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 (27)

Kenechukwu Esom Moderator

On behalf of the moderators, I wish to thank everyone who posted, responded to and shared a comment during this e-discussion. We appreciate the perspectives and the examples of the use of digital technologies in health that were shared.

As was stated in the introduction, this e-discussion will feed into a Guidance on rights-based and ethical use of digital technologies in HIV-related programmes that UNDP is developing.

If you were unable to contribute to this e-discussion or if you did but would still like to share an important perspective or information on the questions, please send an email to Kene - kenechukwu.esom@undp.org.

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

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.

 

 

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.

Manish Pant

Thanks Sophia...you have captured eVIN well. To respond to the specific point you raise on data policy Re eVIN - eVIN is a big-data platform that captures all relevant vaccine supply transactions and storage temperature data from every health facility and projects it in real-time dashboards for program managers at all levels - district to national. On behalf of government of India, UNDP CO manages about 10TB data (as of today) in strict accordance to the guidelines issued by the ministry of health. 

India has a national eHealth framework which guides software and data as part of wider eGovernance. All health data resides in government's own secure servers or those empanelled by the IT ministry ( like we use AWS cloud server for eVIN). We run security audits on eVIN server from time to time to check its security and hacking potential. Over a period of time we have built in various security features like CAPTCHA, alphanumeric passwords, better firewalls etc. The access to the system is restricted to only those government staff who manage vaccines and senior program managers. We also need to conform to the EHR (electronic health record) guidelines of the health ministry - to an extent as eVIN currently doesnt store any patient/beneficiery data.

However, with the Govt of India now planning for introduction of COVID vaccine next year, eVIN will now have the responsibility of managing vaccine supplies and utilization at the last-mile. As the government would like to have a name-based list of beneficieries, we are now working on an additional module on eVIN in compliance with EHR guidelines and data safety for recording beneficiery details as well. The system will also generate QR-coded vaccination certificate to each beneficiery as a proof of them being vaccinated.

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. 

cecilia oh Moderator

Week two summary

Much thanks to colleagues who have contributed to the discussion this week. There are two themes that can be discerned from the discussion. There is no shortage of examples and successes in the leveraging digital technologies for health systems strengthening. But alongside these are questions raised about the need to ensure that considerations for non-discrimination, privacy, data ownership and others are addressed in the design and roll out of digital technologies. Looking back at the questions posed for this e-discussion, we hope to hear from colleagues on how key stakeholders were involved in/contributed to, the design and roll out of digital technologies, and how the concerns relating to  non-discrimination, privacy, data ownership and protection, etc. were incorporated into the design and implementation.

Nina Sun and Joseph Amon will be moderating this week, and we look forward to hearing more from colleagues. 

Nina Sun Moderator

Good morning, good afternoon and good evening to participants. To follow-up on Cecilia's summary, does anyone have any good examples of how communities have been able to be involved in the design, implementation and/or monitoring of digital technologies for HIV and health?

There's been a lot of (well-merited) discussion around privacy and data security concerns, but less discussion on how the design of technologies themselves have been community- (and human-)centered. Looking forward to hearing from you all.

Sally Shackleton

hello everyone, I am following the conversation here with interest, thank you!  In contribution to the discussion on how communities have been involved in design, implementation and/or monitoring of digital technologies, I wanted to add information about REAct, while not an e-Health application, it is an example of digital tools for HIV responses that are designed for community use, and with community engagement. Rights-Evidence-Action - REAct is a documentation tool for communities, to record and respond to human rights abuses of people in the context of HIV. The tool was developed over time by Frontline AIDS. At first we used the open source tool Martus, but this was discontinued. More recently we used DHIS2 to create Wanda which is what most REAct users apply. The change to Wanda (named for Colombian human rights activist Wanda Fox) gave us the opportunity to learn from community organisations who had used the first iteration, and make the changes they wanted to see.  These users were community based NGO's mostly serving marginalised and excluded populations in the context of HIV. The tool is currently being used in a number of countries, including Georgia, Tajikistan, Ukraine, Kyrgyzstan, Moldova, Kenya, and Mozambique, and more soon.  Just to point out that the materials that guide the use of REAct were also reviewed by users (and translated to French and soon will be available in Arabic) and Wanda is also translated into 5 languages .  I also wanted to share the Frontline AIDS Systematic evidence map for ehealth for young people and key populations, the intention of which was to offer some guidance as to what works in applying digital tools to HIV programming. It was developed in 2018, so it does need an update (things advance quickly in this sector!), but is a useful source of evidence. Link to evidence map: https://frontlineaids.org/resources/systematic-evidence-map-ehealth-for-key-populations-and-young-people/ Link to case studies for REAct: https://frontlineaids.org/resources/integrating-human-rights-monitoring-into-the-national-hiv-response/

Calum Handforth

Hi all,

A very interesting and important discussion - apologies for coming to this very late! Particularly in the context of leveraging technology and innovation for healthcare (or service delivery), I think there are four things that are particularly important considerations.

First, is the importance of focusing on the citizen: understanding their needs, and realities. This includes how they will engage with any diagnostic or treatment pathway, but also how best to engage them in the first place (and keep them engaged - particularly for longer-term conditions). When exploring this: what technologies, mediums, channels, or other aspects are important to them? Still, far too many projects begin with a solution and try to retrofit this to meet this context. We need genuine and meaningful co-design.

Second, is that technology isn't a panacea. This is particularly important to remember in a healthcare context, where no amount of efficiency or innovation can replace basic human engagement. Technology, as with anything else, is a tool: we need to understand where it can add value - and, importantly, where it poses risks or concerns. Contact tracing has really brought this to the fore. Complicated and sensitive conversations are being outsourced to largely unskilled (or deskilled) staff - and treat as an administrative exercise. Contrast this with the carefully crafted diagnostic and engagement pathways built in other parts of communicable disease over many years - in sexual health, in particular. 

As an aside, one helpful quote that has been lost in the focus on apps is this from the developers of Singapore's own contact-tracing app (which sparked efforts around the world to develop similar solutions): “TraceTogether does not replace the contact tracing process. Instead, we see it as an important tool in the toolbox of contact tracers. It is not sufficient to rely on technology alone, as we need the expertise in public health and communicable diseases to make sense of the data collected using this technology,” This also hints at a broader consideration: not using technology to automate and reduce crucial on-the-ground public health expertise.

Third, is the importance of building well - even in crisis. COVID-19, as well as other major challenges, demands a quick response. But, this response should not be at the expense of the rights of individuals. Trust takes years to win, but seconds to lose - particularly in marginalised populations. We can build technology solutions fast, but we must do so with safeguards, accountability, and the same standards we apply to building these solutions at a slower pace. Speed is not an excuse to ignore these principles. This should not be negotiable.

Finally, we need leaders who will thoughtfully and properly engage with technology and innovation. This doesn't mean everyone needs to be able to code, but it's no longer acceptable for 'techies' to be owning these conversations. As mentioned above, technology is a tool: everyone should be working to understand its role, its value, and its limitations. It is no longer excusable to silo these discussions to IT or digital teams. They should be central programmatic, organisational, and institutional considerations. The people we're working to support deserve better. Improving this situation could also lead to more meaningful engagement with several of the issues raised by other participants - privacy, partnerships with the private sector, data ownership, etc - and, hopefully, better decision-making around these topics.

More broadly, I'd just like to highlight one area of focus for us at the UNDP Global Centre for Technology, Innovation, and Sustainable Development. We're exploring what digitalisation means in the context of COVID-19 response - but also, crucially, what it means for recovery. We're working with a number of Country Offices on this, including having identified seven key digital foundations that are essential in leveraging technology, innovation, and digital to deliver healthcare services. There's a bit more about our thinking on this, here. We shouldn't think about digital health as an app, or chatbot, or similar - it's a whole ecosystem, founded on these seven elements.

Happy to talk further!

Sally Shackleton

thank you Calum. Indeed, the technology space is not neutral. Like any space, gender  and other systems of power incentivize and inform investment, process, approaches, design and function. I've seen impressive initiatives making this more visible, and we certainly need  greater vigilance in the health and HIV sector on this! Based on our engagement with key and marginalised population organisations though, there needs to be more of an effort to enable greater participation, and meaningful input from communities. When organised civil society is so stretched, and when they have to fight for entry to every space, trying to influence decision making in e-health is challenging. 

Nina Sun Moderator

Thanks for these very thoughtful responses. Sally - great to see REAct tool as one that has been designed with the communities in mind - an illustration of a key theme that has been coming up over and over again - which is that technology should be seen as a tool that can complement and enhance the HIV and health systems, rather than being the sole solution. This is a key point that [~91917] raises in his comment too, which underscores the importance of building trust among communities that use the technologies. Building trust is critical for all users of digital technologies, including health care professionals, policy-makers and, of course, those affected by HIV, COVID-19 and other health issues. Thanks also for sharing your article on the seven key foundations for digital transformations in the COVID-19 response.

Another topic that comes up in discussions related to digital technologies and human rights is the roles and responsibilities of private actors. There have been some conversations around the application of the UN Guiding Principles on Business and Human Rights, and the concept of human rights due diligence. What are people's thoughts on non-state actor rights obligations vis-a-vis digital technologies? Here, I'm thinking of applications not only to private companies, but also philanthropies and other non-state funders for digital technologies. Have you seen useful discussions related to this topic in the COVID-19 response? 

Miguel Blanco
  1. En el contexto de su país o región, ¿qué poblaciones tienen más probabilidades de beneficiarse y cuáles se quedan atrás con el uso de tecnologías digitales en los programas de salud y VIH?

En un comunicado conjunto de ONUSIDA Regional y la RedTraSex, en Abril de 2020, se afirma que “la pandemia de COVID-19, al igual que otras crisis de salud, expone las desigualdades existentes y afecta desproporcionadamente a las personas ya criminalizadas, marginadas y que viven en situaciones financieras precarias”, tal como es el caso de las mujeres trabajadoras sexuales. Además, al no ser reconocido como un trabajo, a las MTS no se nos integra ni somos consideradas en las medidas de protección social que se están tomando en la Región. 

La mayoría de las Mujeres Trabajadoras Sexuales (MTS) en la región, como en el mundo, enfrentamos la imposibilidad de poder ejercer el trabajo sexual, y nos vemos seriamente comprometidas en el costeo de ingresos básicos, como alimentación, vivienda y manutención de nuestros dependientes económicos. 

Además, en algunos países, el contexto de la pandemia y las políticas de distanciamiento social han dejado que recrudezca la violencia institucional hacia las compañeras trabajadoras sexuales.

En el contexto específico de las comunicaciones, una enorme cantidad de trabajadoras sexuales tienen aún mucha dificultad para acceder al uso de tecnologías de información y comunicación, por factores como el nivel educativo, la condición de pobreza, entre otros; y también, para muchas la disminución de sus ingresos ha condicionado su acceso al servicio de Internet. 

Durante 2020, nos ha tocado reestructurar las prioridades. En este sentido, las líderes de (organización) hemos encarado esta realidad de la manera más responsable y nos hemos abocado a buscar cómo atender las necesidades más apremiantes de nuestras compañeras.

Con orgullo podemos decir que en el contexto de la pandemia, la cuarentena no nos ha detenido; al contrario, estamos movilizándonos con más fuerza. La respuesta al VIH la seguimos encarando desde una mirada de salud integral, y por eso ahora debemos reforzar la prevención, la promoción de los derechos humanos, el fortalecimiento de las redes, contando con el empoderamiento y la sororidad como estrategias de soporte y contención frente a la pandemia.

Hemos procurado fortalecer la comunicación con las compañeras a través de las redes sociales, el teléfono, mensajes de texto, Zoom, para saber cómo están, para hacer contención, brindar acompañamiento, y también, velar por que los derechos humanos de las compañeras no sean violentados durante la pandemia.

Desde la RedTraSex hemos abierto un ciclo continuo de capacitación virtual,  a fin de promover:

-          Capacitación a las líderes de las Organizaciones Nacionales para asistencia y participación en los eventos y espacios clave de toma de decisión vinculados con la agenda de las Trabajadoras Sexuales, a través de las herramientas virtuales de comunicación. Estamos teniendo fuerte presencia en los medios de comunicación para visibilizar nuestra realidad y aumentar la conciencia de los responsables de la toma de decisiones sobre las vulnerabilidades y el impacto de las medidas de distanciamiento social y cuarentena sobre el trabajo sexual

-          Formación en el uso de las Tecnologías de Información y Comunicación, en el contexto del trabajo sexual, apuntando a la comunicación efectiva, el autocuidado y la prevención en salud. También, a partir de la experiencia de las compañeras que ejercen el trabajo sexual desde espacios virtuales, hemos compartido estrategias para la sustentabilidad durante el aislamiento social obligatorio. A través de la formación entre pares, estamos generando un espacio virtual seguro para el encuentro, el intercambio, la formación y la contención.

Así también, hemos considerado la realización de Seminarios web que orienten a las compañeras en el manejo de estas herramientas para la continuidad de nuestras acciones y para la sostenibilidad de las organizaciones, en el contexto de la cuarentena.

Al mismo tiempo, estamos articulando la implementación de un Sistema de levantamiento de información sobre casos de violencia y violación a los derechos humanos de las MTS en toda la región, con la posibilidad de derivar estos casos a instancias que puedan hacer seguimiento y documentación. Para esto, contamos con el apoyo de Amnistía Internacional, que cuenta con la plataforma logística y con la experticia para realizarlo.

Nina Sun Moderator

Thanks, Miguel for sharing your experience at RedTraSex. Great to hear about your work with the sex worker community, in terms of working with national leaders, creating a system to track human rights violations, as well as peers training to facilitate use of information and communication technologies. It's also enlightening to hear how communities are innovating during COVID-19 - the pandemic brings many challenges, especially to marginalized and criminalized communities. It is inspiring to hear how organizations and networks like RedTraSex have mobilized to address these challenges. 

To Sally's point, the major theme from this week has been the importance of community engagement in the design, development and implementation of digital technologies. Not only is this critical to taking into account the expertise and experience of their daily lives, but, as Calum mentioned, it is also essential in building trust. Without trust, even the most perfect digital technology will not be used. So building space for greater meaningful participation of communities is key. 

Thanks for all colleagues who have contributed to this virtual discussion. We've collected some excellent examples from across the globe of how digital technologies are used to support HIV and health responses, as well as some significant concerns around related risks. We're currently working with Kene and other UNDP colleagues on a draft guidance on the ethical and rights considerations for digital technologies for HIV - your contributions are well-noted and provide a plethora of examples and ideas to incorporate. If you have any further thoughts on these questions, please feel free to send them to Kene (kenechukwu.esom@undp.org) and myself (nys28@drexel.edu). Many thanks again for this thoughtful discussion.


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