Full steam ahead – the EPF team prepares for a successful end of COMPAR-EU (2018-2022)

With the end of the COMPAR-EU project foreseen for end of the year, the European Patients’ Forum (EPF) team has begun its preparations for further outreach efforts, and a big event to close our collaboration on this project at the end of the year.

Audio-visual assets to support our uptake

As part of its involvement in the COMPAR-EU project, the European Patients’ Forum (EPF) has produced a series of lay summaries – on COPD, Heart Failure, Obesity, Type 2 Diabetes core outcome sets, and on the Taxonomy process, among others. Producing lay summaries is an important step to share project results in accessible language for patients and non-expert audiences.

To facilitate their visibility and uptake, the EPF team has focused the last months on preparing the lay summaries for wide dissemination. First, EPF has begun working with professional translation services to translate 8 lay summaries into 6 languages of the Patient Panel – Maltese, Romanian, Hungarian, Italian, Polish, and Gaelic (Irish)/Catalan. Translating these documents into more languages (German, French, Spanish, and others)  helps to ensure that they will be available to wider multilingual audiences.

At the same time, EPF held a tendering process for design materials at the end of 2021 and has begun working with the selected designer on various tools. This collaboration will allow us to transform the lay summaries into attractive and easy to use documents and leaflets, which will support their uptake by lay-users including patients as well as the wider public. Additionally, we will also produce 4 short videos to promote the project and its main results. This work will be merged with our translations, to create visually attractive and multilingual documents which can be used by stakeholders outside of the immediate ecosystem of the project partners, and with the aim of reaching audiences such as various European patient organisations, national level organisations, individual patients and other public audiences.

Final Advocacy Event in Brussels, November 2022

EPF would be leading the Closing Advocacy Conference in November 2022 in Brussels, Belgium. This Advocacy Event will be a bouquet of stakeholders and perspectives. Over the summer, EPF and other COMPAR-EU partners will be working towards building the agenda of the event, identifying and inviting speakers from across Europe and with deep understanding and interest in self-management (interventions). Currently, the plan is to have a two-half days event with 60 to 80 participants onsite and virtual element.

What to expect in 2023 from the project?

As previously communicated, the official end of the Project is planned for December 31st 2022. However, this does not mean that the dissemination of achievements and outcomes of COMPAR-EU will cease. Two activities will be of particular importance for the sustainability and scalability of the project beyond this date.

Self-Management Europe Initiative – find out more about the initiative here – this partnership will be a crucial part when it comes to continue working on the topic of self-management. In a nutshell, It is an exploitation initiative of the COMPAR-EU project with the aim of developing the potential of people, professionals, organisations, systems, and communities for creating a society that strengthens empowerment and self-management in people with chronic diseases.

The Interactive COMPAR-EU Platform must be fully operational and functional and available to all interested parties and hopefully, 2023 will be its pivotal year. As a reminder, among many other materials – all lay summaries should be available to the public in 10 different languages.

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Estefania Cordero

Estefania is EPF’s Communications & Outreach Officer. Previously she has worked at the European Commission’s DG Research & Innovation in activities to promote social sciences integration and behavioural change in the Horizon research programmes. She has also worked as a Health Policy Researcher at Hanover Communications, a consultancy.

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Lyudmil Ninov

Lyudmil Ninov is EPF´s Senior Programme Officer. He joined EPF in April 2017. His focus is mainly on the PRO-STEP tender project, Summer Training for Young Patients Advocates 2017 & 2018, Horizon 2020 projects proposals/calls, COMPAR-EU and CHRODIS projects and providing support to other EPF projects and team members.

The COMPAR-EU platform launched

Evidence for existing self-management interventions (SMIs) is increasing exponentially, as is the need for strategies and tools to facilitate their implementation. COMPAR-EU consortium partners are delighted to announce the launch of an information technology platform to support decision making on SMIs for different end users with the four relevant chronic diseases: type 2 diabetes, obesity, COPD and heart failure.

This interactive COMPAR-EU platform hosts several products to support decision making on self-management interventions

Interactive Summary of Findings tables (iSoF)

The iSoF helps to guide developers and healthcare professionals in finding and understanding the main results regarding the effectiveness of SMIs for core outcomes sets (COS) that are considered relevant for stakeholders of the four chronic diseases.

Evidence to Decision frameworks (EtD) and recommendations

The purpose of this framework is to help policymakers and managers make decisions about SMIs targeted to the 4 chronic diseases when more than two options are available. EtD frameworks can inform on the pros and cons of each intervention, ensure the criteria that determines a decision are being considered, help to structure discussion and form the bases for decisions transparent to those affected by a policy decision. Ad hoc panels have constituted teams to formulate recommendations for each condition using the EtD frameworks.

Patient Decision Aids

These tools are designed to help reach a shared decision between the healthcare professional and patient regarding SMIs that are tailored to patient preferences regarding specific outcomes or intervention characteristics.

Results from network meta-analysis, cost-effectiveness and contextual factors

Specific results derived from the network meta-analysis, cost-effectiveness analysis, and interactive report of contextual factors influencing the implementation of SMIs have also been integrated into the platform.

Repositories of RCTs, tools and interventions

This section is especially helpful for researchers and clinicians. It presents a catalogue of interventions classified by a taxonomy, a catalogue of self-management tools (composed mainly by PROMs and PREMs) to evaluate the relevant outcomes (COS), and a catalogue of randomized control trials that have analyzed SMIs.

Further information

Link to the press release: https://self-management.eu/wp-content/uploads/2022/07/PressRelease_COMPAREU_platform.pdf

Link to the COMPAR-EU platform: https://platform.self-management.eu/

Preferences Regarding Self-Management Intervention Outcomes of Dutch Chronically Ill Patients With Limited Health Literacy

For many chronically ill patients self-management of their disease is difficult. This may be especially true for people with limited health literacy as they are faced with additional challenges in the day-to-day management of their disease. Research has shown that self-management support is most effective when tailored to the needs and preferences of patients. Therefore, this study explores the preferences regarding self-management outcomes of chronically ill patients with limited health literacy.