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EmERGE newsletter - May 2018

Updated: Jan 2, 2019

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 will build upon and integrate the existing mHealth solutions operated by pioneering healthcare providers in the UK and Spain and apply a rigorous co-design approach to ensure patient and clinician input to the solution.

The EmERGE partners had a second review of the progress of the work with the European Commission on 26/01/2018.

The overall review from the EC was good – noting that the project has achieved most of its objectives and milestones for the period with relatively few changes to the original plan. They said ‘The project continues to make progress toward final goal with delays. The commitment of the partners to the project and the amount of work performed in the second reporting period is very satisfactory. The main deliverables and milestones have been achieved. The partners made considerable effort to reduce delays from previous period’. Click here for a summary of the report.


Comments from the sites:

Barcelona – “The recruitment in Barcelona started on July 2017. At the beginning it was very fast because patients were very excited with the experience of a new app. After that, the rhythm became slower but still growing. By now we have recruited 375 patients, most of them men, and the number is still increasing. The usual pathway is offer to the patient to participate in the study, when he / she is in the routine visit, but more and more the patients explain to their friends the experience and encourage them to ask us about the project.” Brighton - “Exciting times for the EmERGE study in Brighton as recruitment is going really well with increasing number of patients and clinicians keen to try out the mobile phone application. We have witnessed fabulous examples of the clinic & community working together to feedback information on potential future developments of the app and to configure the ‘FAQ’ section on the app to make sure that information available is relevant and helpful. This is a great addition to the ‘menu of options’ available for those living with stable HIV.” Lisbon - "After a delay related due to the integration of CHLC informatics system, we started recruitment on 2017-11-27 and we have recruited 405 people so far, meaning almost 80 people month. We still have a way to go but are very confident about achieving our recruitment goals and about the future of EmERGE App." Antwerp - We started recruitment in October 2017 and included 213 patients so far, of which 23 women and 45 non-nationals. Of note is also that 72 patients are older than 50, proving that age doesn’t seem to be a barrier to use ‘new technologies’… Click here for a summary table about recruitment as at the end of March 2018.


EmERGE presented at the BHIVA conference

The EmERGE poster presenting the results and achievements of the project so far was accepted for the BHIVA conference as an item showcasing the cooperation of various stakeholders in mHealth across different European countries, and with active and key involvement of the communities of people living with HIV in the project countries. Click here to view the poster.


EmERGE – three years... Project Lead Dr. Jennifer Whetham

The EmERGE project is just completing its third year and is making great progress. We are ‘live’ at all five of our clinical sites – with over 1,500 patients accessing their data via an app on their mobile phone to date. Following a strong co-design process – involving 97 community members and 65 clinicians in the first phase - our partners have developed and integrated the clinical web application at clinics in Antwerp, Barcelona, Brighton, Lisbon and Zagreb. The platform pulls data from the hospital IT system into the clinical application where results can be checked before being pushed through to an individual’s mobile phone – data are encrypted in motion and in rest; all compliant with GDPR requirements. Within the study individuals living with stable HIV are seen once a year rather than the usual twice a year; but are able to make contact with their clinic if there are any problems at all. Recruitment to the evaluation started in April 2017 and will continue until autumn 2018 – with follow up until autumn 2019. The evaluation is well underway with data being collected on clinical outcomes; patient experience & usability; empowerment; quality of life and adherence. Detailed costing studies are taking place at each site which will allow us to assess cost effectiveness / cost minimisation. The second phase of the co-design / sociotechnical evaluation focus groups and interviews has just started across the sites and we look forward to seeing the outcomes of these. We are capturing learning about the challenges and opportunities involved in navigating the processes within the hospitals with a ‘wider lens’ piece of work. Look out for us as we start to present on the EmERGE project at National & European conferences – sharing our experiences to date. We are looking forward to the next two years: to ensuring that the EmERGE project provides a thorough evaluation of this novel approach to improving access to data whilst reducing clinic visits; and to making a positive contribution to the evidence in an ever changing world of digital health.

At the end of February 2018 (26-27 February) Jenny Whetham, Jerry Wyatt and Koen Block (representative of the community partner) were welcomed by Dr. Margarida Borges to visit the clinical sites in Lisbon. Recruitment in Lisbon is happening at different locations which makes it a challenge to coordinate the work. The group was invited to visit the ‘Hospital de Curry Cabral’, ‘Hospital dos Capuchos’ and ‘Hospital de São José’. They were warmly welcomed by the directors of the hospitals and received a guided tour within the clinics. Like in all the other sites recruitment has started in Portugal and is steadily going up. The team was happy to show the high numbers of recruited patients they had since the past few months. Additionally to the clinical site the group also visited the local community partner GAT (Grupo de Ativistas em Tratamentos) to see how they could be further part of the promotion and recruitment part, but also the dissemination of interim results and project updates. The next EmERGE Consortium Meeting is to be held in Barcelona on the 19th and 20th June 2018. It will discuss progress in the project so far, and also evaluate the outcomes.


Jef Verellen ITM Antwerp, Data Protection Officer GDPR… not a tsunami, definitely a landslide! Europe’s new privacy regulation GDPR, coming into full force on May 25th, is hailed as the most important European piece of legislation in a very long time. In an era where people’s internet credentials seem to get breached on a daily basis and social media moguls make big bucks selling their “customers” (or should we say “products”) personal data without their knowledge or consent, you can say the new privacy law doesn’t come a day too early. So what is all the buzz about? GDPR wants to give power back to the people by increasing EU subjects’ rights and control over their own personal data processed by pretty much any organization. Secondly, it wishes to increase companies’ efficiency in trade and data processing by creating harmonized and transparent rules across Europe and pretty much the entire globe. And yes, GDPR applies to research no less. So, what’s in it for EmERGE? First of all, EmERGE participants must be fully informed about the project and their data processing. This means the project needs to communicate transparently - and not (only) by elaborate, small font all-or-nothing user agreements in mobile apps - about what data is processed and how it is further used and distributed to third countries. Is the data also used for purposes outside of the project? Clearly subjects can decide to stop participating and have the opportunity to access their data, but it should also be clear to them if they can have it corrected and whether they can have their data erased retrospectively or not. The GDPR is written in a technologically neutral language to assure that it will not become obsolete with rapid technological advancement. Therefore, it states that appropriate organisational and technical measures (in relation to the amount and sensitivity of data) should be taken to protect data. Clearly, EmERGE has to live up to the highest standards regarding data security, with stringent access controls and a strong end-to-end encrypted data flow from patient medical file to mobile app being sine qua non. Be aware that GDPR makes the reporting of serious data breaches to the competent authority - like the national privacy commission - mandatory and sets fines for infringement amounting to € 20.000.000 or 4% of annual turnover. These juicy numbers are grist to the mill of data protection consultants anno 2018, but nonetheless, they make clear that the European Commission is dead serious about the personal data of its civilians. Conducting a research project like EmERGE is a privilege and a responsibility. Confidentiality is paramount and trust a precious good. GDPR seams all those together to the benefit of researchers, the patient community and society as a whole.




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