Report

Teaser, summary, work performed and final results

Periodic Reporting for period 3 - EmERGE (Evaluating mHealth technology in HIV to improve Empowerment and healthcare utilisation: Research and innovation to Generate Evidence for personalised care)

Teaser

The EmERGE project is a five year Horizon 2020 funded project which started in May 2015 and completes in April 2020. Within the project we have co-designed, integrated and are evaluating a mHealth supported reduced visit pathway of care for individuals living with stable...

Summary

The EmERGE project is a five year Horizon 2020 funded project which started in May 2015 and completes in April 2020. Within the project we have co-designed, integrated and are evaluating a mHealth supported reduced visit pathway of care for individuals living with stable HIV.
The project has co-designed a platform with community & clinicians and has integrated this into five different clinic ICT systems. Individuals are seen once a year by their clinician rather than every six months: at the interim visit results are checked by a clinician before being encrypted and pushed securely through to an individual’s mobile phone alongside other information including medication & appointments details – thereby providing secure access to an individual’s health data.
The mHealth supported pathway is currently being evaluated in a study in which more than 2200 individuals have been enrolled across the five clinical sites in five different European countries – with the platform successfully integrated and operational at all sites. The study completed enrolment in October 2018 and follow up continues until October 2019.
We have explored the perspectives of people living with HIV and clinicians on the optimal features for the mHealth platform & have included these in the development process. The novel intervention aims to enhance user engagement, uptake and optimise the potential of positive experience and improved outcomes across settings.
The evaluation is assessing impact in terms of patient empowerment, quality of life, person-centred symptoms and concerns and quality of care as well as looking at patient experience and usability. A detailed cost assessment is taking place.
The application & pathway are distinctive in the high degree of community involvement in the co-design process and in the evaluation.

Work performed

In the first year of the project we undertook a detailed background assessment and situational analysis to understand how people living with HIV are followed up in the five participating clinics. This included an assessment of clinical pathways; ICT infrastructure and security requirements; information governance; and ethical-legal frameworks at each of the clinical sites. This information was used to develop the application and also for the economic and socio-technical evaluations.
A series of ‘co-design’ workshops and interviews have been carried out at three stages within the project with community groups; clinicians; and participants in the study – these have fed into the development of the platform and the reduced visit pathway in an iterative fashion. Learning from this work has been instrumental in shaping the project.
Our IT partners within the project consortium have developed the clinician facing & patient facing platforms; and have integrated these into the ICT systems at each site. This means that an individual’s data can be checked by a clinician at the site before being encrypted and pushed securely to that person’s mobile phone (application available in iOS and android).
An evaluation of the platform and reduced visit pathway of care started in April 2017 with each clinical site starting sequentially once integration was achieved. Over 2200 individuals have been enrolled in the study and the evaluation is ongoing: enrolment finished in October 2018 – with follow-up continuing until October 2019.
Data are being collected on clinical outcomes; patient empowerment; quality of life; adherence, usability & patient experience. Additionally data are being collected using an HIV-specific PROM & pre-frailty questionnaire. Detailed costing studies have taken place at each clinical site as part of the health economics assessment.
The project is capturing learning about the feasibility and acceptability of introducing such a pathway as an option in the menu of care for individuals living with stable HIV; and about the challenges and barriers to implementing IT integration and pathway re-design at each of the five clinical sites.
Dissemination of the early project findings has started with presentations at national and international conferences; and at local, regional and national meetings. A list of publications and public presentations is kept up to date on the EmERGE project website. Discussions have started as to how the project can best provide information to policy makers.
Continuity planning is underway and the project consortium has adopted a value’s based approach utilising a not-for-profit entity to provide the service beyond the project. This company will work closely with other consortium partners beyond the project looks forward to future collaborations.

Final results

The EmERGE project is providing a large scale ‘proof of concept’ in a real world setting for a novel pathway of care which uses technology to provide an alternative option in the menu of care for individuals living with stable HIV. The EmERGE pathway takes HIV care and mHealth in HIV beyond the current start-of-the-art, even four years after project start – providing access to data & choice for individuals who would like to reduce the number of visits needed to clinic.
The project aims to demonstrate that quality of care is maintained and to show potential effectiveness in terms of patient reported outcomes (empowerment; quality of life, symptoms and concerns) – reporting on whether such a pathway is feasible & acceptable to patients, clinicians & providers.
Integrating the EmERGE platform into five different IT systems; and five different clinical contexts has shown the adaptability of the EmERGE platform & has provided rich learning about the challenges to implementing such a pathway both culturally and technically in different European countries.
A detailed health economics assessment is being undertaken to understand the impact of the EmERGE model on resources at clinical sites. A detailed understanding of cost as part of the evaluation allows for discussion with commissioners and development of a reimbursable cost structure. An intervention that shows cost and patient benefit in this large validated study is likely to be attractive to providers of HIV healthcare.
The potential impacts currently in the final stages of evaluation of the project are:
• Improved self-management of health. The mHealth platform for PLWH has been developed with the anticipation it will lead to greater empowerment and involvement of PLWH in their own care. This is currently being evaluated in the study.
• Improved linkage to care and doctor/HCP-patient communication and dialogue. The technology has been designed to overcome barriers such as geographical distance to maintain contact and dialogue without the necessity of traveling.
• Improved cost-effectiveness of HIV healthcare. The cost and cost-effectiveness of the mHealth platform is currently being evaluated. If deemed as effective as anticipated this approach can then be implemented in other centres treating HIV patients and potentially also applied to other areas of healthcare, especially for the management of people living with chronic, non-communicable diseases.
• Strengthened evidence to inform policymakers. EmERGE will provide real world evidence to inform the development policies, medical guidelines, legal frameworks, medical standards etc. in HIV care and the use of mHealth technologies.

Website & more info

More info: http://www.emergeproject.eu.