Data privacy Archives – Page 2 of 11 – Collaboration on International ICT Policy for East and Southern Africa (CIPESA)

20Dec

Ongoing Power Cuts Set Back South Africa’s Gains on Digital Access

CIPESA December 20, 2023January 18, 2024

By Tusi Fokane |

Over the last 15 years, South Africa has been caught in the midst of an energy crisis with 2023 marking the most challenging period. The country experienced record-breaking power cuts, resulting in 300 days of load shedding at an economic cost of ZAR 1 billion per day (USD 55 million). The power cuts which in some instances run up to eight hours a day have impacted South African society in various ways including through a rise in crime, reduced access to economic opportunities, health care, education and essential government services. There have also been concerns raised on the impact of load shedding on access to the internet.

Internet access concerns fueled by the power cuts have included data affordability, availability of pre-paid internet packages, and convenience of access. Whilst telecommunications companies have taken steps to minimise access disruptions, by investing in increased security, back-up, and alternative sources of energy, experts have warned that the continued power disruptions would exacerbate the digital divide, particularly for rural and poor communities. As part of efforts to avert the crisis, in May 2023, the Independent Communications Authority of South Africa (ICASA), established a committee to assess the impact of load shedding on consumers of electronic communications, broadcasting, and postal services towards informing regulatory interventions for the sector.

Meanwhile, according to the Institute for Security Studies (ISS) telecommunications companies are lobbying for the declaration of the sector as a national strategic asset under the Critical Infrastructure Protection Act. The law deems a sector critical if it is essential for the economy, national security, public safety and the continuous provision of basic public services.

A Fracturing Digital Access Divide

An estimated 79 percent of the South African population has access to the internet, predominantly through their mobile devices. Access to the internet, particularly in the post-Covid-19 environment, increased reliance on the sector as internet access facilitated many digital activities such as remote work and e-learning. However, the frequency of load shedding affects digital gains particularly for small businesses and students, leaving those without access to alternative sources of power, often unable to access internet services effectively. According to Accountability Lab, citizens who can afford extra internet data, generators, and solar panels are managing to cope with the power outages. However, the Lab notes a widening of the gap between “digital haves and have-nots” and stresses that ”with limited access to online education and work options, citizens who are already struggling to afford the cost of living find themselves further behind.” Activists have warned that any load shedding mitigation undertaken by mobile network operators should not come at the expense of poor consumers who run the risk of being charged more for data services.

Indeed, in a country with one of the highest inequality levels in the world, and an unemployment rate of 42 percent, there are concerns that continued load shedding is contributing to inequality and deepening the digital divide. Lower-income households have resorted to staying up until midnight waiting to benefit from “internet happy hours” where data packages are offered at cheaper rates than daytime packages.

Money Spent on Mitigating Load Shedding Could be Used to Expand Rural Access

Telecommunications service providers have not been spared from the consequences of the power cuts. The country’s second-largest mobile operator – MTN South Africa – reportedly spent ZAR 6.6 billion ( USD 360 million) on improvements to its network in 2023. Competitor, Vodacom, is set to increase its annual infrastructure spend to ZAR 12 billion (USD 654 million) to strengthen its network. The investments will go towards back-up power systems (additional batteries, fuel and generators, and alternative energy sources) at their base stations and data centres. In addition, operators face increased security costs, due to theft and vandalism at their sites including the potential theft of high-capacity batteries which can fetch high values on the black market.

The investment into back-up systems and batteries is key as longer periods of load shedding often result in batteries not charging sufficiently, affecting network availability, particularly in rural areas. ICASA was recently taken to task by Members of Parliament for not conducting effective oversight in ensuring access to adequate network coverage. It was noted that service providers generally take their time to get to rural areas when there is a breakage or theft of cables or batteries, which undermines network stability in affected communities. The Select Committee Chair on Public Enterprises and Communication highlighted that internet access “is now no longer a matter of privilege but rather a right to have reliable signal” adding that ICASA needs to be firm and ensure that communications services are consistently provided.

However, further challenges remain in rural areas which still face insufficient infrastructure deployment. Network operators concede that ongoing load shedding diverts much-needed capital away from rural infrastructure projects and new technologies. Concerns have also been raised on the negative impact to consumers, who will likely carry the additional costs through higher tariffs. Higher income earners have invested in fibre and wireless solutions to maintain connectivity during load shedding, but this comes with the additional costs of installing uninterruptible power supply (UPS). Some experts suggest that satellites, coupled with alternative energy sources, may be more resilient during higher stages of load shedding, or in the event of a total grid collapse.

Industry stakeholders, through the Association of Comms and Technology have been lobbying for increased government support through policy reform and fuel subsidy rebates in order to avert a digital doomsday scenario where digital networks fail as a result of ongoing power cuts. The industry eagerly awaits the outcome of the ICASA committee on the impact of load shedding on the communications sector, which will hopefully also provide some relief to South African internet users.

18Dec

CIPESA Launches Framework to Assess ICT Accessibility for Persons with Disabilities in Africa

CIPESA December 18, 2023January 31, 2024

By Frank Kisakye |

In many instances, persons with disabilities are unable to use digital technologies because these technologies lack “digital accessibility,” namely the ability of a website, mobile application, or electronic document to be easily navigated and understood by a wide range of users, including those with visual, auditory, motor or cognitive disabilities. The issue is especially key in African countries, where persons with disabilities contend with various forms and layers of exclusion, contradicting the potential for inclusion promised by technology despite one of the pillars of the 2030 Agenda for Sustainable Development Goals (SDGs) pledging to “leave no one behind.”

Against this background, the Collaboration on International ICT Policy for East and Southern Africa (CIPESA) hosted experts from multiple countries in a webinar to discuss developments pertaining to efforts aimed at enhanced digital inclusion for persons with disabilities. The webinar also served to commemorate the International Day for Persons with Disabilities on December 4, for which CIPESA launched its revised Disability and ICT Accessibility Framework Indicators: A Framework for Monitoring the Implementation of ICT Accessibility Laws and Policies in Africa.

Speaking at the webinar, Dr. Abdul Busuulwa, a lecturer at Kyambogo University Institute for Special Needs (Uganda) and also a CIPESA board member, noted that there are several tools and devices that mitigate barriers to accessibility for users with visual, physical, hearing, intellectual, and psychosocial disabilities. He also highlighted the accessibility guidelines published by the Web Accessibility Initiative of the World Wide Web Consortium which are aimed at making web content more accessible for persons with visual and hearing impairment, learning disabilities, cognitive limitations, limited movement, speech disabilities, photosensitivity, and combinations of these.

However, the spectrum for ensuring digital access for persons with disabilities is expansive. Titilola Olatunde-Fasogbon, a senior associate at Udo Udoma & Belo-Osagie (Nigeria), noted that in addition to the technical aspects of inclusion, such as websites, more deliberate efforts need to be made by stakeholders in the information ecosystem. Olatunde-Fasogbon pointed out the role of media houses and the need for more investment into meeting the needs of persons with disabilities as part of broadcasting, such as through more sign language interpretation, subtitling, dubbing for non-English speakers or audio-to-text options, as well as provisions for alternate text for non-text content.

She added that governments also need to ensure that policies and laws align to enhance digital inclusion for excluded communities and that they should be at the forefront of driving such policies. Further, that for digital inclusion to be realised for persons with disabilities, civil society organisations must pursue more collaborative efforts with governments as “governments are obligated to offer the much-needed tax-related policies, tax holidays for commercial companies involved in digital inclusion beyond just passing the laws.”

Collaborative efforts were also emphasised by Dr. Diana Msipa, Manager, Disability Unit at the University of Pretoria (South Africa), who stressed that digital inclusion efforts should even be more deliberate for persons with disabilities in rural areas as they face numerous exclusions such as limited availability of infrastructure and public resources, as well as scarce economic opportunities. Dr. Msipa called for more conscious efforts to make it mandatory for governments and organisations to translate adverts, engage sign language interpreters, and use of non-complex language, among other measures, to ensure information reaches audiences often excluded.

Further efforts at Diversity, Equity, and Inclusion (DEI) also need to be part of narratives on digital inclusion for persons with disabilities, including through more employment opportunities and leadership positions for persons with disabilities. Dr. Karen Smit, Manager of Disability Unit at Vodacom (South Africa) stated that, “Employers should embrace an inclusive culture so that staff with disabilities can feel they belong. Senior leaders must speak about disability, and ongoing awareness raising must be conducted with management and all staff.”

Dr. Smit noted that solutions for digital inclusion already exist for mainstream devices and called for more stakeholders, including private sector actors, to pursue awareness initiatives and campaigns on their existence. She noted that Safaricom – a subsidiary of Vodacom – introduced the Interactive Voice Response (IVR), a mobile money (M-PESA) solution that enables the visually impaired and blind customers to be in control of their M-PESA transactions.

Similar sentiments were expressed in a 2020 CIPESA report – Access Denied How Telecom Operators in Africa Are Failing Persons With Disabilities, which found that while there are various efforts to increase ICT usage in Africa, there is limited information about what telecom companies are doing to promote digital accessibility.

While there may be efforts aimed at improving digital inclusion, these need to be assessed regularly. CIPESA’s Revised Disability and ICT Accessibility Framework notes that an accessible web also benefits people without disabilities, for example, older people with changing abilities, people using a slow/expensive Internet connection; and people with “temporary disabilities” such as a broken arm or poor eyesight. The framework implores companies, governments, and organisations to conduct a self-diagnosis on whether they meet the threshold of the five broad disability and ICT accessibility framework indicators which include legal and regulatory, accessibility framework for public access, mobile communication accessibility, television, video programming accessibility, and web accessibility.

The five indicators were informed and crafted around key provisions within national laws, policies, and international human rights instruments on ICT and Disability. Other international ICT Accessibility standards, such as The Web and Mobile Content Accessibility Guidelines developed by the World Wide Web Consortium, informed the indicators.

It is anticipated that this framework will be useful for monitoring and measuring public and private stakeholders’ compliance and implementation of inclusion obligations and inform research, advocacy, and capacity building on ICT for persons with disabilities in the region.

In addition, the assessment informs planning for different interventions at country and regional levels since it reveals areas that need further interventions. It can also highlight good practices that can help inspire other countries that may still be far in the journey or still struggling with certain aspects of improving their disability digital rights.

Panelists encouraged Disability Rights Organisations, policymakers, mobile network operators, researchers, and academia interested in advancing the rights of persons with disabilities to utilise the framework as a key pillar in their digital accessibility and inclusion efforts.

Here is the Disability and ICT Accessibility Framework Indicators: A Framework for Monitoring the Implementation of ICT Accessibility Laws and Policies in Africa

07Dec

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

CIPESA December 7, 2023December 7, 2023

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.

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.

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.

03Nov

African Perspectives on Operationalising UNESCO’s Guidelines for Regulating Digital Platforms

CIPESA November 3, 2023November 9, 2023

By Juliet Nanfuka |

Across the world, governments are introducing laws to regulate online content. Many of these laws contain provisions that may lead to the increasing removal of legitimate expression as opposed to harmful and illegal content. In turn, the global community continues to grapple with the question of how harmful online content should best be moderated in a manner that does not undermine citizens’ right of access to information and freedom of expression.

On September 28, the United Nations Educational, Scientific and Cultural Organization (UNESCO) held a high-level panel discussion on unpacking African perspectives on the operationalisation of UNESCO’s Guidelines for regulating digital platforms. The session was among the discussions held at the 2023 edition of the Forum on Internet Freedom in Africa (FIFAfrica) which assembled organisations from across Africa and beyond to deliberate on reigning concerns in the internet governance and digital rights landscape.

The UNESCO Guidelines (in full referred to as Guidelines for regulating digital platforms: a multistakeholder approach to safeguarding freedom of expression and access to information) aim to safeguard freedom of expression, access to information, and other human rights in the context of the development and implementation of digital platform regulatory processes. The guidelines outline rights-respecting regulatory processes and promote risk and system-based processes for content moderation and curation. Following a series of multistakeholder consultations and contributions that started in September 2022 the guidelines have been under review with a launch of the final document yet to be announced.

The panel featured at FIFAfrica comprised John Bosco Mayiga, Programme Specialist at UNESCO, who moderated the discussion, Hon. Neema Lugangira, Chairperson of the African Parliamentary Network on Internet Governance (APNIG), Grace Githaiga, Convenor of the Kenya ICT Action Network (KICTANet), Dr. Simon-Peter Kafui Aheto from the University of Ghana, and Samira Danburam, New Media and Security Manager at the Nigerian Communications Commission.

Mayiga noted that there are growing shared concerns by many actors in the digital society on how to better harness the benefits of information platforms while also addressing the challenges that come with it. “There is much to gain with digital transformation. However, amidst hate speech and disinformation, there is also much to lose,” he said. “How do we move forward leveraging the advantages of the platforms, but also take care of the excesses that happen to be part and parcel of platforms?”

Githaiga noted that there are no fast and easy answers in dealing with the current challenges of content moderation. She further noted that the guidelines will be invaluable in serving as a basis for individual countries, especially as different countries are at different levels of digital regulation while socio-cultural contexts also vary across borders.

Indeed, various countries, particularly in Africa, are still grappling with navigating issues such as hate speech, disinformation, protecting legitimate online freedom of expression, content moderation, and data privacy. Dr. Kafui-Aheto added that the Internet Universality Indicators (IUI’s) are a great complementary tool to the guidelines. He also stressed that digital literacy, including on regulatory frameworks, is fundamental in the realisation and utilisation of the indicators and the UNESCO guidelines by more stakeholders.

The speakers discussed the potential paths that the operationalisation of the guidelines in Africa could take. There was consensus amongst panelists on the need to create regional and national multi-stakeholder networks that enable the active participation of diverse groups in the implementation of digital platform regulation. This consensus was reached as the challenge of ensuring that online platforms serve as places where individuals can seek factual information but without fear was a recurring theme across FIFAfrica.

Ultimately, the session stressed that the creation of an internet of trust cannot be the preserve of any particular group however specialised they are; it should be a collaborative effort that includes all stake-holders.

The guidelines are designed to inform regulatory processes under development or review for digital platforms, in a manner that is consistent with international human rights standards. According to UNESCO, the Guidelines may serve as a resource for policymakers in identifying legitimate objectives, human rights principles, and inclusive and participatory processes that could be considered in policymaking. The guidelines could also inform the policies and practices of digital platforms; and provide an advocacy and accountability tool for civil society.

30Oct

Advancing Awareness of the UNESCO Internet Universality Assessments in Africa

CIPESA October 30, 2023November 9, 2023

By Juliet Nanfuka |

In 2015, the 38th General Conference of the United Nations Educational, Scientific and Cultural Organization (UNESCO) endorsed a new definition on the universality of the internet. It was based upon four principles, namely Rights, Openness, Accessibility to all and Multi-stakeholder participation, or the ROAM principles.

The addition of cross-cutting indicators in 2018 resulted in the ROAM-X Indicator framework comprising 303 indicators that assess the extent to which national stakeholders, including governments, businesses and civil society, comply with the ROAM principles. It was recognised that these indicators were central to the growth and evolution of the internet, and the achievement of the Sustainable Development Goals.

Over the years, UNESCO has partnered with the Collaboration on International ICT Policy for East and Southern Africa (CIPESA) to increase awareness of the Internet Universality Indicators (IUI’s) and the ROAM-X framework. In 2015, at the CIPESA-convened Forum on Internet Freedom in Africa (FIFAfrica), the ROAM principles were featured in the opening discussion of the event, with then UNESCO regional advisor for Communication and Information, Jaco du Toit, explaining the practical use of the Internet Universality principles of human-rights, openness, accessibility and multi-stakeholder participation and their link to African development.

The 2018 edition of FIFAfrica again provided a collaborative platform for experts, policymakers, activists, and technologists to exchange ideas and strategies for advancing a more inclusive and accessible digital space. CIPESA also contributed to discussions at the 2018 Internet Governance Forum (IGF) where the link between internet shutdowns and the need for national assessments through the use of the ROAM-X framework was stressed.

At the October 2020 Africa IGF, CIPESA contributed to a discussion that served as a launch of the IGF Dynamic Coalition on Internet Universality Indicators (IUIs). The Dynamic Coalition is a shared space for advocating Internet Universality ROAM principles worldwide, sharing experiences and raising awareness of the value of the related indicators and good practice in applying them in more countries. Further discussions were held at the global IGF in November 2020.

In March 2022, CIPESA hosted a regional dialogue on the Indicators, which highlighted lessons from countries where IUI assessments had been conducted, namely Benin, Ethiopia, Ghana, Kenya, Niger and Senegal. This effort aimed to garner best practices in conducting national assessments of media and internet ecosystems using the indicators.

Later that year, CIPESA convened a regional training webinar to raise awareness of the Internet Universality ROAM-X indicators and their potential to promote internet development to advance media freedom and digital rights in Africa. The UNESCO Information for All Programme (IFAP) and International Programme for the Development of Communication (IPDC) jointly supported the training which targeted participants from Cameroon, Malawi, Namibia, Somalia and Uganda. Outputs from the webinar went on to feed into discussions at the 2022 IGF which included sessions on the ROAM-X indicators and a session on the Internet Universality Indicators as part of the Dynamic Coalition.

At the 2023 edition of FIFAfrica held in September in Tanzania, UNESCO hosted a session titled “Foster Internet Freedom in Africa through UNESCO’s ROAM-X Internet Universality Indicators Assessments”. The panel consisted of UNESCO experts, including John Okande, Programme Officer, Tatevik Grigoryan, Associate Programme Specialist; and Xiaojie Sun, Junior Professional Officer. Also on the panel were participants from earlier UNESCO/CIPESA collaborative efforts on ROAM-X, including Asrat M. Beyene from the Internet Society Ethiopia Chapter and Addis Ababa Science and Technology University; Grace Githaiga, Convenor of the Kenya ICT Action Network (KICTANet); and Dr. Simon-Peter Kafui Aheto of the University of Ghana.

The various speakers showcased the main findings and recommendations from the IUI assessments they conducted, and impacts of ongoing and completed ROAM-X national assessments in Africa (see some assessments here). They also shared best practices and lessons learnt during the implementation process. Panelists also highlighted that the IUI is due for revision following the amount of data collected over the years and the evolving digital landscape globally. Since its introduction, ROAM-X has been integrated into discussions at FIFAfrica and into CIPESA programming, both of which have served as collaborative platforms for experts and policymakers to advance inclusivity and accessibility in the digital space.

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