Field survey report for the Global South eHealth

Observatory

For the Mobile application

Angel NGONDE

April 2020

Kinshasa/DRC

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For one week, in early April 2020, while the Kinshasha population was living under the stress

of an aborted attempt of total confinement, but in partial confinement because of the Covid-

19 pandemic, I conducted interviews in the city of Kinshasa, capital of the Democratic Republic

of Congo (DRC), with 13 different stakeholders, including the application designer, the

partners (3 doctors and 1 Ministry of Health agent) and some users (5 sickle cell patients and

3 parents of sickle cell patients) about the Anemiapp mobile application, dedicated to

communication on the world's first genetic disease, called Sickle Cell Disease.

Context of Sickle Cell Disease in the DRC With a surface area of 2.345 million km², the DRC is the 4th largest country in Africa, with a

population of 95,784,841 inhabitants and is at the heart of the continent, sharing its borders

with 9 countries. To the North: CAR [Central African Republic], South Sudan; to the East:

Uganda, Burundi, Rwanda and Tanzania; to the South: Zambia and Angola; to the West:

Congo/Brazzaville.

Source: Wikipedia

Its population has undergone 3 depopulation movements. First with the wind of the black

slave trade in the East and in the West; during colonisation; and finally from 1996 to the

present day with the mining wars in the East of the country. As a result of these situations, the

DRC is sparsely populated relative to its size: 40 inhabitants per km2.

The population is concentrated on the highlands, in the savannah near rivers and lakes; the

north and centre of the country, the domain of the jungle, are almost empty. The rural

depopulation has filled the cities. After numerous wars within the country and with its

neighbours, this country in the heart of Africa was home to some 177,500 refugees and asylum

seekers at the end of 2007. They came from Angola, Rwanda, Burundi, Uganda and Sudan(1).

The largest urban areas are: Kinshasa, Lubumbashi, Mbuji-Mayi, Kananga, Kisangani and

Bukavu. The official languages are French and the 4 national languages are:

Kikongo, Lingala, Swahili and Tshiluba. The DRC is the most populous French-speaking country

in the world, ahead of France.

Generally speaking, there are many worrying social indicators: the infant mortality rate fell

from 12.4 % in 1990 to 11.2 % in 2011, the maternal mortality rate rose from 800 deaths per

100,000 live births in 1990 to 2,000 deaths per 100,000 live births at present, life

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expectancy rose from 45.7 years in 2000 to 48.7 years in 2013 compared to an African average

of 55 years, access to basic health services is less than 26%, and nearly 3/4 of the population

lives below the multidimensional poverty line(2).

Malaria is wreaking havoc in the DRC. In addition, once-eradicated diseases such

as Trypanosomiasis, Leprosy and the Plague have re-emerged, and the HIV/AIDS pandemic

affects 3% of the population aged 15-49. The figure could rise to 20-22% in the eastern

provinces where there are still some problems. According to the latest estimates,

approximately 750,000 children have lost at least one parent to the disease(3). This situation

has been going on for decades. We are witnessing an epidemiological transition with the

increase in non-contagious diseases such as diabetes, cardiovascular and renal diseases,

cancer but also sickle cell disease.

The first genetic disease in the world, Sickle Cell Disease is characterised as a rare disease or

one that people are unaware of. The DRC is the 3rd country in the world and the 2nd in Africa

to bear the socio-economic burden of this disease after India and Nigeria (4). It has 20 to 30%

of S (heterozygous AS) trait carriers, a birth rate of homozygous newborns (SS) of about 2%

and a mortality rate of about 50 to 75% before the age of 5 years old (5).

The fight against this disease in the DRC is characterised by:

- the difficulty in obtaining accurate figures due to the national statistical context;

- the absence of large-scale action undertaken by the State despite the prevalence of

the disease being around 30% as in the case of HIV, TB, Malaria, etc. ;

- the high cost of care ($1000 to $2000/illness/year);

- the high cost of opportunities including schooling and employment with difficult

incomes, stigmatisation, etc.;

- social injustice is high (the less affluent have lower expectations of success);

- the approach to this complex disease is hesitant, few health workers are trained or

make a correct diagnosis;

- the infrastructures already lacking in general, must address the specificities of sickle

cell disease (transfusion, nutritional, surgical, orthopaedic needs, etc.);

- pregnancy is a high-risk condition for sickle cell disease (20 to 30% of deaths before or

during childbirth);

- The population is often poorly informed (or normalises the issue);

- The psycho-social dimension is often neglected and the care-giving relationship is

often reduced to material aspects;

- The human and community dimensions are often neglected.

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Origin Mr. Arnold Wogbo, the designer of this Anemiapp

application, is a technical engineer trained at the Institut

Supérieur des Techniques Appliquées (ISTA) [Higher

Institute of Applied Techniques] in Kinshasa. When he

finished his studies in 2008, he moved into the field of

communication and production.

Thus, in collaboration with Jesuit missionaries from Central

Africa, he is participating in the creation of a documentary

entitled: “Des Enfants comme les autres” [Children like the

others], which tells the daily life of street children in the

Monsignor Munzihirwa Centre, a shelter and reintegration

centre for street children, located in the Matonge

neighbourhood in the capital Kinshasa.

A year later, he met a Belgian missionary named Henri de la Kethulle from Ryhove. He, a Jesuit

Father, who for several years now, has been very devoted to caring for people living with

physical disabilities in the town of Kikwit, became passionate about sickle cell disease when

he discovered that many of these physically handicapped people were also sickle cell

sufferers. Once in the city of Kinshasa, he got involved in the fight against Sickle Cell Disease

with his association Croisade Nationale Drépanocytose (CND) [National Crusade against Sickle

Cell Disease] It was then that he offered Arnold the opportunity to work with him in his

organisation in the field of Communication.

"... My meeting with the Reverend Father Henri de la Kethulle has shaken my perception of sickle cell disease... He was so passionate about Sickle Cell Disease that he wanted to know everything about the disease and those suffering with it. This is how he created a space of

expression for sickle cell patients, their families and the nursing staff... We were able to produce several television programmes including: "Mwinda na Maloba" which means "Light and Words"... And together we have published several books on Sickle Cell Disease including

“la Boîte à Images sur la drépanocytose” [The Image Box on Sickle Cell Disease], “la Drépanocytose pour les nuls” [Sickle Cell Disease for Dummies], “Le cristal et d’airain” [The

crystal and bronze], “ Drépanocytose, Tout l’Or du Monde” [Sickle Cell Disease, All the Gold of the World] ... ”

Mr. Arnold WOGBO

But this didn't last very long because only the minority of Kinois people have the privilege of

being able to read. In addition, the difficulties of access to electricity mean that there are

fewer television viewers to follow the information broadcast, particularly that relating to sickle

cell disease.

But with the digital age, mobile phones, aided by the popularity of social networks, are

increasingly accessible to the population and can therefore serve as channels for transmitting

information on sickle cell disease.

Photo 1: Mr. Arnold WOGBO, the designer of Anemiapp

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In 2016, Arnold designed this mobile application on sickle cell disease, which he named

"Anemiapp", inspired by the popular "WhatsApp" application, which came from the English

expression "What's Up". He took part in the "RFI APP Challenge Africa" competition, launched

by the French radio station RFI. Anemiapp was selected as one of the 10 best health

application projects for Africa.

In 2017, Arnold Wogbo launched his startup called "GenitySarlu". The following year, he took

part in the Orange telecom operator's competition called "Concours Orange de l'Entrepreneur

Social” [Orange Social Venture Competition].

The Anemiapp application was awarded as being the best social project in the DRC. He then

went on to qualify for the Orange Social Venture Prize in Africa and the Middle East (POESAM)

to be named the 3rd winner in November 2018 in Cape Town, South Africa.

In 2019, Arnold was invited to the 14th International Congress of Sickle Cell Disease in

Strasbourg, France by Dorys Association to present his application. Thus, in order to enable all

sickle-cell patients, caregivers and the Congolese State to benefit from this digital tool for the

management of Sickle-cell disease, he has entered into a partnership with the National Sickle-

cell Disease Control Programme (Ministry of Health) and the REZODREPANO SS, which brings

together associations of sickle-cell patients.

In addition, to facilitate access for all segments of the population, particularly those who

cannot afford a smartphone, a partnership is being concluded with the telecommunications

operator Orange. This will allow those with a standard phone or those who do not have the

means to pay for an internet connection, to receive SMS messages about health advice and

where they can find their treatments (blood bags for a blood transfusion, medicines and

vaccines).

Photo 2: Arnold Wogbo and his employees win the Orange Social Venture Prize with Anemiapp

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Technology Arnold Wogbo describes Anemiapp's technology as follows:

“...This application uses the Ionic and Cordova technology including the Angular framework, Typescripe, html, Css, Xml for configuration. Data base: Google Firebase requiring

configurations. Type of language: noSql. Password fields hasher in bcrypt. Bcrypt being a password hashing technique that Anemiapp uses to enhance the security of passwords..."

The data is private and is not shared with any entity, in order to preserve the Confidentiality

of the beneficiaries of the application.

How does Anemiapp work?

1. The application is downloaded from Playstore.

Figure 1: Operation diagram of the application

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2. Once downloaded, the "Anemiapp" logo appears. By clicking on

it, you have three options: Patient, Doctor, Followers.

The user chooses the option applicable to them, i.e., whether they

are a sickle cell patient, a doctor or simply a follower. (NB: for

doctors, only doctors validated by the National Sickle Cell Disease

Control Programme [PNLCD], will be taken into account).

3. The user fills in all the information requested in the

registration form and creates his or her account.

4. The user has access to his/her profile and to the various

sections available, including published health regulations, news

about blood transfusion, drugs, vaccines, screening tests and

events related to sickle cell disease. Also he/she can create or

access dialogue groups, chat with his/her doctor, etc.

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What are the health benefits? Based on the reactions of the different categories of stakeholders interviewed, we illustrate

the health benefits using excerpts from our interviews.

To begin this series of interviews, I met with the designer of Anemiapp, Mr. Arnold Wogbo, at

his home:

“I designed this mobile application to facilitate contact between sickle cell patients and their doctors, especially those living remotely. Because in our country, there are very few doctors

who know how to treat sickle cell disease... Also, according to these doctors, there is a blatant difficulty in finding the right drugs, especially Hydrea. This is why, by identifying drug

supply sites, Anemiapp will help solve the problem of availability of safe and good quality medicines..."

I then met one of the officials of the National Sickle Cell Disease Control Programme, Mr.

Pitchou LUKISA, Head of Division in charge of monitoring and evaluation, who explained to us:

“...In the digital age, Anemiapp is a tool for remote awareness and care. As a Programme, a technical body of the Ministry of Health, it allows us to digitalise our work by providing us with data in real time. To do this, it must incorporate the location of health facilities and

health workers according to their Health Zones so that we can have an idea of the situation of the disease in every corner of the country... ”

Photo 3: Sickle cell patient interviewed on the Anemiapp application

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I was then able to exchange with three doctors, two of whom work in the capital, Dr. Blaise

BOKIMELA (Doctor at the Sickle Cell Disease and Chronic Diseases Management Unit

(UPEDMC)) and Dr. Cadet BIZANGI (General Reference Hospital of Makala) and one working

in the province of South Kivu (Dr. Nash MWANZA). The interview with Dr. Nash MWANZA was

conducted by telephone. From their comments, we note that the Anemiapp application can

be used as an information and training tool on the disease; to create a database to better

manage their patients by ensuring holistic care; and to facilitate exchanges of experience

between caregivers1.

“...many of the sickle-cell patients we treat have repeated attacks due to a lack of respect for basic rules of hygiene, commonly known as the "Golden Rules", or, conversely, they do not

respect routine consultations and only consult a doctor during attacks. Thus, this "Anemiapp" application, through an alert message sending system, will remind them of these golden rules

and to respect routine consultation appointments, necessary to prevent attacks... ” Dr. Blaise BOKIMELA (UPEDMC)

“ ...In addition, Anemiapp allows us to manage our patient database, to exchange information about the disease with other expert colleagues and to do so, it will be able to

serve as a tool for our continued training in the treatment of sickle cell disease... ” Dr. Cadet BIZANGI (GRH Makala)

Three parents have agreed to answer our questions: Ms. Yvette NDOMBASI, an executive in a

local oil company, Ms. Arlette MUNUNGA, a sickle cell disease educator and Mr. Blaise

OWANDJI, an executive in an automotive company. For them, Anemiapp makes it possible to

promote access to information for everyone, particularly for the less well-off, provided that

they have access to the Internet, but also to identify sites for screening for the disease.

“I am the parent of a girl who died from sickle cell disease, this situation led me to raise awareness about sickle cell disease among other parents. Among the difficulties encountered is not only ignorance, but the lack of a source of information. Anemiapp allows everyone to

access information on sickle cell disease and it provides this information to a large number of people... but the information has to be translated into four national languages, namely

Lingala, Swahili, Tshiluba and Kikongo... ” Ms. Arlette MUNUNGA

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Photo 4: Sickle cell patient interviewed during their routine consultation

I continued my interviews by going to the consultation room to meet the sickle cell patients

during their routine consultations. There I was able to interview two men (one a musician and

the other an IT specialist) and three girls: the first during her routine consultation, the second

at her workplace and the third by telephone, due to the confinement measures. In their

opinion, we believe that Anemiapp makes it possible to establish close contact with healthcare

providers, identify supply sites for quality medicines and blood products, identify reliable

healthcare organisations to treat this disease, obtain information on the various events

relating to the disease, facilitate the exchange of experiences between patients and provide

tools for raising awareness of the disease.

“...This is the first time I’ve seen a mobile application on sickle cell disease. Anemiapp allows me to easily stay in contact with my doctor, to ask them questions about my health,

especially when I'm not having an attack... ” Mr. Hardy BAKOLE, sickle cell specialist and IT specialist

"...we need to add the possibility of sending media, because sometimes you can have images to send if you can't see the doctor at that time...you also need to have alerts on

appointments or vaccine reminders.... ” A boy with sickle cell disease, artist musician

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Photo 5: Registration for screening after Anemiapp presentation, January 2019

Photo 6: Mass screening by the REZODREPANO SS after presentation of Anemiapp

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This application, the first of its kind, is of interest to the country because it collects accurate

data on the disease, it identifies sickle cell disease sufferers, it ensures the remote

management of sickle cell disease in a continental country, it increases the rate of screening

for the disease, and it promotes permanent exchanges between experts on the disease, as

well as the digitalisation of work to obtain data in real time. It also popularises and updates

information on the disease taking into account the country's context. It serves as a tool for

research and continued training for caregivers, as well as for communication to the population

in order to change behaviours for people at risk by increasing the rate of premarital tests.

“ ...In short, it has an influence on the practice of certain professions and on the lives of patients through the creation of specific platforms for carers, health organisations,

pharmaceutical companies or even patients...”. Dr. Nash MWANZA

What is the economic model? The cost of treating sickle cell disease is high, representing an average expense of $1,500 USD

per year. In fact, an attack requiring hospitalisation for at least 3 days costs an average of

$350. In the absence of regular monitoring, a sickle cell patient can have a minimum of 2 to 3

consultations per year; the imaging check-up (Chest X-ray and abdominal ultrasound) and the

biochemistry check-up (Transaminase and renal) are added to this cost. In comparison, routine

consultations cost an average of $30-$50 per year (including consultations and haematological

check-ups). It is recommended to attend 4 to 6 consultations per year. The cost of essential

drugs is estimated at $5-$35 (with Hydrea). It has been found that regular and well-adapted

care can drastically reduce the number of attacks.

"While most sickle-cell patients come from poor families, it is necessary that this application does not put a strain on the finances of the sickle-cell patient and therefore for the moment

the economic model is based mainly on subsidies and donations.” Mr. Arnold WOGBO

Photo 7: Drs Amélia NZILA and Blaise BOKIMELA (the Sickle Cell Disease and Chronic Diseases Management Unit team) and Ms. Rose KOKOLO (secretary of the REZODREPANO)

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Development and indicators Although designed in 2016 to participate in the RFI competition, it was in 2018, following two

Orange competitions, in the DRC and Africa respectively, that a collaborative partnership

would be signed with the telecommunications operator ORANGE for the Anemiapp

application, and validated by the PNLCD in 2019. The political environment, very turbulent

and tense in the DRC during 2018, did not allow the monitoring of this mobile application to

start. Thus, Anemiapp would not see the piloting phase of its monitoring until 2019 for a

period of two years, explains Arnold Wogbo.

Here are a number of indicators of this monitoring:

Country DRC Province Kinshasa

Number of

districts

4 State of progress Pilot phase

Start 2019 End 2021

Number of beneficiaries Frequency of use

Month: Freq Sex

F M

Freq/day Freq/month %

January 2020:

208

112 96 208/day 6448/month 100%

February

2020: 266

137 129 200/day 5800/month 75.2%

March 2020:

302

118 144 264/day 8184/month 87.4%

Number of doctors

January

February

Mars

8

11

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Photo 8: Arnold Wogbo explains the Anemiapp Application to his colleague (Patricia MPONDA)

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“The number of beneficiaries could very quickly explode, because there is no competing application in the DRC and even in the whole of sub-Saharan Africa, doctors would be

overwhelmed and inundated by the demands of patients (100,000 sickle-cell patients and 3 million AS in the city of Kinshasa), i.e. 1 doctor for every 1,000 SS sickle cell patients. This is

why the Ministry of Health, through the National Sickle Cell Disease Control Programme, has deemed it useful to draw up "terms of reference for the extension of the Anemiapp

application", in which the ussd application developed by the telecommunications operator will be used to enable beneficiaries who cannot contact a doctor remotely due to the doctor’s overload or the lack of means to buy a smartphone and/or an internet connection, to obtain

all health advice and all information related to their care by SMS”. Mr. Arnold WOGBO

Note that the expected result at the end of the monitoring is: No. of sickle cell beneficiaries 90,000 (90%) of the sickle cell patients of Kin

Number of electrophoresis test beneficiaries 240,000 (2% of Kinshasa's pop.)

Number of advice beneficiaries 35,000 (35%)

Number of healthcare providers 100

It should also be specified that with the delivery of the ussd programme being delayed by the

telecommunications operator due to the Covid-19 pandemic, the monitoring period could be

extended.

What challenges have been encountered? In the opinion of those interviewed, the difficulties encountered include the following:

- An insufficient number of doctors able to care for patients;

- The challenge of expanding the tool in every province in the country;

- The accessibility of populations to mobile phones;

- The frugality of internet connections;

- The content and functionalities of the tool were considered insufficient (access to

photos and videos, information on the location of the health facilities that the doctors

come from, no translation into national languages, etc.)

"...The number of doctors in relation to the number of patients is still too small. There is a risk that doctors will be overwhelmed by requests from patients. It should be noted that there are

about 100,000 sickle cell sufferers in the city of Kinshasa and just under 100 doctors specialising in the treatment of this disease... ”

Mr. Arnold WOGBO

“...Expanding this across the province will also be hampered by the reduced number of healthcare personnel involved in the treatment of sickle cell disease.... ”

Dr. Nash MWANZA

"...Poor patients do not always have access to smartphones, and so messages or application templates must be designed for cheaper phones..."

Ms. Yvette NDOMBA

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“...sometimes you can develop an attack at night or you can be so far away that you can't reach your doctor quick enough, if only you could even send them a message or a picture. But

I find it impossible to send photos, videos and voice messages..." Mr. Hardy BAKOLE

"... one fact to report is that health facilities and doctors are identified without reference to their health zones. For us at the National Sickle Cell Disease Control Programme, it would be

useful for us to have access to this information... ” Mr. Pitchou LUKISA

"...for me, the difficulties encountered include how slow it takes to download and to chat, as well as the lack of headings and insufficient instructions...”

A sickle cell patient

“...we find that there are no scientific publications and few reported scientific events..." Dr. Cadet BIZANGI

" ...with no translation into national languages, it is sometimes difficult for us to understand certain technical terms and this may affect understanding or cause confusion when raising

awareness...however, we can always use it as a reminder...” Ms. Arlette MUNUNGA

What are the objectives of Anemiapp? The main goal is to improve the quality of communication during the treatment of sickle cell

disease both in Kinshasa and throughout the DRC.

The Anemiapp mobile application has been developed to enable:

1. Permanent monitoring of sickle cell patients by their caregivers

2. A reminder of the health rules to be observed to avoid the occurrence of attacks.

Health regulations and advice must be followed daily by sickle cell sufferers to avoid

attacks from occurring, which are the main cause of death.

3. Publication of information on consultation times at health centres and registered

doctors on the application. Sickle cell disease is a chronic disease that requires regular

meetings with doctors. Sickle cell patients and their relatives have access to the

doctors' consultation times and addresses on their telephones.

4. Information on the availability of treatment: Sickle cell patients regularly need

medication, vaccines and blood bags for blood transfusion. Anemiapp provides sickle

cell sufferers and/or their relatives with the names and addresses of approved health

centres and pharmacies, registered in the application, where they can find their

treatments.

5. Information on locations and times of screening and electrophoresis testing centres.

Information about where people can do the electrophoresis test is available in the

application.

6. Possibility to converse by message, blog. It is possible for sickle cell and non-sickle cell

patients to chat.

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7. Elaboration of statistics. Accurate data and statistics on sickle cell disease patients by

area, city, age, sex and country.

For Arnold Wogbo:

“The Anemiapp mobile application has been developed to enable caregivers to permanently monitor sickle cell patients: doctors can monitor their patients remotely through almost

regular communication. But also patients have the possibility to maintain close contact with their caregivers through remote advice given during attacks"; ...

Arnold Wogbo continues

“Information about where people can do the electrophoresis test is available on the application. ;... Both sickle cell patients and non-sickle cell patients have the possibility to

exchange messages or chat through a blog... Elaboration of statistics through the knowledge of accurate and statistical data on sickle cell disease patients by area, city, age, sex and

country."

What support and possible partnerships are there for Anemiapp? After various interviews, it appears that Anemiapp's current needs are twofold: technical and

promotional.

On a technical level, the application needs to be improved by adding certain modules or

headings, in particular those that ensure that data and information on the disease is updated,

the use of photos and videos, and the possibility of listing the various participants according

to their corporations, localisation and identification of organisations and healthcare personnel

according to their health zones, translation of advice into four national languages, sharing of

patients' experiences, adaptation of modules according to the type of phone, downloading

speed, more information on events (meetings, training, etc.) and respect of confidentiality.

On a promotional level, it must set up the extension plan involving the main partners, namely

the telecommunications operator, the National Sickle Cell Disease Control Programme and

the REZODREPANO SS.

The Pierre Fabre Foundation could help on both fronts, as the Anemiapp project has been in

existence for nearly four years but suffers from a lack of funds for the implementation of its

extension plan.

Anemiapp addresses a communication issue on a disease that has a high prevalence in sub-

Saharan Africa and particularly in Central Africa, this initiative can be expanded in other

countries in the sub-region suffering from the same problem. For this to happen, it must be

correctly implemented in the DRC, which is a mainland country. The Pierre Fabre Foundation

can help to develop this business model and test its services.

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Photo 9: Anemiapp's partners: GenitySarlu, REZODREPANO SS with Sickle Cell Disease and Chronic Diseases Management Unit at the presentation of the application and mass screening in January 2019

Conclusion In the digital age, Anemiapp is the first initiative of its kind in the DRC, i.e. the first mobile

application that focuses on improving communication in order to provide treatment for Sickle

Cell disease. It comes in response to problems related to:

➢ Ignorance of the disease from both healthcare personnel and the general public;

➢ Close communication between the caregiver and the patient by guaranteeing holistic

care;

➢ Geolocation of health facilities specialising in treatment of the disease, distribution of

quality blood products, pharmacies for the availability of quality medicines and

healthcare personnel recognised by the Government.

This pioneering project is promising because it ensures close treatment of a disease that is not

well known, a disease that is in fact an issue in almost all the countries of the region. There is

indeed room for expansion if its implementation in the DRC is successful.

Bibliography

1. World Refugee Survey 2008 [archive] published by the American Committee for

Refugees and Immigrants (U.S. Committee for Refugees and Immigrants [archive]).

2. The DRC at the bottom of UNDP's Human Development Index [archive], Le Monde

[French daily newspaper] 15 March 2013.

3. African Economic Outlook, DRC 2005

4. Piel, F.B. (2017) "Sickel Cell Disease". The new England Journal of Medicine.p. 1561-

1571

5. WHO. (2006) "Fifty-ninth World Health Assembly A59/9 Item 11.4 of the Provisional

Agenda".