations came in to care for 10 patients, then 40. Then they got donor money to support three medical positions. Quickly the clinic was seeing 140 patients and then the UN , together with a few US foundations HP, Elizabeth Glaser, decided to support antiretroviral treatment (ART) through 12 clinics in Africa (2 in Uganda, 2 Rwanda, 2 in Kenya and 2 in South Africa). These were the heady days when the world was starting to count the toll of HIV/AIDS deaths, and the realization that Africa was being beset by a pandemic. By 2003 the Moi Teaching and Referral Hospital had funding to treat 250 patients, treatment still cost US$1000 a patient. The Gates Foundation was not prepared to fund treatment but they funded an evaluation of the outcomes of the treatment. This funding assisted AMPATH to research preventing Mother-to-child transmission (pMTCT), the triple treatment for pregnant mothers (not as in South Africa a single dose of nevarapine which increases the chances of drug resistance later on) and then the evolution to Preventing MTCT (PMTCT) which pulls in both parents to counseling, treatment process. In Eldoret, between 7% and 30% of pregnant women presenting at ante-natal clinics are HIV positive.

Without treatment, transmission of the HIV from the infected mother to child approaches 50%. Research of this approach provides evidence that there is less than a 5% transmission rate. The treatment has always been free and they discovered women suspecting they were infected started to work at getting pregnant so that they could get access to the treatment. Within six months the team was seeing the 250 patients and had hit their donor ceiling.

 

“How were we going to turn away the 251st patient? And, all the others after that? We had to wait for the next year’s donation. We argued, let’s do more!” Kimaiyo recounts.

 

It was then that the PVF Foundation of Canada arrived to visit the clinic and they decided to fund the gap of the further 6 months to treat a further 250 patients for a period of three years. They called this fund, the Bridge of Hope Trust, “bridging us till some other program comes to support us.” By the end of that year they were seeing 800 patients. The global trade and intellectual property challenges were raging over the right for the developing countries to benefit from generic drugs. PEPFAR (the Bush administrations President’s Emergency Plan for HIV/AIDS Relief) was in process. Thanks to the pressure from amongst others the Treatment Action Campaign in South Africa, pressure brought to bear on the pharmaceutical companies around patents for HIV/AIDS drugs at the WTO, which lead to the earlier release of patents for the manufacture of generics, and the much larger market for drugs now, the average first line of treatment per patient per month costs around $30.

 

From AMPATH’S electronic Medical Records to OpenMRS

 

“We got very experienced in the program. We developed a patient profile system; we have records of every patient we have treated,” explains Kimaiyo. The early electronic medical records (EMR) were done in an Access Database, but this early system was unable to scale up at the rate needed by AMPATH. Drs. Paul Biondich and Burke Mamlin were brought from Regenstrief Institute (http://regenstrief.org) to re-design the system in a way that could scale to an enterprise-level system.

 

openmrs-meets-for-blog.jpg

Their stealth weapon was the collection of data. Of the 39,933 patients enrolled for treatment, according to the enrolment stats shared that morning in the monthly meeting, 33,846 are adults and 6,087 are children. The number of deceased in the 6 years since treatment started was 1,735 adults, 213 children, or a total of 1,948. This is 4% of total patients on treatment. There is growing evidence in Africa that the treatment has remarkable results, even though it is reaching only those patients with CD4 counts of below 200 get treatment.[iv] Amongst the sites delivering this persuasive evidence is the IDRC’s funded …..“Development and Interpretation of a Bioinformatics Database to Support and Evaluate the Public Sector Anti-retroviral Therapy Rollout in the Free State Province, South Africa – an area with high burden of HIV-1 subtype C infection”. According to the data collected in the Free State, of those that started the treatment 75% are alive and in care and testify to these “Lazarus” drugs literally raising people from their deathbeds.. The results show that antri-retroviral treatment is extremely effective, as effective as in a developed country, but the treatment is not reaching enough people and many patients are dying while waiting for treatment.

 

Every one of the patients that have been treated in the system over the past six years has an electronic medical record. (Kimayo explains that these include measures of all the vital signs, is captured in an electronic medical records system called AMPATH Medical Records System (the foundation from which OpenMRS was developed); another key area of the program is its laboratory and during our visit we heard about an evaluation of these facilities to continually improve the pathology.

AMRS has its origins at Indiana University’s (IU) Regenstrief Institute which specializes in medical informatics. Joe Mamlin’s computer-head son, Burke, also a internal medicine specialist, was there, and together with friend and paediatrician, Paul Biondich. Burke and Paul started to develop AMRS, the same week they visited Eldoret in 2004. Looking around at the time, there weren’t any perfect solutions that could snap right in. Burke and Paul would have to develop the system from the ground up, using the skills they gleaned from using the world renowned medical record system at Regenstrief Institute during their medical informatics fellowship. Rather than building yet another isolated “stovepipe” in the landscape of early information system in Africa, they decided to create an open-source (freely shareable) foundation from which everyone could benefit – a “tide upon which all ships could rise.” This plan was solidified in the Fall of 2004, when Burke and Paul met another physician, Hamish Fraser from Partners in Health, who was leading similar efforts in Peru and Haiti. Both parties realized they could benefit from collaboration – this collaboration became OpenMRS, a growing collaboration providing an open-source medical record system for developing countries. Through previous work with Hamish, the OpenMRS team chanced upon an existing IDRC partner working on similar patient profiling, Chris Seebregts of the MRC in South Africa.The IDRC’s Acacia program funded, together with Fogarty International Centre grant for health informatics and the Medical Research Council, a meeting of OpenMRS Implementers in Cape Town last July (see Steve Song’s trip report of this) and will soon be funding the 2nd annual meeting in April 2007.

OpenMRS continues to grow and was recently accepted as one of 131 mentoring organizations worldwide for the prestigious and competitive Google Summer of Code for 2007, a program in which Google pays student programmers from around the world to work on quality open source projects over the summer.

Research with a capital R [v]

 

Our local host is John Sidle, who has been working with Moi University for 9 years. Prior to the formation of AMPATH he worked at Moi University as the IU team leader from 1998-2000. After a particularly anxious period when he was seeing several patients die per day he vowed not to return, but decided to return once antiretroviral treatment became available. John is one of three Co-Field Directors for Research, under director, Dr W Nyandiko of Moi University and Dr. William Tierney of Indiana University. Paula Braitstein, a Canadian by birth, and epidemiologist from the ART- LINC (Antiretroviral Treatment in Lower Income Countries Collaboration) coordinated from Bern, Switzerland, has recently joined John and Kara Wools-Kaloustian to share the post of co-field director of Research. ART-LINC is a university-based research network looking at the use of anti-retroviral therapy in 25 low income counties such Morocco, Kenya (AMPATH is a member), Uganda, Rwanda, Senegal, South Africa, Botswana, Malawi, Zambia, Zimbabwe, and Asian countries including India, Thailand, as well as LAC such as Brazil and Argentina and is linked to IeDEA, the International Epideamologic databases to Evaluate Aids. Paula says the research from ART-LINC confirms that Antiretroviral treatment works in low income countries despite the limitation of resources and the difficult lives people live in these countries.

 

“There were a million reasons given why ART would not work in these countries: side effects, people would not be monitored for compliance to the complicated drug regim compared with people in high income countries. Usually in the first three months of patients do get ill, with diarrhea from micro-bacteria, but a patient on TB medication experiences the same side effects. Once they get through the initial toxicity, their immune systems start to reconstitute against the syndrome, they start having normal immune function. Paula will continue her epidemiological work from within AMPATH and also coordinating other research programmes.[vi]

 

Apart from managing the many project such at the RCT using PDA’s described above, this working group is extremely busy with reporting responsibilities, complying with a range of donors funding medical research and seeking peer-reviewed publications for the work coming from AMPATH. John describes a project they collaborate in which is yielding good results: The Gates Foundation is funding research into the co-infection of other STI’s with HIV and counseling to address precautions. Early evidence suggests that when STI’s are cleared up the risk of transmitting the HI virus is reduced.

 

Dr John SidleJohn still spends at least one day a week in clinic. He has also started to work with a particular group of sex workers in the town Burnt Forest on the trucking route from Eldoret into Uganda. These trucks are moving throughout East Africa, from the port in Mombassa to the hinterland, and into Uganda, Rwanda and further into the landlocked countries. He is interested in developing a project to motivate the truckers to come for treatment, to counsel them to ensure they have the correct medication despite their long haul cross-border transporting and access to clinics wherever the travel.

 

He envisages using vouchers to get truckers to come for HIV testing and care, as well as to use condoms consistently, and get tested and then he hopes to get them participating in a GIS programme to track the location of the tuckers in order to reach the sex worker populations with testing and treatment. He also wants to send trucker SMS advice to ensure they comply with the drug taking regime. He already has a truck driver who is on treatment and wants to counsel fellow truck drivers. The sex workers already admit that if they had other better livelihoods they would not do this work, he hopes the Family Preservation Intervention will be able to reach them with entrepreneurial training and micro credit to start working where they need not sell their bodies. Edith is keen to bring this project into the IDRC portfolio.

 

 

Sustainability

 

The US budget vote from the continuation of the PEPFAR program was hung between the Democrat-controlled Senate and Congress and the Bush administration, during our visit to Eldoret in February 2007. It is ironic that the split between the Democratically controlled houses and President Bush could hold up this humanitarian vote. Subsequently the vote was passed; PEPFAR funding will be secure — for another year — sigh.

 

Prof Mamlin believes the American public would not be so irresponsible as to stop the funding on this lifelong treatment. It would be tantamount to genocide. Other commentators are less sanguine about the longer-term commitment from the US government and commitment. Bear in mind, PEPFAR is the only large donor commitment to providing treatment. There must be a reason that the fund is called the President’s Emergency Fund for HIV/Aids Relief. This does not suggest long-term!

 

From reliable sources in South Africa I have learned that PEPFAR is approaching the chambers of commerce in Africa and the US to try and convince them, and the big corporates like the mines in South Africa, to start to fund the use of ART beyond their corporate commitment to their staff, and to support their public health services. None of the large funders, and so far no other Donor agency, is funding treatment the way that the US has. From discussions with USAID folks, the US funding goes to Iraq, Afghanistan and PEPFAR.

 

Many donors have been shy of funding treatment, especially the Canadian funders, apart from the family trust mentioned above, tend to fund the softer issues of prevention. However, what is emerging from the research that IDRC funds in the Free State Province of South Africa with the MRC and UCT Lung Institute. The evidence that is emerging globally from the academic research network ART-LINC, suggest that treatment works, it is saving lives!

 

The impact of the clear evidence emerging from these treatment sites suggests that developing countries especially in Africa need to start committing health budget to building treatment capacity in their public health systems. Donors, on the other hand, would need to support these budgetary expenditures to address the AIDS pandemic in Africa.

 

The big funds are still committed to prevention such as the Gates Foundation which has put money into finding a vaccine cure, but has not yet started to fund treatment. Few if any of the African governments have adopted the policy to commit government funds to the line item of treatment and improve their chronic health systems to deal with the pandemic. The Kenyan government, despite its membership on the board of AMPATH, certainly has not adopted the approach demonstrated by AMPATH by developing its own integrated system.

 

Prof Mamlin assures me that AMPATH is quickly becoming an institution that will run without him. “I will leave when what people do here is daily routing,” says the visionary.

 

I remarked that the institution he was building was indeed exemplary, but that it had not been written up in UN envoy on HIV/AIDS to Africa, Stephen Lewis’s book. Prof Mamlin; clearly tired having risen to see the Indiana Bulls, excuses himself because he has to send emails before rising early the next day to go to a new district in order to find new territory for another clinic. I had learned that Stephen Lewis was on his way to Eldoret, when he personally took ill and had to miss seeing this world class programme. Prof Mamlin admits to not having much time to read, and not even having seen the seminal work that lobbies the world’s government to rally behind the efforts of the people who are fighting the AIDS pandemic.

 

 

 

hhi-farms-eldoret.jpg

Collage 1: Food supporting patients, providing income

High yield farms producing 4 tonnes of produce to patients with nutritional needs also are distribution points for UNFP food parcels. After six months patients need to start their own high yield pocket and learn from Wilfed Sang, manager of Turbo Farm, the technique of this high-yield rotational cropping practice. People on treatment are encouraged to garden in a square meter of soil and recycling their own food waste with home-compost so that they can start selling back their crops. The farms also grow broiler chickens, and harvest their eggs..

 

Imani income creation project

Collage 2: Imani (which means hope) addresses livelihoods for those getting better on ART.

Imani is an entrepreneurial project which is part of AMPATH with micro-credit opportunities attached and here at the workshop employs several people living on ART. One of the drives of the care program is to get people living on the treatment back into mainstream life! The project attracts orders for school uniforms, nurses overalls, beading (beads made from Oprah’s magazine are the most popular because of the bright colours). The workshop also attracts famous volunteers, such as potter Judy Brater-Rose, who is excited to work with the talented clay artists she has found in Eldoret.

 


[i] See O’Reilly’s Radar, quoting Kevin Kelly, http://radar.oreilly.com/archives/2005/08/not_20.html

[ii] Stephen Lewis, Race Against Time, House of anansi Press, Toronto, 2005

[iii] Mixed feeding, using breast milk and formula, is discouraged as it has the effect of compromising the infants immune system. Mothers are counseled to either breast feed only, or formula feed, and both of these with careful training and safe-water programs.

[iv] The South African Treatment Action Campaign is started to wage a campaign to increase the viral load of patients that should be allowed onto treatment in the South Africa public health system to a CD4 count of 350.

[v] For more on Ampath see http://medicine.iupui.edu/kenya/introduction.html

[vi] See: The Lancet paper of the Year, 2006. The paper published – Mortality of HIV-1-infected patients in the first year of antiretroviral therapy: comparison between low-income and high-income countries – published in the Lancet; Lancet 2007,369:91-92

July 2, 2007

The ABC of ICT4D

How best to understand information and communication technologies for development

Heloise Emdon, Senior Programme Specialist ICT4D Africa, IDRC

GPS used in a Morogoro village, TanzaniaThrough experience we know people who earn as little as R1000 a month and who also have a cell-phone. Living on this amount a month means people are living above the poverty line of R14 (US$2) a day.

We need to ask: What do we know about how much people spend on these telephone calls, and why do they make such calls on slight incomes?

While most telecommunications and IT market research is about the top spenders and the top earners, little is known about the millions of very small transactions that make up the mass of most of the worlds population.

However, it is this mass group in the market that makes it feasible and commercially worthwhile for service providers and producers. Their statistical distribution is known as the ‘long-tail’ which is “the colloquial name for the low-frequency or low-amplitude population which gradually “tails off” from the big spenders, or the high-frequency or high-amplitude population. In many cases the infrequent usage or low-amplitude events — the long tail, represented here by the bright yellow portion of the graph — can cumulatively outnumber or outweigh the initial portion of the graph so that they comprise the majority.” http://en.wikipedia.org/wiki/Long_tail

A is for Access

//www.signonsandiego.com/uniontrib/20050826/news_1n26phones.htmlUntil cell phones and the market structures in most African countries changed the ability of the poorest of the poor to have access to a phone, resource-poor people only had access to public phones. Now households and individuals use cell phones to enhance their livelihoods, or even turn cell phones into livelihoods by selling time. Fewer people in these economic conditions use the internet, though it is much cheaper for instance to make voice over the internet call. The internet just does not reach that many poor communities, either in rural or urban settings. However, there are several public access internet access points, either businesses or development projects. Using the internet also requires a set of skills, least of which is literacy. But illiterate people can make use of highly visual interfaces, although access and availability are the limiting factors here.

B is for behaviour

 

We do know that resource-poor people use their phones to make various kinds of calls. Some are essential and life-saving, others are to ensure that the family is well, or to check market prices if they are delivering produce and want to get the best prices. Many youths and adults are looking for jobs. (For more on these kinds of behaviours see note at the bottom.) The highest demand for services amongst low income people remains voice calls. However, airtime is sometimes traded for cash, remittances are sent through sending airtime and can be on-sold for cash, or a remittance is sent via someone traveling home and the migrant worker sends a message home to look out for the cash-carrying courier.

A useful approach that gives us understanding of how ICTs are used to improve people’s livelihoods is to consider the way in which people use phones, radio, the internet, television to strengthen their social networks, (social capital). Also how they can improve their skills, training and even education using any of the above (human capital); and gain access to market information, information about natural resources or financial information (market, natural resource and financial capital). These are the five forms of capital that resource-poor people rely on to make a living, and where they experience shortages in times of shock or disaster.

(see http://www.livelihoods.org/info/guidance_sheets_pdfs/section2.pdf).

C is for Cost

Nakaseke Telecentre, UgandaEven though the most popular prepaid units are the cheapest, and resource poor people will continue buying these cheapest units which allow them to make just a few minutes of calls at the highest rate per call, and some “call me” messages per day, the real cost of calls is normally borne by those who do call back. They might be the well-off urban dwelling family member, the employer, but not yet the government service call centre, the hospital service, or business call centre. Here are some ideas for e-government services. Poor people cannot afford the expense of holding on while waiting for a response, but they could just leave their numbers and expect a call back.

Telecommunication services are still extremely high in Africa. The most basic reason is that the cellular companies get assymetrical interconnection agreements, it is usually more expensive to call a cell phone then a fixed line, and more importantly the fixed line operators in most African countries still enjoy the monopoly of voice calls. The cost of the Internet is also largely determined by the cost that the telco charges the internet service provider, the latter adding only a small margin. The most expensive access is satellite communications. Almost every square kilometer of Africa is covered by satellite communications, but governments either control the access or charge extremely high fees for services to bypass their telecommunications services, making this the most expensive model.

Masyoi Vilage CantennaeWe have supported projects that seek other ways to aggregate the cost of those internet connections, especially the high cost of satellite connectivity and through sharing the signal with others using a wireless access point. These WiFi signals use the least cost interventions, such as DIY “cantennae” enable several users and especially rural NGOs, households, schools and clinic to gain access to the signal and to share the costs. Some satellite and some leased line services can cost community projects, access points or clinics between R4 344 and R7 240 (US$600 and $1000) a month. See www.fmfi.co.za

D is for digital content and open access

When referring to the cost of owning a computer, connectivity, the software and length of use that the hardware and software make possible, the term Total Cost of Ownership is useful. Consider that all content, not only the dialup cost, is costly. One of the ways to further lower the cost of access is to choose intellectual property rights that allow the author to share, ask for attribution, allow for remixing, sharing any improvements back with the author and others who would be using it, allowing one to generate an income or not from it. This is choosing a particular kind of intellectual property approach that gives the author and user more rights than the normal default restrictive copyright procedures. We have supported the Creative Commons getting established in South Africa and promoting the use amongst other early adopters.

See http://www.commons-sense.org/index.htm# for several of the tools available to create open access content. We also support the use of free and open source software which makes a whole lot of sense for a global community of developers constantly improving and a whole lot of users constantly proving the use.

See www.OpenMRS.org or www.AVOIR.uwc.ac.za.

E is for efficiency

Finally, in this ABC of ICT4D, the most compelling reason for governments and NGOs to be using information and communication technologies is that they can deliver their services more efficiently. Consider the benefit to those patients on lifelong Anti-retroviral therapy whose files are kept electronically. This means every visit to the clinic or complication that needs to be reviewed by a doctor, the patient’s record is up to date, the vitals have been monitored and entered, any drug interactions, reactions or other symptoms are monitored. Those health services that are able to maintain this kind of service are able to ensure better quality of care, improved management information systems, better reporting about the effects of the treatment on patients and the management of the treatment project-wide, province-wide or nation-wide.

PDA for patient monitoring and electronic medical recordThe household surveys that are conducted to establish the burden of disease in any region or country, facilities-based information in a health system, or extension of microcredit loans are more efficiently managed on handeld computers. They may be synchronized or dialed up from remote rural settings to the data-base management servers held in capitals. Here the data is managed and analysed, processed and fed-back into the field or to national or international level decision-makers.

PDA forms software for electronic medical records, survey toolsActually the algorithms and protocols that can be coded into most forms-based software can provide the fieldworker with enough feedback to enable that fieldworker to manage patients on lifelong treatment, manage loan portfolios, give advice in remote settings and when smart phones get cheaper, this could all happen in real time.

ICTs are for Development?

Are you convinced? Cell phones are not mere luxuries or fashion items, they are tools in the employ of people development. If we consider Maslow’s hierarchy of needs the idea of communication fits snugly into the basic human need for security. There is no longer a debate about whether communications infrastructure and gaining access to it fulfills a basic human need. The challenges we face in development are improving access, decreasing cost of access and total cost of ownership, access to open content and open source software as well as making use of all of this to improve health and education services in resource-poor countries, and several attendant services that can improve livelihoods, such as agriculture, primary production in order to improve our economies.

Governments fear liberalizing their telecommunications markets because they fear loosing the goose that lays the golden egg. What they don’t realize is that cheaper and improved access to communication spawns many, many golden geese!

The slideshow is available at http://www.slideshare.net/kdiga/idrcpeople-media-i-t-22-jun07-ict4d/

Some resources. See: “Towards An African e-Index: SME e-Access and Usage in 14 African Countries” 2006 http://researchictafrica.net/modules.php?op=modload&name=News&file=article&sid=518 as well as at the “Towards an African e-Index: Household and Individual ICT Access across 10 African countries” 2005. http://researchictafrica.net/modules.php?op=modload&name=News&file=article&sid=504.

Both of these research reports were funded by the International Development Research Centre http://www.idrc.ca/Acacia or www.idrc.ca/acacia

August 1, 2005

The story of community struggles and public health delivery of antiretroviral therapy in the Free State Province of South Africa

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Heloise Emdon, August 2005

The room was filled with the powerful voices of at least 40 women and a few men singing and swaying, stomping and inflecting to the words of their composed songs. They were all on antiretroviral treatment (ART) and their clinic sister Soodie had motivated them to tell their stories. The volume was rising, they included a little step accompanied by the movement of their hands saying in Sotho: “Away with those people who are gossiping about us, we are surviving because of the antiretrovirals (ARVs) and we know that they work!” And again, to the rhythm of the toyi-toyi (the freedom dance that became famous in the struggle against Apartheid) they shout, “Viva ART! Viva!”. It usually is “Viva ANC! Viva!”

We are in the Phomolong clinic, 200kms north of Bloemfontein, in the Northern Free State town of Henneman, part of the once-productive Gold Fields. This is the middle province of South Africa, about the size of Uganda with large commercial farming and mining the mainstay of this economy. But unemployment is at an all time high in this complex of gold mining towns. The strong South African currency (ZAR) has driven down the profits that marginal mines can make on the international gold market. Several of these mines have closed down, leaving economically dormant communities marginalised from South Africa’s otherwise vibrant economy. Migrant workers have left the mines, and social dislocation is evident. The Free State province also has the third highest HIV infection rate in the whole of Africa. Unemployment, poverty and lack of opportunities for generating an income are the calling cards of this community, but they warm us with their welcomes for these are international visitors who are coming to hear their testimonies of how their outlook on life has changed.

Myriam “Stompie” Mhothlo (stompie means short) comes forward to say that she followed the advice of the clinic sister, got herself tested on 19 July 2004 and by 7 Oct she was on anti-retroviral treatment: “I encourage people to come forward and to be tested. Whether you are infected or affected, we are just like every body else, we are affected by this virus which cannot talk. We are fortunate that our government is giving us ART for free. Viva ART! Viva!”

“Our community is afraid to be stigmatised, the older people don’t come forward because they are frightened”. Funerals are held without the cause of death ever being made known. People do not talk, there is a culture of fear, stigma, and then you die!

The trip:

I am travelling with IDRC-ESARO regional director, communications officer, Tosin Oyekanmi from the SA satellite office and we are accompanied by the head of CIDA in South Africa, and the CIDA HIV programme officer in South Africa. Our project partners are the University of Cape Town’s Lung Institute which has focussed interventions into lung health, the largest killer in South Africa, and the Medical Research Council (MRC). The MRC developed a patient profile system, initially using handheld applications software on Palm handheld computers and now the Free State government has implemented a PC-based network which puts a PC into the hands of the data capturers in every remote clinic, referral hospitals and provincial hospitals.

This is a complimentary project of the GEH Palsa (Practical Approach to Lung Health in South Africa) PLUS second phase which has provided colourful guidebooks to assist the professional nurses, the first line of contact with HIV patients, to diagnose the illness and the opportunistic infections.

We spend a day in the field visiting a primary health care facility, the clinic in Phomolong, a typical rural clinic where the initial assessments are made, the blood tests done, the three week counselling to prepare patients for the complex use of these lifelong drugs, the anti-retrovirals and then they are referred to the treatment centres, or regional hospitals, where the patients see a doctor, get their first prescription, after which their contact will be mainly with the local clinic nurse. We visit the regional hospital in the town, Welkom, called Bongani Hospital where doctors explain how they receive referred patients from the Clinics and prescribe the ART drugs, then monitor them six monthly. The drugs are dispatched monthly to the rural clinics.

A patient profile system seems like such an obvious and necessary health management system but we learn that amongst the nine South African provinces, this is the only province that has one. Free State also happens to be a province that maintains an interactive website where the quarterly reports are available online (the ARV portal is available here.) And this has come with a price. Not a word of congratulations for the first province that has been able to give a comprehensive monitoring quarterly report of how many patients have been screened and how many on the system.

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Instead, from the single page management report (above) that can be drawn from the relational data warehouse, developed and housed in the Medical Research Council with IDRC (Acacia and CA) funding. Policy makers like Dr Ronald Chapman, Executive Manager Health Support, Free State Department of Health can draw a report for the MEC, deliver it as a quarterly report to national Health Department.

When the MEC Mr. Sakhiwo Belot meets us and talks about the powerful health information management system (HMIS), he has access to his concern is, as he reads down the right hand column of the one pager the number of patients who died since they entered the system (see insert flow chart below and note the the right hand column records the deaths ) from testing through to being on treatment. When meeting in coordinating meetings with provincial peers, this province has to answer the vexed and highly charged political question: “Why did the people on the treatment die?”. He reflects: “did we kill them?”, This challenge is wrapped in the ambiguity of the South African policies towards HIV/AIDS and anti-retroviral treatment. It does not acknowledge that this provincial has created the only electronic central record system, linked to the population data base to validate death registration. It does not acknowledge that the Free State Province is committed to ensuring lifelong treatment and follow-up by name of each patient. It does not acknowledge that the integration of patient information and laboratory reports have enabled the surveillance of drug resistance, which could threaten all efforts of prevention and treatment.

South Africa’s policy on antiretroviral treatment was delayed by several years of political positioning around the belief that HIV does not cause AIDS. President Thabo Mbeki, his health ministers and a series of alternative health advisors took this oppositional position. What emerges from the complex of research that is being undertaken by GEH partners is that these views are still variously held by a range of political figures, sending out ambiguous messages about the ART.

What the Free State’s patient profile system has been able to establish in a very systematic way is that when a patient enters the system that they are followed up properly. Drug interactions need to be monitored and the research team has also been able to track through routine blood sampling, adverse drug reactions. These patients become life-long partners with the primary health care nurses who could be the “barefoot” doctors in the affected communities. They stand proxy for the very few and by now overstrained medical officers in the provincial hospitals who need to do diagnose the patients and prescribe and have follow up visits with these patients.

The Free State system, after only 18 months of roll-out has 2800 patients on the drugs and have registered only 6825 (in August 2005, the rollout started in May 2004), and know they are only touching the tip of the iceberg. They believe that there are 30 000 patients that qualify with CD4 counts below 200 and should be entering the drug therapy.

One of Bloemfontein’s largest hospitals, National Hospital, has had to call a halt to seeing new HIV patients referred by the clinics, because they receive 1000 patients a month and have reached the limit of how many patients the three doctors can handle. There are 13 medical officer posts vacant in the hospital and there is only one pharmacist to count the drug supplies that need to be dispatched to the clinics. They are also running out of safe storage space for the drugs. The system is creaking under the regulations that hamper the flow of patients into the referral system to doctors at the hospital level.

In most other provinces the state is simply handing out ART without a monitoring process. The state seems to have interpreted this as too big to handle which is partly responsible for the intransigence on the whole ART issue. Undue influence has also been placed on researcher in this field to withdraw publications in reputable medical journals to appease government.

Post Script April 2006:

I put off sending what I have written in August 2005 as a trip report: Its seems a difficult task to manage a programme where the policy and political statements are at tangents with each other. I am in need of an internal debriefing: I cast around for an understanding of the ambivalence I experience with patients declaring they have claimed their lives back from the dead thanks to the antiretroviral therapy, our support of the programme, and yet the continued ambivalence in the minds of the provincial policy maker as he defends his department to his colleagues. I find the book “Witness to Aids” by Supreme Court of Appeal Judge, Justice Edwin Cameron, who is described by Nelson Mandela as someone ‘living with AIDS himself, his witness and activism has shown the hallmarks of great bravery and principle’. He writes in the chapter “The tragedy of AIDS denialism in South Africa”:

Cameron recounts through a personal history, his public stance on being gay and HIV positive, how ART changed his life expectancy and quality of life and how he continues to work. His book describes the struggles in South Africa that other Africans, in particular the Treatment Action Campaign took, on the issue of Antiretrovirals including court action against the State. “The denialist shadow seemed to loom large behind the government’s resistance. In court papers and in arguments before the courts, the government justified its refusal by claiming the drugs were toxic – a tenet central to the entire conspiratorialist theory of the AIDS denialists.” P 116

“President Mbeki has never publicly stated that this view is that HIV does not cause AIDS. What he had done is to ask how a virus can cause a syndrome……and regards the syndrome of immune collapse afflicting central and southern Africa as a disease ‘of poverty and underdevelopment’, rather than a viral syndrome for which the first line treatment must be antiretroviral medication.” P117

“The object of those casting doubt on the conventional causal theory of AIDS may have been to save African from the supposedly stigmatising effect of a Western disease model that seemed to imply that African’s sexual conduct led to distinctive disease patterns on this continent. Yet the effect of their dissident stance was to re-stigmatise the disease.” P 118

22-24 October 2006
Follow-up visit with Industry Canada and theCanada Fund for Africa programme officer who came to monitor the Connectivity Africa funding, and on invitation, Councillor CIDA South Africa and I also invited the Meraka Institute and Meraka Open Source programme and centre.

This project visit is directed by Chris Seebregts of the Medical Research Council (MRC) of South Africa who is the project leader that developed a central data repository to collate data from the start of the Free State Department of Health’s treatment program. This included patient profile data of every patient testing and entering the treatment program in the Free State. In addition, the MRC also developed an innovative handheld application (PDA) to ensure that data was captured into the system from paper records before a comprehensive medical record system was implemented. Of the 26 000 patients registered on this system, approximately 5 500 are being treated. The province estimates it has 400 000 infected citizens. According to the data collected in the Free State, of those that started the treatment 75% are alive and in care and testify to these “Lazarus” drugs literally raising people from their deathbeds.. The results show that antri-retrovirals are extremely effective, as effective as in a developed country, but the treatment is not reaching enough people and many patients are dying while waiting for treatment.

We visited the Metsimahalo ART Clinic in Klerksdorp where me met a very animated Dr Grace Khoba who says the patient profile information cuts her time of recording patient data dramatically and gives her more time with the patient.

Pino Rampai is the data capturer and demonstrates how familiar he is with the new Meditech system, a proprietary health management information system bought by the Free State department of health and rolled out more rapidly than initially expected by the MRC project.

Although it is an online system, Meditech relies on real-time communication which are not excellent in this rural province. Any changes to the proprietary systems requires a team of US-based software engineers to adapt the system and this is extremely costly. For instance Meditech did not register deaths because it was considered by its developers to be a medical system to assist with getting sick patients healthy. Writing and linking the system to death registration and clinic records required a whole module development for customisation to the Free State which was extremely expensive.

We then visit Refengkgotso Clinic in Denysville, a small town on the banks of the Vaal Dam. This is one of two clinics that still retain the use of the handhelds initially implemented before the Free State had a wide-area network and Meditech system. The data capturer, Isaac still captures the nurses completed forms on his Palm top and transmits the information regularly throughout the day to the central database where the relational database can run regular reports for management information.
The next day we meet Dr Ralph Nkiwatiwa of the Bongani Hospital in Welkom and his team of head male nurse, locum doctor, nurses and volunteer helper – a young woman from the area who has not found a job since graduating. Dr Nkiwatiwa is one of the key surveillance doctors in this regional hub doing early surveillance of drug resistance, sending the majority of specimens that are being genotyped for sequencing the virus. Here the project is collaborating with Dr Casells doing the genome typing to enable the development of a bank of traceable blood samples that can be tracked when resistance in a single patient is detected. The major concern here is that the C-virus in Africa is already a mutated virus following the A + B viruses prevalent elsewhere in the world.

Dr Nkiwatiwa has also started encouraging nurses who are using the PALSA+ materials to teach patients how to improve their nutrition and health while they await treatment. The nurses are also doing early detection of TB so that the TB drugs can be administered which then delays the introduction of Anti-retrovirals by three to six months, but this is an important progression for the treatment. Dr Nkiwatiwa was part of the team that the Lung Institute consulted during the designing of the form that nurses and doctors complete to develop the patient profile and use it for surveillance says his time with the patient is greatly increased because essential information is already completed on the forms when he gets to see the patient and he need not ask routine questions or search for important information from the laboratories for the patient.

handheld.jpgI note from conversations with Chris that Vanessa and Mpume are leaving the MRC, but not lost to the project, as they are going to work respectively for the UCT Lung Institute (to complete her PhD) and Mpume is going to work as a consultant, amongst others, for the consultancy that developed the relational database in this project of the Free State health system, linking the legacy systems through a Data Warehouse..

Our last stop is in Bloemfontein where we meet Dr Ron Champan, Acting Director General and Sr Portia Shaimatu previously head of the nursing college but now the exective manager in the Dept of Health and head of HIV-TB and STI infectious diseases. Chapman points out this is the only province that has attempted to get patient information online, for which they appreciate the research funding the IDRC provided, especially the palm top computers that were used before the department had its own computers in clinics and hospitals.

pda_man.jpg“It’s taken us time to get the system online, but if you want good data you need a system. It is not easy implementation, it can create backlogs for data capturers and then backlogs in the system.”

But the type of information they get out relates to trends, patients on treatment. This they validate through triangulating with the number of pills dispensed.

“We get bashed by our peers from other provinces. They say our data is lagging behind, but I think we have the foundation now for rapid growth of serving patients. On the other hand our statistics are more accurate. We are the only province that know the outcomes, other provices only put patients on the drugs. We know what is happening to those patients in the system.”

We later meet Prof Cloete van Rensburg, head of infectious diseases at the University of Free State medical school who is also part of the project who points out this is the first database of its kind in the world. It will also have a sustainable future because other researchers (Oxford Group studying immune response types and the WHO) are interested in it. Another important aspect of the data is that it is the only baseline set of data on such a large scale concerning the introduction of particular cocktails of the drugs being delivered across the board. Patients’ responses to the drugs and the surveillance enables a higher level of care.

The next phase of the project is about to be implemented, that is for nurses to get electronic feedback (such as laboratory tests of patients blood samples) for more rapid response and communication with patients. Dr van Rensburg will also be working with the STRETCH project to assist nurses to become initiators of the anti-retroviral treatment.

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