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18Dec

CIPESA Joins Call Urging Content Platforms to Share Data with African Elections Researchers

Author CIPESA Posted on

Statement | 

The Collaboration on International ICT Policy for East and Southern Africa (CIPESA) has joined  over fifty media and research stakeholders from across Africa in calling for social media platforms to give equal treatment to Africans in line with what is being offered to researchers in major jurisdictions outside the continent. This call is based on the urgent need to monitor and formulate joint mitigation responses to disinformation and hate speech, given the elections in nearly 20 countries in Africa over the course of 2024.

The stakeholders making this call for parity in data access were brought together in Cape Town, South Africa, in November 2023 by Research ICT Africa (RIA) and International Media Support (IMS). 

The discussions by these stakeholders, coming from 11 African countries, noted that platforms provide space for public discourse, and serve as an important avenue for both access to, and sharing of, elections data and information. But the stakeholders noted that the platforms are also sites for amplifying potentially harmful online content that corrupts elections, threatens journalists, increases polarisation, and incites violence during or after the polls. 

The organisers invited X (Twitter), Meta (owner of Facebook, Instagram and Whatsapp), Google (owner of YouTube), and TikTok to be part of the discussions, but representatives of these platforms did not attend. The call remains for these global tech companies to join such discussions in the future and to make their application programming interfaces (APIs) open and available to African researchers as a way of building trust, and working on joint responses or actions on misinformation and disinformation. 

The discussions recognised that long-standing African accords do provide for accessing information during elections, as agreed by the African Union’s African Commission on Human Peoples’ Rights. The stakeholders proposed that these resources be linked to further pan-African instruments on data and on elections, in order to ensure improved data access and governance on a continental scale.

RIA and IMS are encouraging further multi-stakeholder dialogues among more actors at the country level focused on using big data to research both positive and negative dimensions of platforms in regard to the integrity of African elections and online content. More specifically, the meeting emphasised research aimed at studying how organised networks and large language model-based generative artificial intelligence (AI), and other forms of AI-based technologies, are impacting the polls.

On a related matter, the stakeholders encourage the European Commission and Digital Services Coordinators to ensure that researchers and research institutions outside the European Union, including on the African continent, can gain access to platforms’ APIs and search engines’ data under the European Digital Service Act’s (DSA) Article 40.  

More concretely, this means ensuring that researchers not based in the EU are eligible to become “vetted researchers” as defined by the DSA when conducting research that contributes to “the detection, identification, and understanding of systemic risks in the Union.” These steps would strengthen inclusivity and diversity by taking into consideration the DSA’s global potential and impacts.

The discussions recognised that public interest access to data held by the platforms is not at the expense of personal data protection, and that the two objectives are not mutually exclusive.

Africa Freedom of Information Centre (AFIC), Collaboration on International ICT Policy for East and Southern Africa (CIPESA), Digital Action, Paradigm Initiative, Somali Media Women Association (SOMWA) and OpenUp  express support for the momentum of national dialogues on these topics. 

To add your organisation’s name, or for further information, please email: [email protected]

Originally published on Research ICT Africa. See here.

18Dec

Growing the Capacity of  Journalists and Advocates to Tackle Electoral Disinformation in Congo

Author CIPESA Posted on

By Nadine Kampire and CIPESA Writer |

The lead up to the December 2023 general elections in the Democratic Republic of Congo (DR Congo) has seen an exponential growth in disinformation, particularly on social media. In a country with long-standing armed conflicts and where only one peaceful transfer of power has been witnessed in 63 years of independence, the deluge of disinformation threatens to deepen social division, undermine electoral integrity, and stoke post-election violence.

While journalists can play a critical role in countering falsehoods by providing accurate and unbiased information to the public, many Congolese journalists lack the skills and resources to identify, fact-check, and call out disinformation and hate speech. On the other hand, some mainstream media houses – particularly those owned by politicians – are actively disseminating disinformation and hate speech.

Ahead of the elections, the Collaboration on International ICT Policy for East and Southern Africa (CIPESA) worked with Congolese partners to build the capacity of journalists, activists and fact-checkers to fight disinformation. The engagements centred on tackling electoral disinformation as well as disinformation and hate speech related to the armed conflict in eastern parts of Congo.

Peace has eluded the Congo for decades. Much of the political turbulence and armed conflict has stemmed from the unwillingness of leaders to relinquish power, the run-away corruption, a central government that lacks control over large swatches of its territory, and the proliferation of armed groups in areas where the central government is absent.

In turn, politicians, armed groups and their allies exploit the social and economic challenges to stoke  tension by manipulating public opinion to generate support for their extremist political views or groups and channelling the public anger to promote hate speech and disinformation to further escalate the ethnic and regional conflicts. 

The December 20, 2023 presidential election has attracted 20 candidates, including the incumbent, Felix Tshisekedi, who is standing for his second and final term. His first term has been dogged by the M23 rebellion in the east of the country, which Congo says is supported by the Rwanda government, with whom the former broke diplomatic ties. 

In late 2022, CIPESA convened a meeting for Congolese and Rwandan journalists and digital rights activists to discuss how they could play a more effective role in countering disinformation in the conflict between the two countries. That meeting gave journalists and activists an intimate understanding of the nature of disinformation related to the conflict, its instigators and spreaders, and drew up pathways for the journalists and activists to better combat disinformation. 

In the earlier part of 2023, CIPESA and partners conducted interviews among journalists and human rights defenders in eastern Congo and border areas in Rwanda, including those involved in earlier capacity development engagements. From their accounts, it was apparent that conflict-related disinformation had grown exponentially as armed conflict intensified and relations between Congo and Rwanda further deteriorated. On the other hand, as elections drew closer, electoral disinformation bloomed too. Worryingly, journalists and government officials were among the main instigators and agents of disinformation.

The interviews indicated that the information war in the country had expanded. The country’s long history of political instability has created an environment where misinformation, disinformation and hate speech thrive, particularly on social media. As a result, social cohesion continues to be undermined, while armed conflict is fuelled. Divisions among the country’s diverse ethnic groups, and the deterioration of diplomatic relations with Rwanda, contributed to escalating tensions and hostility. 

Last July, CIPESA again gathered journalists, human rights defenders and civil society players from Congo and Rwanda in the border town of Rubavu to grow their capacity and draw up efforts to counter electoral disinformation and hate speech. As media consultant Pascal Chirhalwirwa told the meeting, while it required commitment to combat the spread of disinformation, journalists and social media influencers had a primary role to fact-check news and create awareness about disinformation. Chirhalwirwa said unless digital literacy is created among community members by trusted actors such as independent journalists, efforts to fight disinformation will attain limited results.

Sammy Mupfuni, director of the fact-checking agency Congo Check, stated that electoral disinformation had raised tensions in communities, adding that several content creators and media houses had aligned themselves with factions on whose behalf they disseminated disinformation.

Many media houses in Congo are owned by politicians, many of whom shamelessly use them to promote partisan interests, including through the use of disinformation. The fact that many media houses struggle to maintain commercial viability means they are easily compromised to propagate disinformation and hate speech. The long-established, widespread, and corrupt practice of coupage, whereby journalists receive a cash payment for covering an event or reporting certain information, is funnelling disinformation narratives even in mainstream media.

Instigators of disinformation mostly use social media platforms, such as Facebook, Twitter and WhatsApp, to mobilise support along ethnic lines, to discredit rival candidates and parties, to try and disenfranchise voters, and in some cases promote violence against groups of minorities or their political opponents. Indeed, labelling rivals “fake Congolese” or “candidate of the aggressor country” has been commonplace.

The weak media environment in the DR Congo and low media literacy among citizens enable the spread of false information without being challenged or fact-checked. 

Whereas CIPESA’s engagements during 2022 and 2023, alongside initiatives such as  Afia Amani, Congo Check and Blogoma are working to push back against disinformation, to promote community awareness about the problem and to promote digital literacy, particularly in eastern Congo, their reach remains limited given the enormity of the problem and the resources which disinformation promoters possess.

Similarly, media houses still keen on providing truthful information struggle to match the speed at which conflict- and elections-related disinformation spread due to limited skills and funding. Enhancing editorial guidance on the part of local media outlets and journalists also remains a need, as is building the capacity of a larger movement of journalists, independent content creators and activists that are able to fact-check, promote professional journalistic ethics, undertake digital literacy for citizens, and speak out loudly against the vice of disinformation in the country.

18Dec

Congo Heads to the Polls: Why it is Crucial to Keep the Internet On

Author CIPESA Posted on

By CIPESA Writer |

The Democratic Republic of Congo (DR Congo) heads to general elections on December 20, 2023 amidst considerable turbulence, including a deluge of disinformation and endemic insecurity in parts of the country. To move towards building a safer and more democratic society, the Congolese government must break away from its past practice of limiting internet access and commit to keeping the internet accessible ahead of, throughout and after the election period.

For more than a decade, network disruptions have been a hallmark of elections in the DR Congo, Africa’s fourth most populous country. The first network disruption, which affected Short Messaging Services (SMS), was witnessed in December 2011, following disputed elections. The government claimed the move was necessary to prevent the online spread of fake results prior to the official announcement by the electoral commission.

Three years later in January 2015, the Congolese government again ordered telecommunications companies to block access not only to SMS but also the internet. This shutdown came on the backdrop of protests against a proposed electoral bill. Whereas banks and government agencies were granted access to the internet four days after the shutdown, the general public did not regain access until after three weeks.

In 2016, the government ordered telecom operators to block access to social media sites as an attempt to thwart mobilising by protestors against then president Joseph Kabila’s stay in office beyond the two-term limit. In January 2018, internet access and SMS were disrupted ahead of a peaceful protest march organised by the Catholic Church to compel Kabila to step down following the expiry of his final term in office. 

The Congolese government again disrupted the internet during the last general elections in December 2018. A senior government official justified the move as necessary to preserve public order after “fictitious results” were circulated on social media. 

Congo faces strong challenges to electoral integrity, including logistical ones such as faulty voters’ cards, poor infrastructure that renders delivery of electoral materials cumbersome, and armed conflict that will likely limit voting in some areas. Moreover, the rampant electoral disinformation has fuelled insecurity and hindered many citizens’ ability to access credible and pluralistic information necessary to make informed and independent choices. 

Opposition leaders have accused the electoral commission of lacking independence and questioned its ability to hold free and fair elections. This has fomented hostilities against the electoral body and its officials and raised the possibility of post-election violence. 

Meanwhile, since November 19, 2023, the Committee to Protect Journalists has documented attacks or threats against at least four journalists and the closure of at least one broadcast station.

Today, a disruption to the internet would exacerbate the challenges of disinformation, incite violence, endanger people’s lives, affect press freedom, and have long-lasting harms on Congo’s economy. Shutdowns provide a shield to those who perpetrate human rights violations, deny people access to critical information, and amplify the spread of misinformation as they block access to alternative sources of verification. The resulting lack of transparency would fuel doubts about the integrity of the elections and heighten the prospects for violence.

Internet shutdowns also violate regional and international frameworks including the African Charter on Human and People’s Rights (ACHPR), the Declaration of Principles on Freedom of Expression and Access to Information in Africa 2019, and the International Covenant on Civil and Political Rights (ICCPR). These frameworks uphold fundamental human rights including freedom of opinion and expression, access to information, right to assembly and social, economic, cultural and political rights.

Indeed, the United Nations Special Rapporteur on the Rights to Freedom of Peaceful Assembly and of Association has noted that network shutdowns are in clear violation of international law and cannot be justified in any circumstances.

The 2023  election could be a key step in Congo’s move toward a more democratic, tolerant and safe society. How the country handles the election process, including the transparency and integrity of the entire electoral cycle, could determine whether the post-election period will be peaceful and see meaningful social cohesion in the country.

07Dec

Patient Data Privacy in the Age of Telemedicine: Case Studies from Ghana, Rwanda and Uganda

Author CIPESA Posted on

By CIPESA Writer |

With the increasing adoption of digital tools in healthcare provision in Africa, these case studies on e-health startups in Ghana, Rwanda and Uganda show how countries are dealing with privacy implications around patient data.  

Telemedicine is broadly defined as the delivery of healthcare services including diagnosis, treatment, research, education and evaluation to communities and individuals over long distances using information and communication technologies.  

A variety of other terms such as e-health, e-medicine, and tele-health are sometimes used interchangeably to mean the same thing as telemedicine. Remote delivery of healthcare services using telecommunications infrastructure helps overcome various barriers where access to quality healthcare is still a challenge. They ensure that no matter the patient’s location, they can still access timely care via telephone consultations with a physician, or obtain an express pick-up service of diagnostic tests and home delivery of results, or online access to prescription drugs. This is increasing equity in healthcare access for many in Africa. 

Covid-19, A Blessing in Disguise

Following the outbreak of Covid-19 in 2020, many African countries instituted some of the harshest containment measures to stop the spread of the disease. Entire economies were shut, from markets to schools to public transportation, and any activity that involved people getting into physical contact with one another was severely restricted. 

During the period, healthcare-seeking behaviour changed, since hospitals were at the epicentre of the crisis, receiving patients and hosting isolation centres. As a result, many African governments increased their reliance on digital technologies to contain the spread of the virus. Some of the measures included increasing digital transformation efforts, expansion of e-government services, mobile money services, and internet access. Furthermore, ministries of health relied on digital technologies and mobile applications for contact tracing, ambulance management, delivery of drugs, and awareness creation, and encouraged citizens to seek medical care online. This dramatically increased the visibility and popularity of hitherto unknown e-health startups and led to the rapid development of new ones.

For example, Uganda’s Rocket Health, a telemedicine start-up in existence since 2012, saw a dramatic increase in the number of subscribers. Similarly, Ghana’s mPharma, a startup that originally specialised in running a network of online pharmacies, diversified its services from simply delivering drugs to facilitating patient-physician telephone consultations. Also, Rwanda’s e-government Portal Irembo became the de facto hub for ordering Covid-19 tests and applying for and renewing Mutalle des sante, the country’s community-based health insurance scheme.

With a doctor-to-patient ratio of 0.2 physicians per 1,000 people compared to a global average of 1.6 as of 2018, the appeal of telemedicine in Sub-Saharan Africa is not surprising, given the enormous gap in healthcare providers. In addition, the increasing access to mobile phones (43%) and internet penetration (46%) in Sub-Saharan Africa are a great enabler of the surge in e-health adoption.

Patients’ Data Privacy Concerns

Inevitably, the increasing adoption of telemedicine is generating questions about the quality of care and the protocols in place to safeguard and protect patients’ health data. Until recently, there were few legal and policy guidelines regulating the use of telemedicine in most African countries. Bodies such as the World Health Organization (WHO), the African Union (AU), and the Africa Centres for Disease Control and Prevention (CDC) have in the recent past published digital transformation strategies to leverage the current surge in digitalisation. 

However, while several countries have enacted data protection laws and policies, they tend to be broad in outlook and are not focused specifically on e-health, the data it generates or how to safeguard it. Likewise, despite several African Ministries of Health drawing up Digital Health Strategies (see for instance Uganda, Malawi and Ghana), measures to safeguard digital patient data privacy and protection have not been extensively elaborated. 

A 2021 study assessing the attitudes of telemedicine users in Sub-Saharan Africa found that trust, data safety and privacy concerns were among the biggest worries users had about telemedicine platforms. While the study revealed a wide usage of telemedicine technology across the region, it also showed that technological, organisational, legal and regulatory, individual, financial, and cultural issues were major barriers to the successful implementation of telemedicine in the region. Moreover, concerns regarding patients’ security, privacy and protection of medical data were highlighted as major barriers to the adoption of e-health technology as they created doubt for both clinicians and patients in terms of protection against potential abuse of patients’ data and unlawful disclosure of confidential medical records. 

A Closer Look at Select Telehealth Startups and their Data Privacy Policies 

Most e-health apps have long and elaborate Terms of Use and data privacy policies to assure users of their data privacy and security. These policies may differ from one app to the other, depending on the services provided, the nature of the operation of the start-up (for example, some are Public-Private-Partnerships where governments have a stake) and the legal framework in the country of operation. However, some terms of use are too long and stepped in too much legalese that most users do not read them or when they do, may not sufficiently understand the provisions or their implications. 

  1. Rocket Health (Uganda)

Rocket Health is a telemedicine service offered by The Medical Concierge Group (TMCG) Ltd. It offers teleconsultations, an online pharmacy with home delivery of medicines, laboratory services, and clinic services. Recently, it opened a number of physical clinics around Kampala. 

Rocket Health’s popularity exploded following the outbreak of Covid-19, moving from a few thousand virtual consultations a year to about 400,000. The company charges a USD 3 consultation fee and USD 1.5 for drug delivery, making it affordable to a majority of its clientele. Currently, the company reports over one million interactions facilitated with up to 80,000 active users. Since its inception, Rocket Health has grown its reach to 42,597 voice call users, 6,862 WhatsApp users, and 40,000 followers via the different social media platforms through which its services are also available.

In 2022, Rocket Health raised more than USD 5 million from investors and commenced scaling up its operations. The Medical Concierge Group Africa has now set up shop in Kenya and Nigeria to enable it to venture into more tele-health innovations and plans are underway to expand their portfolio to other African countries.

Users mostly access Rocket Health Services through its website or by downloading the Rocket Health Android app on their smartphones. In addition, the service can be accessed through a USSD service (*280#) for those with feature phones, and through chat on its social media channels on WhatsApp, Facebook and X.

Rocket Health collects and processes an enormous amount of data from its clients. It is worth examining how the company guarantees the safety and privacy of its patients’ data. The company has an extensive data privacy policy on its website that explains in detail the data it collects, how it collects it, and how it uses it. The policy states that “TMCG may collect some information from other third-party applications such as Facebook, Twitter, when you subscribe to our services, participate in surveys, login into our websites using a third-party login system (including, but not limited to, Facebook, Twitter, etc.), or otherwise communicate with us”. 

 The company adds that it takes precautions to protect collected personal information from loss, misuse, unauthorised access, disclosure, alteration, or destruction, taking into account the risk level and the nature of the data. However, it adds that clients “are responsible for taking every reasonable precaution on your end to protect any unauthorised person from accessing your TMCG account.”

 The c companies also adds a disclaimer that “…due to the design of the internet and other factors outside our control, we cannot guarantee that communications between you and our servers will be free from unauthorised access by third parties.”

The Personal Data Protection and Privacy Act (2019) is the primary legislation governing the protection of personal data in Uganda. The law aims to safeguard the privacy of individuals’ personal information and to regulate the processing of personal data by data controllers and processors. It further spells out the obligations of data collectors, processors and controllers while handling personal data. It also regulates the use and disclosure of personal data. It specifies the rights of the data subject, including seeking consent, explanation of the nature of the data being collected and its purpose. 

Moreover, the law established the Personal Data Protection Office (PDPO) under the National Information Technology Authority – Uganda (NITA-U), mandated to oversee the implementation and enforcement of the Act, receive and investigate complaints from data subjects, and establish and maintain a data protection and privacy register. The Uganda Data Protection & Privacy Regulations 2020 provide specific rules and requirements for adherence to the Personal Data Protection and Privacy Act.

All organisations collecting personal data are required to register with the PDPO for compliance monitoring and submit annual compliance reports on how they adhere to the data protection law. 

A briefing by the PDPO on data protection and privacy in Uganda’s public and private health sector stated that “Principles and obligations in the health sector Health-related data are sensitive information and the Data Protection and Privacy Act establishes them as a special category of personal data due to the possibility of discrimination based on the results of processing it.” The briefing calls on actors in the sector to adhere to the law:

All players in the health sector must be accountable to the individuals from whom data is collected (data subjects) by registering with the Personal Data Protection Office (PDPO), which is the regulator of processors and controllers of personal data. These players must also establish technical and organisation measures which demonstrate compliance, such as having a Data Protection Officer, data protection and information security policies, maintaining a record of all processing activities within the organisation, and conducting data protection impact assessments to mitigate the risks associated with the processing of personal data.

The PDPO online data protection register shows that Rocket Health’s parent company, The Medical Concierge Group Ltd, only registered with the authority in September 2023, over 10 years after its establishment.

A 2021 Privacy Scorecard report for Uganda by Unwanted Witness found that health services in the country recorded the lowest performance for robust data security, with private health facilities exhibiting the worst levels of vulnerability in compliance with data protection standards.

Image poto

Visual Credit: Unwanted Witness

In its Health Information & Digital Health Strategic Plan 2021-2025, the Uganda Ministry of Health aims to “Improve data security and disaster recovery to ensure continuous access and availability of health data as well as compliance to data protection and privacy act.” Under this goal are key strategic interventions including to:

  • Develop guidelines for data privacy and protection in the health sector including secure handling and use of data and ICT assets. 
  • Undertake a census of all data controllers in the health sector to facilitate monitoring for compliance to established guidelines. 
  • Implement security protocols for data access in the health sector.
  • Undertake capacity building of health workers on data security, privacy, and protection in conjunction with the GoU data protection office.

There is so far no publicly available evidence that the Ministry and the PDPO have started this collaboration or when it is expected to start.

  Irembo e-Government Platform (Rwanda)

 Irembo (which means ‘Gateway’ or ‘Door’ in the local Kinyarwanda language), is an e-citizen portal for the provision of various government services to the public. The portal is managed by Irembo Ltd, a local technology company, in partnership with the Government of Rwanda. Started in 2015, the Irembo portal has enabled most Rwandan government agencies to digitise their services, eliminating paperwork and long wait times. Many services in sectors such as family and social affairs, immigration, identification, land, health and education offer services on the platform. Since its launch, the platform has processed over 25 million applications worth USD 300 million.

 Some of the health services provided on the platform include ordering and paying for Covid-19 tests and purchasing Mutuelle, a popular low-cost national community-based health insurance. Irembo is regulated under the Rwandan privacy law and is required to safeguard the privacy and security of its users’ data.

Furthermore, Irembo has published its Data Privacy Policy on its website which describes how it uses and protects the personally identifiable information collected from users of the platform.  The policy states it “is not intended that the e-Government Services Online Portal can be used anonymously. But no personal information shall be collected from you, unless you provide it voluntarily.”  It adds: 

 As a general rule, we do not collect personal data about you when you visit Irembo web, unless you choose to provide such information to us. Submitting your personal data through our website is voluntary. By doing so, you are giving us your permission to use the information for the services you requested for. We collect personal data to provide you with the services you have requested, including services from third party providers. We may share the above information with Government Institutions, Ministries and Agencies in the performance of their official duties and/or providing you the services you requested for.

 The Government of Rwanda officially gazetted Law Nº 058/2021 of 13/10/2021 relating to the protection of personal data and privacy on October 15, 2021. This Law designates the National Cyber Security Authority (NCSA) as the supervisory authority of the law. On March 31, 2022, the NCSA officially launched its data protection office, which will spearhead all activities related to protecting the personal data of individuals in Rwanda. In August 2023, Irembo was accredited by the NCSA as a data controller and data processor, in accordance with the data protection law.

 The data protection law defines sensitive personal data as “information revealing a person’s race, health status, criminal records, medical records, social origin, religious or philosophical beliefs, political opinion, genetic or biometric information, sexual life or family details.” The Rwandan constitution also provides for the right to privacy under article 23 as their fundamental right and any data collected on citizens must only be done with consent.  

 mPharma (Ghana)

The Covid-19 pandemic was also a boon to Ghana’s nascent telemedicine industry. The surge in Covid-19 cases in 2020 meant that Ghana had to institute drastic measures to contain the pandemic. These included scaling up efforts to integrate telemedicine into the mainstream healthcare system.

One of the companies that took advantage of this crisis was mPharma, a Ghanaian start up originally founded to manage prescription drug inventory for pharmacies and their suppliers. The company started providing physician consultations at its network of Mutti pharmacies and also set up online patient-doctor consulting, to reach more people, just as Rocket Health did. 

mPharma now employs hundreds of people and has since expanded its operations to Gabon, Ethiopia, Nigeria, Kenya, Zambia, Malawi and Rwanda.  In 2022, the company raised USD 35 million from investors and plans to expand into more African countries. 

mPharma’s privacy policy is remarkably similar to that of Uganda’s Rocket Health except that it goes into more detail on what happens to clients’ data in case it is to enter into a merger or is acquired by third party companies, but does not state if the data subjects have a right of refusal to such potential transfer of data.

In the event of any merger, acquisition or other arrangement whereby mPharma sells or transfers all, or a portion of its business or assets (including in the event of a reorganisation, dissolution or liquidation) to third parties, you hereby consent that your personal data held with mPharma can be transferred or assigned to third parties who may become the controllers and/or processors of your personal data that was held by mPharma prior to such merger, acquisition or other arrangement. mPharma shall at all times ensure that you are notified when your personal data is intended to be transferred to third parties in the circumstances outlined in this clause.

Ghana was one the first African countries to pass a data protection law back in 2012. Its Data Protection Commission (DPC), which enforces this law, is one of the oldest on the continent. The registration of data controllers and data processors started in January 2015. The Data Protection Act places special emphasis on health data. Article 62 states that “Personal data which relates to the physical, mental health or mental condition of the data subject shall not be disclosed except where the disclosure is required by law,” among other exceptions. 

In July, 2010, the Government of Ghana launched the national e-health strategy and is planning to  launch a digital health strategy. The national ICT Sector Policy and Strategy highlights the increasing cyber threats hindering the adoption of ICT in healthcare and calls for mechanisms for the protection of patient data.

How to ensure patient privacy and data protection 

There are significant gaps in current data protection and privacy policies of eHealth service providers in Africa regarding patient data collected. For example,

  •   Some startups in their privacy policies do not provide for protections in case of mergers or acquisitions, a common occurrence in startup ecosystems; or what the rights of the data subjects are in this situation and what privacy implications such mergers might have on clients’ data rights. 
  •     Secondly, most of the policies are written in such a careful and calibrated way to reduce as much as possible the burden of responsibility and duty of care for patient data protection, away from the company. This is the reason for multiple indemnifications and disclaimers written in the company policies. 
  •   Thirdly, the regulatory environment in terms of national data protection laws is not robust enough as it does not provide sector-specific guidance especially for very sensitive sectors such as healthcare. While the general legal regime on data protection appears strong, there is a need for specific guidelines to ensure patient privacy and data protection in the digital health context. Entire sections need to be added in National Data Protection Laws that focus on health data governance especially in digitally provided healthcare services. 
  •   There is also limited collaboration between Ministries of Health and Data Protection Authorities. There is thus far little evidence of any sanctions that have been borne by health startups that have not adhered to some of the requirements of the Data Protection Authorities, such as registering their operations with the data protection authorities and hiring data protection officers in their companies.

Data protection offices need to work more closely with ministries of health and private digital health providers to design strong regulatory frameworks that guarantee patient privacy and data safety while facilitating the growth of the telemedicine industry. 

Countries could model their digital health data protection policies on the WHO guideline recommendations on telemedicine, which calls for client-to-provider telemedicine to complement, rather than replace, the delivery of health services and in settings where patient safety, privacy, traceability, accountability and security can be monitored. In this context, WHO further states that monitoring should include the “establishment of standard operating procedures (SOPs) that describe protocols for ensuring patient consent, data protection and storage, and verifying provider licensing and credentials.”With many startup companies increasingly venturing into health services, the data protection laws need to be updated accordingly to provide more robust health data protection. 

Companies could, among other measures, take the following actions:

  •   Update their clients with information of any mergers or takeovers of their companies in case they happen, appraise them of the implications of such mergers and what role the clientele has to play, or their rights and obligations. 
  •   Any app updates or system upgrades with implications on patient data, new demands for, or changes in their data protections protocols, should be swiftly and transparently communicated to users, as well as what implications that might have on the use of these apps on their devices.
  • Conduct ongoing, consistent education of their clients on their data rights and the measures being taken to ensure the protection, privacy and integrity of medical records.
  •     Beyond just bland privacy policies and Terms of Use documents on their websites, companies need to have robust engagement and communication strategies to guide their constant interfaces with clients to ensure consistent safety and privacy of their data.
01Nov

CIPESA Conducts Digital Rights Training for Ethiopian Human Rights Commission Staff

Author CIPESA Posted on

By CIPESA Writer |

The Collaboration on International ICT Policy for East and Southern Africa (CIPESA) has conducted a digital rights training for staff of the Ethiopian Human Rights Commission (EHRC) in a programme that benefitted 22 experts from various departments of the statutory entity. 

The training was a response to the desire by the commission to build its organisational capacity in understanding and defending digital rights and CIPESA’s vision to grow the ability of African national human rights institutions (NHRIs) to monitor, protect and promote digital freedoms.

Conducted in the Ethiopian capital Addis Ababa on October 11-12, 2023, the programme aimed to build the EHRC staff’s understanding of digital rights issues and the link with traditional rights. Participants went on to brainstorm how the EHRC should strengthen human rights protection in the digital space and through the use of technology.

Dr. Abdi Jibril, the Commissioner for Civil and Political and Socio-Economic Rights at the EHRC, noted that the proliferation of digital technology has contributed positively to human rights protection. It was therefore necessary to maximise the benefits of digital technology and to expand its usage for the promotion and enforcement of human rights.

The importance of growing the capacity of NHRIs was underscored by Line Gamrath Rasmussen, Senior Adviser, Human Rights, Tech and Business at the Danish Institute for Human Rights and CIPESA Executive Director Dr. Wairagala Wakabi. African NHRIs are not always well versed with the opportunities and challenges which technology presents, which creates a need for capacity development and developing partnerships with stakeholders such as civil society. 

As legislation governing the technology domain is fast-evolving, NHRIs in many countries are playing catch up. As such, these institutions need to constantly keep updating themselves on new legislation and implications of these laws on human rights in the digital domain. The NHRIs need to  enhance their capacity to document, investigate and report on digital rights. 

The NHRIs also need to pay specific attention to the vices such as hate speech, disinformation, and technology-facilitated gender-based violence (TF GBV), that are being perpetuated with the aid of technology.

Dr. Daniel Bekele, the Chief Commissioner at EHRC, stated that social media companies and messaging platforms are not doing enough to moderate harmful content in Africa yet in other geographical regions they have invested more resources and efforts in content moderation. He said African countries need to work together in order to build a strong force against the powerful platforms. The official proposed that the African Union (AU), working with relevant governments and other stakeholders, should spearhead the development of regulations which African countries can jointly use in their engagements with the tech giants on issues such as content moderation. 

 The two-day training discussed the positive and negative effects of digital technology on human rights and how the commission’s work to enforce human rights can be strengthened through the use of digital technology.

Among other topics, the training also addressed the human rights, governance and technology landscape in Sub-Saharan Africa; public and private sector digitalisation and challenges for human rights; the link between online and offline rights; transparency and accountability of the private sector in upholding human rights; and opportunities for NHRIs to advance online rights at national, regional and international levels. It also featured deep dives into key digital rights concerns such as surveillance, online violence against women, disinformation, and network disruptions. 

At the end of the training, the EHRC staff identified key actions the commission could integrate in its annual work plans, such as digital rights monitoring, advocacy for enabling laws to be enacted, and developing tools for follow up on implementation of recommendations on digital rights by treaty bodies and the Human Rights Council. Others were collaborations with local and regional actors including media, fact-checkers, civil society organisations, and platforms; working with the police and other national mechanisms to tackle hate speech and disinformation while protecting human rights; and conducting digital literacy.

Trainers in the programme were drawn from CIPESA, the Centre for the Advancement of Rights and Democracy (CARD), the Danish Institute for Human Rights, the Centre for International Private Enterprise (CIPE), the African Centre for Media Excellence (ACME), Inform Africa, and the Kenya National Cohesion and Integration Commission (NCIC).

Meanwhile, after the aforementioned training, CIPESA teamed up with Ethiopian civil society partners to conduct a training on disinformation and hate speech for journalists, bloggers and digital rights activists. Like many African countries, Ethiopia is grappling with a significant and alarming rise in hate speech and disinformation, particularly on social media platforms. This surge in disinformation is undermining social cohesion, promoting conflict, and leading to a concerning number of threats against journalists and human rights defenders.

The proliferation of disinformation is to citizens’ fundamental rights as studies have shown that many Ethiopians feel their right to freedom of expression is compromised. The prevalence of disinformation also means that many Ethiopians lack access to impartial and diverse information.

Disinformation has been directly fueling conflict in several regions of Ethiopia. According to workshop participants and reports, both pro-government and anti-government actors have perpetuated this vice, whose real-world consequences are severe, including the loss of life and large-scale violent events.

Whereas Ethiopia in 2020 enacted legislation to curb hate speech and disinformation, the effectiveness of this law has been called into question. Some critics argue that it has not been effectively implemented and could be used to undermine citizens’ rights.

The training equipped 21 journalists, bloggers and activists with knowledge to navigate this law and with skills to call out and fight disinformation and hate speech. The efforts of the trained journalists, and those which the human rights commission could implement, are expected to boost the fight against online harms and contribute to the advancement of digital rights in Ethiopia.

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