Continuity of care – people on the move: ‘An obstacle course’

Ensuring a continuum of effective care for people living with NCDs is always a challenge because NCDs require lifelong support. In crisis situations, this challenge is greatly exacerbated: displaced populations often have to move between health facilities or humanitarian agencies, making it harder both to access and provide care.

What? A policy ask

We call on member states to fund WHO and partners to develop a secure, personalised, mobile health data system for humanitarian settings, building on new technology.

Why? The rationale

There is currently no cross-border system in place for people on the move or living in protracted emergencies, with patients relying on paper records that are often inaccessible, incomplete or destroyed – and, even where they are available, are in a language unfamiliar to health professionals in the host country. There is a clear need to move from a system-based approach – as systems are often broken – to a person-centred approach, increasing patients’ knowledge and capacity, empowering them to better manage their own health (avoiding the prescription of multiple drugs for the same condition, for example), and smoothing the transition into a host country. Now is a good time: new, innovative technologies such as Blockchain could be utilised to facilitate secure, reliable access to patient data.

Discussion

Privacy issues are a major concern: who would hold, own and store the data? Confidentiality is essential if patients are to trust the system – for example, if patients access their files through fingerprint data and governments can manage to gain access to this information, it could be used to identify and deport refugees: there needs to be a strong firewall in place. But once patient trust is established, this trust will follow them across borders, easing the transition into a new health system.

“People on the move need help to negotiate ‘the continuity of care obstacle course!”

Bootcamp participant

The data may ultimately need to be integrated within the host country’s system – hence, longterm compatibility should be considered when designing the system.

The complexity of information management is paradoxical in an era of such effective information technology. However, the use of innovative technology could appeal to existing initiatives – for example, in Silicon Valley – which could lead to new, fruitful partnerships.

“Treatment of NCDs needs to have a person-centred outcome and approach”

Bootcamp participant

How? Campaign ideas

This campaign focused on influencing WHO indirectly through a member state: Denmark due to its ‘global leadership in NCD care and research’. The Danish Ministry for Foreign Affairs (MFA) would be an appropriate specific institution to target as IT technology/diplomacy and publicprivate partnerships feature prominently in the Danish Strategy for Development Cooperation and Humanitarian Action and links well with existing initiatives, e.g. the Danish tech-ambassador in Silicon Valley. Ideas for campaign activities include components of awareness raising and partnership- building:

A pop-up event at the political festival Folkemødet in 2019, outside MFA’s office, or to coincide with the High-Level Meeting on NCDs in September 2018, would create awareness about the challenges in ensuring continuity of care in humanitarian settings. This event would give the opportunity to interact with and hear the voices of health workers and displaced people living with NCDs, building a clear, empathetic narrative around the need for action.
Interested civil society activists and private sector partners could write an open letter to the Danish MFA, calling for its active involvement in developing a secure, personalised data system for people living with NCDs in humanitarian settings.
Partnerships could be strengthened and formed through incubator sessions: bringing together the tech-sector, civil society and government agencies to consider how such a system could be designed and implemented. The campaign could be extended to other countries and development agencies (such as Department for International Development (DfID) in the UK), and give them the opportunity to showcase their own technology.