Please respond to one or more of the following questions:

 
A)  Share an example of the use of digital technologies in national health programming:
 

  1. What types of digital technologies have been used in national HIV or other health programmes in your country? Please share examples including links to resources that describe them.
     
  2. Which stakeholders were central to the introduction and adoption [or non-adoption] of these digital technologies?
     
  3. How were issues such as non-discrimination, privacy, data ownership and protection, quality assurance, integration with health systems, conflicts of interest, sustainability and market dynamics, and enabling legal and policy frameworks incorporated into the design and implementation?
     
  4. What capacity development measures were required to implement them and were these adequately provided?

 

B)  Share your ideas on how digital health technologies can address inequalities:

 

  1. Does your country have a digital health policy, strategy or action plan? If yes, please share a link.
     
  2. What are the most important considerations for governments to ensure that the use of digital technologies for HIV and health do not deepen inequalities?
     
  3. In your country context, which populations are most likely to benefit, and which ones are most likely to be left behind with the use of digital technologies in HIV and health programmes?
     
  4. Are you familiar with any resources that articulate/address these considerations? Please share relevant links especially those that concern national, global and regional level policies.

Comments (17)

Kenechukwu Esom Moderator

Week one summary

The first week of the e-discussion raised a couple of important issues including the risks that digital technologies present to marginalised population and groups that are already subject to various forms of discrimination in the absence of a rights-based regulatory framework. Thanks to those who helped kick-start the discussion and the rich examples of the use of digital technologies for making health information available to individuals and communities and for contact tracing in the context of the COVID-19 response. The role of the courts in ensuring that the rights of users are protected especially where national policies on digital technologies for health present potentials for rights violation was also highlighted. As the e-discussion continues over the next couple of weeks, we look forward to more examples of the use of digital technologies in national programmes and particularly responses to our questions including -

  • Which stakeholders were central to the introduction and adoption [or non-adoption] of these digital technologies?
     
  • How were issues such as non-discrimination, privacy, data ownership and protection, quality assurance, integration with health systems, conflicts of interest, sustainability and market dynamics, and enabling legal and policy frameworks incorporated into the design and implementation?
     
  • What capacity development measures were required to implement them and were these adequately provided?

[~82470] will be moderating this week and we are looking forward to continuing this very important discussion.

 

 

Kenechukwu Esom Moderator

Welcome everyone!

I am delighted to be moderating the e-discussion this week. Together with my colleagues - Cecilia, Joe and Nina we will be engaging with you over the course of the e-discussion as moderators. The e-discussion starts today and continues till 14 August 2020. At the end of each week, we will post a summary of the week's discussions including your ideas and comments.

We hope to have a rich and inclusive discussion on this important topic. Almost everyone of us have experienced digital health technologies in one form or the other. We are keen to hear how they are being use in your country context.  Feel free to respond to any of the questions; share links to resources; invite colleagues and other stakeholders particularly those in governments; reply to comments; like comments you agree with; pose questions on comments; let us have a lively discussion.

The conversation can be translated into 100 languages so to read the content of this page in your preferred language click on the Select your language tab on the top right corner of this page. Write in the language you are comfortable with.

Thank you for taking time to share your expertise and experience with us.

Meg Davis

Thanks for starting this important conversation, Kene. I think one of the important questions to consider is the ability of states to regulate the tech sector, which is advancing at warp speed. In the context of the COVID-19 crisis, many countries are moving rapidly to embrace digital contact tracing apps for example. My column for Health & Human Rights Journal raised some concerns about how even anonymized data could lead to greater risks for women and girls and marginalized groups, especially in the climate of anxiety, blame and stigma around the new virus. Here's the link: https://www.hhrjournal.org/2020/04/contact-tracing-apps-extra-risks-for-women-and-marginalized-groups/ - I think we should be urging states and health agencies to do more thorough due diligence into risks and how they can be managed, in keeping with the Ruggie Framework on business and human rights. https://www.business-humanrights.org/sites/default/files/reports-and-materials/Ruggie-protect-respect-remedy-framework.pdf

Kenechukwu Esom Moderator

@Meg Davis, thanks for highlighting the greater risk to women, girls and marginalised groups of the misuse of data. The ability of states to regulate such a rapidly evolving sector is one we hope to explore over the course of the e-discussion.

Boyan Konstantinov

[~92184], these are excellent questions, especially now when digital technologies are present in each and every second of our professional and personal lives.They can be extremely helpful in HIV service delivery. For instance, the Andrey Rylkov Foundation in Russia has been using mobile technologies to reach people who use drugs for service provision for years. Because of privacy and surveillance concerns the platforms have changed several times. Humanitarian Project, another HIV NGO from Novosibirsk, is successfully using a mobile app to advise people on HIV, co-infections, treatment, service organizations in different parts of this (geographically huge) country, but also to provide peer support and fight quackery and HIV denialism. In South Korea and Singapore digital tracing applications have been part of a test-trace-isolate-support process in in fighting COVID-19 and many attribute the success in curbing disease transmission also to technologies. Concerned with privacy issues, the Czech Republic, Israel and Singapore made the the codes for the proximity tracing products open source, allowing expert analysis but also distribution. There are at least three issues here, in my opinion:

How to avoid the hard-to-resist appeal of digital technologies and to make sure they complement - and not substitute - human knowledge and efforts.

How to ensure that data privacy and people's safety and security are protected. This is becoming increasingly difficult, as there are various data protection standards - GDPR, CCPA, UK DPA, etc. Absent a uniform data privacy standard (perhaps a task for the UN in the future?) one possible avenue are self-enforced codes of conduct to which data collecting entities voluntarily subscribe - e.g. the project for such a Code for the LGBTI Inclusion Index.

Only when there is privacy, trust and ownership can digital technology serve better people who live on the margins of society and fully contribute to positive social changes. The slow uptake of COVID-19 apps in some countries with data privacy challenges, or high privacy expectation seems to support this assumption.

taslim owonikoko

The world's fast transitions to digital space would be very exhaustive when class  differences are part of whole context that must be addressed . Aiming to deploy a fantastic dogital tech for wide consumption would entail tech integration that must make provisions for joint use as  luxury in a competitive advantage and also allow for economically disadvantaged groups' meaningful adoption. 

  . A cheap or affordable must-have products for bottom of the pyramid businesses and governments alike would fly .. While the digital health and health tech are well thought out for discussion , May we share  our pet project on  BioSafety of Touchscreen digital marketplaces with emphasis on curbing COVID19  spread among users of high contact digital surfaces  like Fintech Machines ,ATMs  Ticketing  desktops  airports , Museums  etc 

See our  Twitter link showing project Demo via interactive on the Novelty with @InterswitchGRP  

https://twitter.com/taslim0/status/1285859714585239553?s=20

 

 

Kenechukwu Esom Moderator

[~91596]  thanks for sharing these examples of applications that improve access to information and services for populations in challenging situations while being responsive to concerns about user privacy and surveillance. Data protection is critical to the discussion on rights-based ethical use of digital technologies in health programme. You allude to a possible role for the UN. It will be good to hear that others see as possible roles for the UN on this issue.

 

@Taslim Owonikoko - Touchscreen Biosafety is quite an innovative solution especially in the current context of Covid-19. There are a number of solutions being developed locally  to respond to local health issues, what does it take to get these to scale for use in national programmes? Looking forward to hearing from others about projects supporting local developers to take their innovative solutions to scale

David Owolabi

Thank you Kene for facilitating the e-discussion on this topical issue. Let me share some examples of how countries have applied contact tracing apps for surveillance during covid-19 and the kind of guidance that the UN can provide to address the obvious gaps.

Effective response to public health emergencies requires timely and relevant data. As the COVID-19 pandemic has progressed, the effectiveness of national efforts to fight the virus has relied on the ability of governments to measure its spread and use that data to target their public health efforts. Contact tracing is the process of identifying, assessing, and managing people who have been exposed to a disease to prevent onward transmission. When systematically applied, contact tracing will break the chains of transmission of COVID-19 and is an essential public health tool for controlling the virus. Countries that have performed better in the early days of the pandemic have done so through a combination of more widespread testing, more effective contact tracing (i.e. identifying and monitoring people who have been in close contact with someone infected), and isolation of infected patients. Asian countries have gone the farthest in their contact tracing efforts, building upon systems and tools developed in the aftermath of dealing with SARS and (in the case of South Korea) MERS that rely on a combination of on-the-ground detective work and the use of invasive digital tools to track people’s movements. 

In South Korea, the government obtains information from a variety of sources including CCTV footage, cellphone records, and credit card receipts of “confirmed COVID-19 patients” to post “the precise movements (without names) of everyone who tested positive - everything from the seat numbers they occupied in movie theaters to the restaurants where they stopped for lunch.”https://www.smartcitiesworld.net/news/news/south-korea-to-step-up-online-coronavirus-tracking-5109 ;  In Taiwan, the National Health Insurance Administration (NHIA) and the National Immigration Agency combined their databases to enable the government to track the 14-day travel histories of citizens alongside health information tied to their NHI identification card. Individuals identified as high risk are then monitored electronically through their mobile phones. https://jamanetwork.com/journals/jama/fullarticle/2762689?guestAccessKey=2a3c6994-9e10-4a0b-9f32cc2fb55b61a5&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=030320.  In India, a district government in the state of Kerala used geo-mapping of quarantine locations, CCTV recordings, and call record data to “track down over 900 primary and secondary contacts of a family who returned from Italy carrying the COVID-19 infection.” https://indianexpress.com/article/india/kerala/covid-10-coronavirus-kerala-pathanamthitta-district-surveillance-precuations-6311041/

One key challenge about these digital health tools is the potential for compromise of data privacy especially in contexts where there is lack of legal framework. A starting point to redress this could be the revision of the WHO’s Guidance for Surveillance During an Influenza Pandemic and its Guidelines on Ethical Issues in Public Health Surveillance, both published in 2017. The latter document outlines a set of 17 guidelines aimed at “helping policymakers and practitioners navigate the ethical issues presented by public health surveillance.” Among others, the revision should highlight and address the risks that governments create when they rely on private corporations to conduct digital surveillance; the need to unwind extraordinary surveillance activities after a crisis has passed; the imperative for governments to enact legal frameworks that govern the use of digital surveillance during a health crisis in line human rights principles. Countries should be supported to apply the WHO guidance and guideline in formulating legal and policy frameworks for digital health surveillance tools.

  1. https://privacyinternational.org/examples/apps-and-covid-19
  2. https://www.cgdev.org/blog/covid-19-information-problems-and-digital-surveillance
  3. COVID-19 Conference 2020 Session on Country policies and practices: Different pathways and similar intentions
Tracey Burton

Thank you Kene, a interesting and relevant discussion, and i would like to share "Legal challenge to the National Integrated Identity Management System (NIIMS) in Kenya"

At the 6th Africa Regional Judges Forum held in June 2019 in Johannesburg, South Africa and supported by the Global Fund funded Africa Regional Grant on Removing Legal Barriers, one of the topics on the agenda was: “Privacy and data protection and rights in an era of digital health”. This was discussed within the context of the “Relevant findings of the Global Commission on HIV and the Law: 2018 Supplementary Report” and “Kenya Human Rights Commission (KHRC) and Others v Attorney General” a case instituted against the shortcomings of the roll out of the NIIMS in Kenya. At the end of the presentations and follow up discussions, the eminent judges from across Africa agreed that there is the need for legal framework to guide digital health and that the UNDP could be a better institution to support that process. The Africa Regional Judges Forum is a forum of senior judges across Africa which functions as a venue for senior members of the judiciary in the region to discuss issues of HIV, TB, human rights and the law. They have annual meetings owned and planned by the judges themselves, with support from the United Nations Development Programme (UNDP) and supported under the Africa Regional Grant on HIV: Removing Legal Barriers, a Global Fund funded regional grant that addresses human rights barriers faced by vulnerable communities in Africa, and facilitates access to lifesaving health care.

The National Integrated Identity Management System (NIIMS) is a system intended to create and operate a national population register as a single source of information about Kenyan citizens and foreigners resident in the country. Among others, the system aims to facilitate health, social protection and other service provision to the citizens in an integrated manner via a centralized database with linkages to existing databases and national registers. This was challenged by government watchdog agency i.e. the Kenyan Human Rights Commission and civil society groups namely Namati and Nubian Rights Forum, citing the: limited consultation with the public; compulsory registration; mass accumulation of all Kenyan’s identity data into a single, digital database; potential for exclusion; and requests for certain types of sensitive data like GPS coordinates would put residents at significant risk and violate the Kenyan constitution.

The court found in favour of the litigants and affirmed Kenyan’s right to privacy with restrictions on the collection of DNA and location data, calling the practice intrusive and unnecessary.  Similarly, on the issue of potential for exclusion of specific ethnic and religious communities, including Somalis and Nubians, in the ID program, the court found NIIMS, in its current form, could exclude or discriminate, especially those lacking existing government-issued documents. In addition, the court found Kenya’s current legal framework as inadequate to guarantee data protection over sensitive personal data. It required a halt to new data collection until a comprehensive regulatory framework is in place. There is currently a Huduma Bill (2019) and hopefully the bill will address the shortcomings identified in the context in terms of the need to ensure privacy and the potential for exclusion of specific groups and vulnerable and key populations such as the LGBTIs. It is important to make the case for sustained, public participation, data protections and assurance of human rights principle of inclusion before the roll out of digital health/identification programme. This is true of the situation in many other countries globally such as India where similar system has been put in place.

  1. https://www.hudumanamba.go.ke/
  2. https://www.justiceinitiative.org/uploads/8f3b665c-93b9-4118-ad68-25ef390170c3/briefing-kenya-nims-20190923.pdf
Kenechukwu Esom Moderator

[~55541] , Thanks for sharing these examples of digital technologies for tracking and tracing in the context of Covid-19. Indeed, the pandemic created a catalyst for the use of digital technologies at an unprecedented scale, showing both the potential benefits and the risks. You rightly identify the tension that sometimes exists around the relationship between the State and tech companies, and the potential for rights violations. That is why an approach that recognises the role of the State to protect, respect and fulfill the rights of all is important. [~87553] thanks for highlighting the important responsibility of courts to remind the State of this role and to provide a forum for individuals and communities to challenge the adoption of digital technologies that may do harm and deepen exclusion and inequalities.

The sort of litigation in Kenyan is strategic because of the impact that the it had on improving much wider scale. It will be great to hear other examples of courts laying down rights-based standards for the use of digital technologies in health

 

David Owolabi

Thanks Kene, and here is another example of strategic litigation that further underscores the critical importance of the role of the court in tackling violations of privacy in digital health and addressing human rights, stigma and discrimination more broadly.  The High Court of Kenya has as recent as on 30th July 2020 awarded Kenyan Shillings Kshs. 2,000,000 approximately US$20,000- in general damages to a woman living with HIV whose right to privacy was violated by Nairobi Hospital and Liberty Assurance. In a landmark judgment, Justice Weldon Korir declared that the disclosure of HIV status of the petitioner by the hospital and insurance company to her employer without her knowledge and consent was a violation of her right to privacy under section 70(c) of the repealed Constitution. The Petitioner had in 2007 been admitted at Nairobi Hospital who on learning her HIV status disclosed the same to the insurance company who in turn disclosed to the petitioner’s employer. This chain of violation of right to privacy exposed the petitioner to stigma and discrimination, which she suffered immensely at her workplace.

This litigation was supported by Kenya Legal and Ethical Issues Network on HIV/AIDS (KELIN), one of UNDP Partners and Sub Recipients under the Global Fund funded Africa Regional HIV Grant: Removing Legal Barriers which aimed to address human rights barriers faced by vulnerable communities in Africa and facilitate access to lifesaving health care.

https://www.kelinkenya.org/court-orders-nairobi-hospital-and-liberty-insurance-to-pay-kshs-2-million-as-damages-for-breach-of-privacy-and-confidentiality-%ef%bb%bf/ utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+kelinkenya+%28Kenya+Legal+%26+Ethical+Issues+Network+on+HIV%2FAIDS%29

Emma Day

Thanks for a really interesting discussion so far.

I do a lot of work as a consultant for UNICEF, and I am currently looking at children's data privacy rights in the context of health tech. I would be very interested if anyone is able to point me to any cases in which children have been given special treatment and extra data privacy protections in a public health context - this includes adolescents under the age of 18. 

In the context of Covid19 I am finding that a lot of countries are engaging in public private partnerships which can evolve quite rapidly. One of the most concerning of these is Palantir who have offered $1 contracts to nations and development organisations to assist with the processing of health data related to Covid19. In the UK the government's contract with Palantir was the subject of a freedom of information request and was found to have breached UK Data Privacy laws. The idea of a national policy on digital health is an interesting one, but there does seem to be a role for the UN in setting guidelines, especially when governments contract with digital health providers from outside their own country, as well as guidelines on the use of digital health tools in emergency contexts. 

In the development context, health tech is being used for things like tracking immunisations through public private partnerships. This can be a really powerful tool to provide health solutions at scale, but the scaling up process can often involve sub-contracting multiple private sector partners from different countries, which can lead to confusion around which privacy policy applies, which is the governing jurisdiction, and how anyone would be able to hold the different players involved accountable. This article about 'Khushi baby', a wearable digital necklace for babies to track immunisation in India is an interesting example. The tech tool started off with a focused purpose on immunisation, but then expanded to ‘"tracking maternal and child health, chronic disease, TB and HIV medication adherence, conditional cash transfers, ration cards, emergency medical response and hospital readmissions’". 

Sophia Robele

Many thanks for this important discussion and the interesting examples shared thus far.

As an example that many are familiar with, I think the story of eVIN’s success in India is one that speaks to the importance of change management/governance and capacity development in the roll-out and adoption of a new technology.

The ingenuity of the eVIN was not merely piloting a new open source software for the electronic logistics management information system (eLMIS) for vaccines but also introducing a new human resource network to manage the functioning of the e-MIS, as well as to reinforce compliance with existing standard operating procedures. Based on the capacity needs in the country, UNDP India created a structure that consisted of UNDP support staff and designated government counterpoints at the district, regional, state and national level. UNDP focal persons for districts, regions, and states were embedded into the government offices at their respective level to facilitate capacity development. Within each district vaccine store, UNDP placed a Vaccine and Cold Chain Manager to work with district health officials and cold chain technicians, while at the regional level, a UNDP Project Officer for operations and respective government counterpart provides oversight to 5-10 districts. For each state, a UNDP team consisting of a Senior Project Officer, an IT Project Officer, and an administrative focal person, work alongside state immunization and cold chain officers at the state vaccine stores.

In addition to the empowerment of eVIN managers at the national and managerial level, the effective uptake and sustained use of the system depended most fundamentally on its ownership by users at the last mile of the supply chain. A key lesson learned from the roll out of eVIN in India was the significance of empowering people locally at every level of the chain to encourage strong adoption of the reporting tool and use of its data. One aspect of this empowerment lies in the design of the application itself and its utility and relevance to the daily work of health facility staff. Beyond reducing the burden of data entry processes through the easy to use application, eVIN also enables the last mile health workers to access contextualized data analytics, such as alerts on low stocks, expiries and the delivery status of products. The human network element of eVIN also instills an ethos of connectivity across levels of the supply chain, as reinforced by information feedback loops that characterize the system. By not only making data visible across each level of the supply chain, but also bringing greater visibility to the work and importance of those who enter the data, the LMIS platform helps to foster a greater sense of responsibility and ownership. Health workers are able to see their reporting efforts as an integral piece of a larger process, whilst managers are able to easily track health facility performance and even give recognition of good work through the app.

It would be interesting to hear more from [~93911] or other UNDP India colleagues on how issues of data ownership and enabling legal and policy frameworks were considered in the implementation of eVIN.

We also have some good examples in our Global Fund portfolio of leveraging digital technologies as part of health systems strengthening efforts, such as the introduction of real-time monitoring of malaria data in Guinea Bissau linked to the national health information system database (DHIS-2), or mobile payments for health workers in Chad. Copying in [~58635] and [~76080] to speak more to the privacy and data protection considerations in these examples. 

Additionally, attached is a recent case study from Zimbabwe on UNDP's multi-faceted support to digitalization of the health management information system, in case [~93713] or other UNDP Zim colleagues want to speak more to it.

cecilia oh Moderator

Hello everyone - Thank you for your continued contributions to this e-discussion in Week 2! @Emma Day has raised the issue of children's data privacy rights, given the use of digital technologies to track immunization and to strengthen maternal and child health efforts. It would be great to hear about how this has been addressed.    Thanks also to [~85214] for highlighting the success of eVIN in India, but also raised the issue of data ownership in that context. Perhaps colleagues from UNDP India, and also Indonesia, may have insights to share on this matter.   

We also look forward to hearing from other colleagues to help provide answers to the question of how issues such as non-discrimination, privacy, data ownership and others been addressed in the design and roll out of digital technologies. 

Meg Davis

hello all, great discussion! totally agree @emma on Palantir - their track record in the US is concerning, including close partnerships with ICE, CIA, etc. and now expanding their role in health in the COVID-19 crisis.

On children's rights, just wanted to share this excellent collection of essays from 5Rights on freedom, security and childhood in the digital age: https://freedomreport.5rightsfoundation.com/ 

Camilla Malakasuka

Thank you for this important discussion and very interesting examples. I would like to share on the use of digital solutions in boosting public healthcare.

An E-learning platform has been established in Georgia to enable medical staff develop skills to cure infectious disease. After a successful response to the COVID-19 first wave, the platform is an urgent step taken to ensure that Georgia’s frontline medical personnel are not only prepared to respond to a potential second wave but also responding to other future health emergencies including HIV. The platform is being established by National Center for Disease Control (NCDC) with assistance from UNDP Georgia through Swedish funding.

This platform will provide doctors, nurses and administrative staff with an opportunity to attend training courses and certification programmes as well as communicate, exchange experience and receive practical advice from NCDC experts. This initiative covers 37 medical institutions and the NCDC’s 60 regional centers. The e-learning platform will deliver health emergency response training to 3,000 medical workers from the designated clinics for COVID-19 treatment and another 1,000-medical staff from regular healthcare institutions.

This digital solution by Georgia, aids capacity strengthening which will in turn assist with building a resilient health system. Ensuring sustainability of the platform and continued capacitation of healthcare workers beyond COVID-19 is crucial. The resilience is derived from the ability of the health system to be able to respond to future health emergencies. COVID-19 has illustrated the importance of health systems being ready for unexpected health emergencies and this initiative by Georgia is a step towards ensuring this.

Link: https://www.ge.undp.org/content/georgia/en/home/presscenter/pressreleases/2020/covid-healthcare-elearning.html

 

 

 

cecilia oh Moderator

Camilla Malakasuka: the e-learning platform in Georgia would appear to be a good example of a digital solution that allows for rapid responses in the current pandemic situation, but which will have longer-term implications for health system strengthening. Thanks for this. Are there lessons from this experience in Georgia and in other countries that we can highlight in terms of ensuring the involvement of key stakeholders in the introduction of these digital technologies or solutions? 

@Meg Davis: many thanks for sharing the essays on children's rights, most useful. I would like to pick up on the point you raise (also raised earlier by @Emma Day) on the expanding/evolving role of private sector actors in the provision of digital health technologies and the attendant concerns for privacy, data ownership, etc. What are measures that could be adopted by governments as well as the UN? Looking forward to hearing from colleagues on examples of such measures. 


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