Community Research and Development Information Service - CORDIS

H2020

MOPEAD Report Summary

Project ID: 115985
Funded under: H2020-EU.3.1.7.

Periodic Reporting for period 1 - MOPEAD (Models Of Patient Engagement for Alzheimer’s Disease - Sofia ref.: 115985)

Reporting period: 2016-10-01 to 2017-09-30

Summary of the context and overall objectives of the project

MOPEAD has a focussed set of objectives aimed at:
1. Establishing multiple key regional project sites across Europe to identify and test models of efficient earlier identification of mild AD dementia and prodromal AD patients, and awareness of AD, memory complaints, and cognitive decline risk.
2. Assessing key tools, mechanisms and processes for community engagement and patient identification and resource utilisation in various communities.
3. Comparing and contrasting various patient access models; and how they contribute to improved detection, diagnosis, and clinical research.
4. Based on findings, establishing archetypes of patient access models for implementation in similar communities.
5. Advocating and distributing access models for broader application and for replication.
The principles used to achieve this include:
• Establishing regional hubs across five EU countries.
• Implementing, testing and evaluating 4 models for Patient Engagement (PE) involving 2000 patients.
• Testing 4 different methods and evaluating comparable efficiencies in different settings, fostering experiences and best practices.
• The MOPEAD PE models are: 1) AD Citizen Science (online), 2) Open House Initiatives, 3) Primary care and; 4) type 2 diabetes patients in tertiary care.
• Locating hidden AD by going beyond Neurology, to access via General Practitioners and Diabetologist specialists.
• Comparing strategies against the baseline of existing primary care processes.
• Executing strategies designed to explore two groups (Mild and prodromal AD).
• Deliver a rigorous analysis using a combination of conventional and Big Data approaches to establish archetypes from the PE models.
• Capitalise and leverage resources brought to MOPEAD by specialist partners to ensure effective engagement with the relevant stakeholders.
• Raise awareness about the benefits of patient engagement in early detection of Alzheimer’s Disease (AD), memory complaints and cognitive decline for the general public, professionals and policy makers.
• Help bridge the gap between clinicians, practitioners, and health decision makers to harmonise discussions on how to tackle AD challenge.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

• Since the beginning, the MOPEAD consortium members have demonstrated a great spirit of collaboration and partnership. This positive attitude has brought a number of very positive outcomes in terms of both clinical preparation and external engagement.
• The MOPEAD Run leaders have collaborated to develop the best possible protocol design. This was not easy as it was soon realised that the country systems diversity and the legal /compliance rules of the different clinical centres posed a number of challenges that needed to be carefully addressed. We are now very happy to confirm that a common protocol has been delivered with success and submitted to the Ethical Committee in each country for approval.
• The MOPEAD consortium has brought forward the decision to centrally acquire the diagnostic tests to be utilised during both the pre-screening and diagnostic steps. This was a very important decision that needed to consider again, each countries rules as well as validated translations for the most appropriate utilization.
• We have also been involved in a series of external communication activities. This included both scientific meeting communications as well as the production of communication tools delivered through different channels (both digital and face-to-face).
o Dr Mercè Boada, MOPEAD Project Coordinator and Octavio Rodriguez, MOPEAD Patient Engagement Strategies Leader, were key for effectively delivering the MOPEAD purpose creating awareness on the need to improve detection and diagnosis in Europe.
o Dr Boada has also been guest invited in Kobe, Japan, as an expert voice in early patient engagement through the MOPEAD project. This raised great attention at both European and international level on the IMI support to improve Alzheimer’s disease detection.
o The MOPEAD Communication team has delivered a number of educational tools to raise awareness of the need for a timely diagnosis. The use of infographics, leaflets and newsletters through our diverse digital channels (web-site, Twitter, Facebook and Linkedin) raised great attention in one year of activity.
• Our digital communication efforts have been measured periodically to help and improve our ability to impact our external target stakeholders. The communication analytics showed a growing improvement on both number and quality of the MOPEAD audience. We demonstrated a steady increase of followers from many countries (both EU and US) and we have been contacted by academic centres willing to cooperate with and support the project.
• In conclusion, MOPEAD has already demonstrated value in creating awareness across lay and scientific audiences, on the importance of a timely diagnosis in Alzheimer’s disease. MOPEAD will continue its campaign while preparing to deliver its first results. Sharing knowledge is key to advance Alzheimer’s disease understanding and ultimately finding a cure. The MOPEAD consortium, with the invaluable support of IMI and its EFPIA partners, will continue contributing by creating knowledge, raising awareness and sharing learnings for the benefit of the patients we serve.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

• Key advance 1: Enhanced Protocols for identifying mild and prodromal AD individuals in the population
o In order to maximise our engagement protocol, we produced a number of materials useful to inform and educate the general public on the importance of timely diagnosis and Clinical Trials involvement. An informative leaflet has also been delivered to all centers for translation and distribution locally with the purpose of enhancing knowledge about the disease and provide a stimulus to those that may benefit from an early diagnosis. A number of infographics have also been delivered through several digital channels. These are aimed at raising knowledge and understanding of the differences between normal ageing versus dementia, as well as about the burden of Alzheimer’s disease in Europe.
• Key advance 2: MOPEAD’s multidisciplinary approach
o We have engaged with external advisors with different backgrounds and expertise, in order to enhance the overall plan. This approach was extremely useful to obtain a diverse point of view and enrich our approach to AD patient engagement.
o A Risk Factor infographic is being prepared and will be delivered in April 2018. This tool, created in collaboration with diabetes experts, will be associated with a digital campaign (website, Twitter, FB and Linkedin) and will support the MOPEAD Runs.
• Key advance 3: The MOPEAD Big Data platform
o The technical architecture of the Big Data platform has been designed and its infrastructure needs have been planned. Using Big Data technology provides an easy way to analyse the multiple complex datasets that MOPEAD will be producing and using. The Big Data platform will support clinical activity, epidemiological surveillance, research and evaluation of economic impact on early diagnosis and providing insight into natural and treatment history of AD.
• Key advance 4: Economic modelling and simulations
o Anders Wimo at the Karolinska Institute has prepared a model for the calculation of the healthcare costs of the MOPEAD Runs. This step will be critical to evaluate the MOPEAD Runs efficiency, establishing optimal archetypes of patient access models for implementation in similar communities.

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