EmERGE is a project funded by the European Union’s Horizon 2020 Research and Innovation Programme under Grant agreement no: 643736.
EmERGE has developed a mHealth platform to enable self-management of HIV in patients with stable disease. The platform – a mobile application - builds upon and integrates the existing mHealth solutions operated by pioneering healthcare providers in the UK and Spain, and adapts a rigorous co-design approach to ensure patient and clinician input to the solution.
Jenny Whetham (Project Coordinator, Brighton and Sussex University Hospitals NHS Trust, UK) provides an EmERGE project update, its current status and on study recruitment.
It’s four years into our five-year project. We have come a long way since 2008 when in Brighton, patients with stable HIV infection started using an email service where their interim results could be checked and sent to them electronically. What was originally three visits to the clinic a year, at that stage, was reduced to once a year. This meant many people who didn’t want to come to the clinic so often could be getting on with their day-to-day lives. At the time there was also a dramatic increase in the numbers of people attending the clinic, emailing results meant we could manage capacity and streamline care. We recognise one solution does not fit all, but for some patients this pathway proved a good thing. The email service, which we called ‘Connect’ (still running) grew in terms of user numbers. We got to the stage where about 25% of people coming to the clinic were using the service. Then we applied for a fellowship for a pilot, and on the back of that came the application for the Horizon 2020 Grant. The EmERGE project itself started in May 2015.
During the first year we carried out a situational analysis into the background of each of the five clinical sites (Antwerp, Barcelona, Brighton, Lisbon, Zagreb). We looked into the set-up of clinical care at each of them, information and governance, ethical and legal aspects, and how the technology might integrate into the clinical databases at each site. Once the background work was done it was a question of developing the app itself and its integration at all of the sites. The technology in itself isn’t complicated, but it’s the relationships and trust that needs building within the clinical sites and with the community that enables this to happen.
Then we were able to start the wider study. There’s quite a large questionnaire pack that we use and we are assessing various things at baseline and annually. I believe there will be some really valuable data that comes out of it at the end of the project. We’re not just looking at the app itself, but also at the change in the pathway of care. This is about much more than offering care in a different way for people living with very stable HIV. We are trying to look at whether it minimalizes costs, or whether this is just shifting costs around the system. I think that the story will be very different at all of the sites. It might work very well, it might be well liked, but it’s how you make the case thereafter so that it can be implemented wider.
Today, there are over 2,200 people using the app in the study across five sites. The experience of the app has been different at each of them, but the variation has brought with it a lot of learning and thinking about why this is. We shall be able to report quite richly on this in due course.
Paloma Chausa (Universidad Politécnica de Madrid, Spain) explains what’s new about EmERGE 2.0.
The previous version of the EmERGE mobile application had three main critical issues:
1) The app was not translated in Portuguese. It was considered as a major problem for the whole consortium. The translation was extremely important in order for the app to be better accepted and used by Portuguese patients.
2) The app signed out some users automatically (iOS environment). It was also a major problem. Patients had to contact their clinicians in order to reinstall the application every time they wanted to use it. Some users even withdraw from the study because of this issue.
3) Some patients did not receive their laboratory results correctly, or sometimes were not able to view the historical graphs of their results.
These issues have now been resolved in the form of EmERGE 2.0. Firstly, the new version includes a Portuguese translation. It also uses a more stable version of Ionic, the platform used to develop the EmERGE application. This seems to have resolved the automatic log out problem. The new version also fixes the laboratory data bug. Now, all patients can see their results and the associated graphs. Graphs have been also updated in order to improve the performance of the app. EmERGE 2.0 also incorporates two new features which improve the log on procedure. These include recovery of the passcode through security questions, fingerprint and other biometric authentication.
We have further analysed other desired features such as appointment and medication reminders, integration with the Liverpool HIV drug interaction database (https://www.hiv-druginteractions.org/) and automatic notifications. This analysis has allowed estimating the technical effort required and hence, their feasibility. A comprehensive document has been put together describing all desired features and the clinical and technical implications. This document will be very useful for making decisions related to the next technical steps and future versions of the EmERGE application. Some of the functions could be available soon if the EmERGE consortium decides to include them in the next release. Currently, the security implications of the proposed new functionalities are being investigated in order to guarantee the security and confidentiality of the EmERGE application.
Benjamin Marent (University of Brighton, UK) discusses Co-Design and Community Perspective.
The community of PLHIV, through representatives of local community groups as well as patients’ enrolled in the study have had an active role in each phase of the project, as part of the so-called ‘co-design process’. In the first phase, important community input was provided to the development of the first version of the app.
We are still analysing data from the second phase of the co-design process, interviews and focus group discussions about the patients’ experiences about the app usage. We now know how we would like to further develop the app functionalities, but the analysis of the findings is still ongoing. We’ve already informed the app developers what works and what doesn’t.
There’s an ongoing discussion for an option of two-way communication between patients and doctors, but this has yet to come to a conclusion. We need to think about how doctor-patient relationships change when they are digitalized, how does it impact on the perceived role of the patient, and the role of the doctor?
The initial findings have already been reported to the European Commission, and more detailed data will be released in several journal articles at the end of the year 2019. There is a lot of collected data, and we will be bringing up different topics.
In the last and third phase we will be conducting additional interviews with people from the HIV community, to reach out to groups that were not well represented in the earlier phase (e.g. women). All of this work should be completed in June 2019, to allow for further analysis.
I have really enjoyed the process of participatory research. It’s really exciting from a scientist’s point of view because this is how you actually get access to people and build trust in order to conduct focus groups.
Josip Begovac of Klinika za Infectivne Bolesti "Dr. Fran Mihaljevic" on expanding use with new users outside the study cohort.
Currently our impression in Zagreb is that almost everybody using the app is quite satisfied with it. Care in Zagreb is different to that in other countries, mainly because we have a centralized system of care. Some people have to travel quite far to come to appointments. In the past we have had ‘phone clinics’ and it was also the way we gave test results. Now patients can get their results on the app.
We are seeing additional interest from other people wanting to use the app, but they did not fit the eligibility criteria as we have only been looking at HIV stable patients for the study. I think this app has the potential to also be of value to these people, as well to the newly diagnosed. The app could be used in the future beyond the current criteria.
The main benefit of using the app with the newly diagnosed is that when the lab results come in, the patient doesn’t have to travel all the way to the clinic to get them. When I see a patient for the first time in my care, particularly if they are outside Zagreb, the app presents the possibility for follow-up a few days later to discuss without having to travel. In our clinic we’ve started pre-exposure prophylaxis. The main thing – when we start pre-exposure prophylaxis - is to do an HIV test. The patient using the app could be sent a message in a few days, again without having to return.
There is certainly potential to expand the app to people who previously hadn’t met the eligibility criteria.
Jenny Whetham and Mary Darking (University of Brighton, UK) talk about Continued Access for Users and Commercialisation and Sustainability beyond April 2020.
During the project there’s always been the question of what will happen once the study finishes. It’s very common in innovative technology projects to reach the end, and not to take care of the transition to the ‘real world’ as the research study has been completed. It was part of the European Commission’s funding design for EmERGE that we should start thinking about the end of the project at the beginning. It’s our responsibility to ensure the app available beyond the lifespan of the project, should people want to continue using it. Obviously sustaining the service at sites will carry a cost and this cost will have to be covered somehow. Providing a service is different to doing research and we will need to create an organisation that can develop and support the EmERGE technology after research funding has ended in April 2020. Last year our initial IT partner left the project, and the technology support was transferred to the Polytechnic University of Madrid, our second IT partner. They are very able to support and continue the app development within the project, but as an academic institute wouldn’t be able to provide service support beyond this. Therefore, the organisation we create will need to be the IT provider.
It has been exciting to think about a not-for-profit strategy for ensuring sustainability. We are working hard at the moment to make that happen. Commercialisation is always political. It’s always tense because you are talking about who is going to gain from the end product. We started thinking about commercialisation from the very start and over the course of the project it’s been a journey, one of building trust, recognising where we are all coming from, and what place it has in the broader world of digital business. For us as a consortium it is important that nobody makes a financial profit from providing the service. The world of digital health is very commercial and people aren’t necessarily coming from a values-based position. We simply want to offer sustainability to the people who’ve worked with us to date and expand what we offer where there is interest for us to do so. So instead of commercialisation, we tend to talk about sustainability and value generation. We want to make sure that the service we offer post-project continues creating value for our community of patient and clinical users and for the healthcare systems in which the service is offered. Over the next year we will be working with community and clinical sites to ensure the right arrangements are put in place to make that possible.
Highlights/ Plans for the last project year April 2019 – April 2020.
June 2019 - The community group will be meeting to discuss community involvement in the last part of the project & sustainability of the app.
July 2019 – EmERGE has submitted abstracts and will have a stand at the AIDSImpact conference in London.
November 2019 – EmERGE will be presenting lots of data on various aspects of the study, also results from an EU-wide mapping of standards of care at the EACS Conference in Basel.
November 2019 – EmERGE hopes that mHealth and new innovative developments for HIV management will be part of the new edition of the EACS Guidelines.
March 2020 – Final Multi-stakeholder meeting (including decision makers) will disseminate project results.
The EmERGE Project has received funding from the European Union's Horizon 2020 Research and Innovation Programme under Grant Agreement No 643736.