Physicians 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.
The 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.
Although 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.
The 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, 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.
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.
John 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.
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..
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
Nurlina, 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.
When 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.
From 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.
Ms 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.
