Between 2015 and 2020 the Horizon 2020 funded EmERGE project co-designed, developed, implemented and evaluated an mHealth platform to support people living with HIV. The technology is now being used on a commercial, not-for-profit basis in the UK and in two European countries.

mHealth is a general term for mobile and wireless technologies used to achieve improved health goals. For the EmERGE project, it took the form of an app that is downloaded to a person living with HIV’s smartphone, working alongside a system based in clinic to support the medical review of data.

First steps

Professor Martin Fisher began work on an mHealth solution for HIV care in 2012 and it was he who first initiated the collaboration between the University of Brighton, HIV activist and advocacy organisations, and the University Hospitals Sussex NHS Trust. Work started with a small pilot project, designed to move email notifications to a secure, app-based service, where people receive routine, non-urgent blood test results directly to their smartphone, along with other information to make living with HIV easier.

In 2015, the remit and ambition of the project widened when Professor Fisher brought together a consortium of internationally recognised researchers and community advocates. Clinical sites in the UK, Belgium, Croatia, Portugal and Spain took part, working in partnership with the European Aids Treatment Group and their member organisations at each site.

Why was the app needed?

‘Our research showed that in each local setting there were obstacles affecting people living with HIV, regarding access to health services, which could affect their health and ability to manage their condition,’ says Dr Mary Darking, Director at the CDMC. ‘Our goal was to identify and research those obstacles and create a practical and effective mHealth tool for overcoming them.’

For example:

• Access to blood test results, exact medication details and doses are all essential to making decisions and having informed conversations with healthcare practitioners. Yet historically this kind of information has been held exclusively by medical providers with patients having to ‘ask’ to access it.

The EmERGE app was co-designed with people living with HIV to ensure secure, reliable access to healthcare information is placed ‘in their hands’ via their smartphone.

• Our research showed that living with HIV requires effort and commitment that can be hard to maintain at times. Time of work and travel to clinic for appointments and blood tests require a lot of organisation and depend on having up-to-date, accurate information at your fingertips.

Working with community partners and people living with HIV we co-designed the EmERGE app in an easy-to-use format that enables users to manage health appointments through notifications, reminders and links to online calendars. FAQs and accurate information on a range of local healthcare providers and community-based services is also available.

The power of partnership

The EmERGE project was comprised of seventeen partner organisations. These included centres of clinical excellence, prominent local HIV advocacy organisations, as well as world-leading researchers in biomedical engineering, social science and health economics, from the UK, Spain, Belgium, Portugal and Croatia.

‘Partnership was vital for ensuring the technology we developed was usable in different clinics, operating in a range of healthcare contexts and using a range of IT infrastructure and support. The project’s combined research and expertise was essential to understanding the clinical care pathway at each site and what introducing a digital care pathway would mean. It was this that enabled us to create an app and clinic-based system that were effective, highly-usable and of immediate, practical relevance to each clinical site,’ says Dr Mary Darking.

‘Centre for Digital Media Cultures researchers co-led the co-design and sociotechnical evaluation, alongside the European Aids Treatment Group (EATG). The EATG supported a network of community organisations from each country to be involved, and through them we were able to gather information from people living with HIV in each country and develop technologies that met patient and clinician needs.

‘Our partnership-based, co-design approach makes EmERGE stand out amongst similar research. People who use the technology were put at the very heart of the research and design of the app, which is what led to the creation of such a successful product.’

Commercialisation and expansion

The EmERGE project is exceptional because it produced a working technology that was co-designed, developed, implemented, evaluated and successfully commercialised on a not-for-profit basis during the project lifespan. This last aspect of the project – commercialisation – ensured not just the project’s success, but also its future expansion and development.

‘Commercialisation was a condition of EU funding from the outset,’ explains Dr Mary Darking, who led on the commercialisation of the technology. ‘The technology and care pathway developed had to be sustainable in the longer term, so that the benefits remained available to HIV patients and clinicians once the research and development part of the project was complete.

‘We chose a not-for-profit business model because it was the most compatible with the values of clinicians and app users. EmERGE mHealth Limited opened for business in 2019. The company provides the app alongside the clinical system for medical review that underpins it, on a commercial not-for-profit basis to University Hospitals Sussex NHS Trust, the Institute of Tropical Medicine Antwerp, Belgium and the Clinic for Infectious Diseases Zagreb, Croatia.  In the case of Croatia, where HIV services are centralised, the digital health platform offers HIV services at a national level.

‘Working with this commercial structure we’ve been able to re-purpose the research and development that went into creating the EmERGE technology to create a further app and clinical system. Rather than HIV care, this product supports HIV prevention through making access to the medication PrEP (Pre-exposure Prophylaxis) straightforward.

‘We used the same approach – which we refer to as place-based, digital care pathway co-design – and here again, though at a smaller scale and this time under pandemic conditions, it was highly effective.’

It was during Covid-19 lockdown conditions, when clinics and people living with HIV needed to stay connected, even though travel and face-to-face care were not possible, that the value of EmERGE was really felt. ‘In Croatia, where HIV healthcare services are centralised and based in the capital city Zagreb, people living with HIV can live up to 600km away from clinic. Telephoning people with results when family or other people they live with are home is not always feasible, especially when people have not disclosed their HIV status to the people close to them. The EmERGE app is private, reliable and secure. It supports app users and clinicians to remain connected even at a distance’.

‘To have expanded our work into HIV prevention is yet another step forward and we hope that, through the not-for-profit digital start-up created, the reach of our research and development will continue to expand, benefitting a growing number of app users with a widening range of healthcare needs.’