COMPAR-EU Final Newsletter

Dear readers,

it is a pleasure for our consortium to publish this last COMPAR-EU newsletter. Our project
is coming to its completion at the end of this year.

We take this opportunity to thank you once again for your interest and contributions. We
also want to highlight that all our achievements have been possible only because of the
great collaborative efforts from all partners over the last five years. We have both enjoyed
and learned from our work and complementary expertise. Congratulations and thank you
very much to everyone!

In this issue, we cover the relevant activities carried out during the last semester. The
main focus was on dissemination efforts: the research conference which presented the
project’s results and opportunities for sustainability; the advocacy conference held with
patients and policymakers to create awareness about self-management; and
presentations about the platform on different occasions.

We hope the project results will reach our different audiences and offer new opportunities
to improve self-management.

We especially recommend that you read the article covering a spin-off that emerged
from COMPAR-EU: Self-management Europe (SME). SME will allow us to keep the
platform updated or generate new resources helpful for various target groups. We look
forward to continuing our contact with you through this initiative.

In this context, instead of saying goodbye, we’ll see you soon! We wish you a merry
Christmas and a great new year!

On behalf of the COMPAR-EU project,

Carola Orrego
Project coordinator

Read the full newsletter here.

Effectiveness of eHealth Self-management Interventions in Patients With Heart Failure: Systematic Review and Meta-analysis

Heart failure (HF) is a common clinical syndrome associated with substantial morbidity, a heavy economic burden, and high risk of readmission. eHealth self-management interventions may be an effective way to improve HF clinical outcomes. Objective: The aim of this study was to systematically review the evidence for the effectiveness of eHealth self-management in patients with HF.

Continuing support for self-management after the end of the project

This information is highly valuable for patients, professionals, guideline developers, researchers, and policymakers as well as for industries developing IT support systems, pharma and insurance companies. All this information has been reported in an interactive platform which includes decision aids for patients and providers, evidence to decision frameworks, summary of findings tables and recommendations per disease. Lay person summaries are included in the platform.

We are aware that our results can make an important contribution in bridging the gap between knowledge and practice, summarising what is currently available and developing further knowledge and support to the field.

Our mission: help stakeholder’s decision-making

To continue the COMPARE-EU efforts after the project termination in December, we launched Self-Management Europe. This is the not-for-profit European Research and Innovation Centre conceived of as a partnership of organisations working on patient empowerment and self-management. The project is a joint venture initiative led by the Netherlands Institute for Health Services Research (Nivel), OptiMedis, the Avedis Donabedian Research Institute (FAD and the European Patients’ Forum (EPF). It works in collaboration as an affiliate member of the other COMPAR-EU partners.

Its mission is to help stakeholder’s decision-making by providing, creating, and disseminating new and innovative knowledge for better self-management and patient empowerment with a special emphasis on chronic conditions. Its main objectives are:

  • Providing updated (scientific) knowledge on patient empowerment and self-management.
  • Promoting research and generating new knowledge on how to improve self-management with special emphasis on vulnerable people and chronic conditions.

We aim to build capacity for research, policy and interventions through workshops, webinars, seminars, and knowledge exchange and help to set strategic directions in European research and policy on self-management, empowerment and chronic disease and create opportunities for innovation and transfer of self-management research for the mHealth application.

Self-Management Europe Alerts

Our first initiative has been to produce Self-Management Europe Alerts providing practical recommendations on how to implement practices that enhance self-management and patient empowerment. So far, four have been published and are being translated to different EU languages to enhance their impact. We intend to create a network with other interested organisations to continue enhancing self-management and patient empowerment knowledge and implementation.

If you are interested, please contact us at contact@self-management.eu

Rosa Sunol, MD, PhD

Rosa Suñol

Rosa Suñol is President of the Board of Trustees at FAD. She holds the Donabedian Research Chair in Quality at the Faculty of Medicine and is also Deputy Editor at the International Journal for Quality in Health Care since 1991. Rosa Sunol has published more than 80 articles and books and has over 25 years of experience in health and social care research.

COMPAR-EU’s Final Advocacy Conference was a success!

This advocacy conference marked the culmination of  5 years of interdisciplinary work to identify, compare, and rank the most effective and cost-effective self-management interventions for adults in Europe living with high-priority chronic conditions. The conference took place on 15 & 16 November, 2022, in Brussels, Belgium.

It gathered approximately 70 stakeholders who exchanged experiences and expertise on self-management (SM) best practices, shared lessons learned from implementation of SM policies, and discussed how to best integrate and incorporate the project’s findings across various settings. Other topics, like the  Self-Management Europe Initiative, project lay-language materials, and self-management policy implementation practices were also feature in the programme.

Lyudmil Ninov  joined a session on the Self-Management Europe initiative and patient involvement, while Kaisa Immonen led an important session on health literacy and the social determinants of healthcare. Valentina Strammiello opened and closed the event, and guided discussions throughout the two half-days.

An important conclusion: Having self-management plans and procedures in place should be strongly encouraged for these to become an integral part of healthcare systems across Europe.

After a Day One Recap delivered by Valentina Strammiello, Dr. David Somekh (EHFF) moderated a discussion on the topic of ‘Self-Management in the Digital Era’. To begin with, Pablo Alonso (Senior Researcher at Sant Pau Biomedical Research Institute), guided the audience through the COMPAR-EU platform, which includes all the project results as well as decision aids for the conditions covered in the project.

As a member of the COMPAR-EU patient panel, Alessandra Veronese pointed out in her presentation the need for patient involvement in the clinical research of digital technologies. According to her, “patient involvement can help shed light on new trends, and the data generated by wearables can be used for estimating risk”.

For Dr. Richard Pratt (GP and Founder FORMYDOCTOR), self-management primarily means working ‘smarter’. While going digital can improve the process, safety should remain a central consideration. He noted that only about 20% of apps meet rigorous safety standards, which represents a risk. However, he continued by pointing out that the bigger risk is ‘doing nothing’. To conclude this morning session,

Dr. David Somekh invited the audience to reflect on opportunities for sustainable development:

Digital is an enabler – it is not the only solution. We all know the crisis of health systems can also be the opportunity for real change.
Ninov_Lyudmil

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.

Final Research Conference – Presenting key findings, the main product and having meaningful discussions

During the last 5 years, COMPAR-EU has identified, compared, and ranked the most effective and cost-effective self-management interventions (SMIs) for adults in Europe living with one of the four high-priority chronic conditions: type 2 diabetes, obesity, chronic obstructive pulmonary disease, and heart failure.

The main objective of the conference was to present the key findings of the project, and to release and promote the COMPAR-EU platform, the main product of this research project. This innovative platform includes: a repository of the studies assessed, and the tools used to measure the different outcomes on the four chronic conditions, the network-meta-analysis results, the contextual factors, and the cost-effectiveness analyses, as well as the decision-making tools. These tools designed for patients, clinicians and other stakeholders; and they include summary of finding tables, evidence to decision frameworks, and a decision aid.

Poster Session

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The conference started with a poster session. The scientific committee accepted a total of 20 posters representing institutions from Croatia, Germany, Greece, Spain, Switzerland, and The Netherlands, which were divided in three sections: Methods in self-management interventions (SMIs), Self-management interventions research involving stakeholders perspectives, and Evaluation and implementation of (components of) self-management interventions. The authors of posters attending the conference presented their works to the judges and the attendees.

The three winners are: Sofia Tsokani, Ana Isabel Gonzalez González and Melixa Medina Aedo!

Opening by Rosa Suñol and Asun Sanchez

After the poster presentations, we had the special welcome opening by Dr. Rosa Suñol, President of the Board of Trustees of the Avedis Donabedian Research Institute (FAD), and Asun Sanchez, General Director of health research training and accreditation, from the Health Department of the Balearic Government, who highlighted the importance and benefits of self-management, not just for increase the quality of life of patients, but also for healthcare professionals and for the entire healthcare system.

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Keynote
Using the Behaviour Change Wheel approach to increase physical activity and break up sitting for the benefit of cardiovascular disease risk and mental wellbeing

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Then, we had the honour of listening to a talk by Dr. Angel Chater, from the University College London and the University of Bedfordshire, introducing key aspects to achieve a change of behaviour increasing physical activity, and presenting the programme “The active Herts”, in which physical activity offers are tailored to the needs of local people. After this introductory speech, we concentrated on the conclusions of all partners that worked on this project.

On the first day, FAD, European Patient forum (EPF), Netherlands Institute for Health Services Research (NIVEL), University of Ioannina (UOI), Institute for Medical Technology Assessment (iMTA) and the Institut de recerca del Hospital de la Santa Creu i Sant Pau (IR-HSCSP) presented the main results from the different work packages, including the taxonomy, the core-outcome-sets, the promising self-management interventions and components based on the NMA and economic estimations for cost-effective interventions. The outputs produced by these work packages have been integrated into the platform to facilitate reaching different stakeholders. Several challenges have been presented related with the review, including large heterogeneity among the studies and lack of relevant data to perform some of the analysis. Some recommendations for further research were provided.

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COMPAR-EU platform: interactive workshop

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After this, the attendees participated in a workshop that showed the main features of three of the main sections of the platform: the Repository of documents, the Recommendation section, and the Decision Aids. Participants were able to explore the platform on their laptops or smartphones, and feedback was collected. This led us to an open discussion, guided by OptiMedis, who also presented the next steps about the implementation of the platform; concluding that a successful implementation would require changes at different levels, and the support of the recent initiative Self-management Europe could help to increase the platform value.

Keynote
Self-management in Europe: what have we learnt and what should we do next?

To finalise the conference, Dr Angela Coulter gave a keynote speech titled “Self-management in Europe: what have we learnt and what should we do next?”, in which she highlighted three main points:

  1. Self-management support should be guided by the evidence but personalised to the individual;
  2. Implementation involves leadership, infrastructure and demonstration; and
  3. Evaluation should take place alongside implementation, formative as well as summative.
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What’s next?

The consortium has concluded a long journey through these five years, with a large amount of work done. We have found where research gaps persist on self-management interventions’ research, and through the platform, we are now providing these findings to the scientific community, as well as the rest of the stakeholders, that can also make use of the interactive decision-making tools.

Through all this work we have also recognised that if our objective is patient involvement and empowerment, our job does not stop here; this is just the beginning. We must keep working to provide patients with the tools to achieve an appropriate self-management of their diseases, as in the words of a patient panellist, “Patients need to know how to recognise when something is going wrong and what to do, they will not have their good doctor or nurse a lifetime”.

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Melixa Medina-Aedo

Melixa Medina-Aedo is a nurse with a master’s degree in research methodology and works as a research technician at the IR-HSCSP. She has broad clinical experience working with patients and carers with chronic diseases and in the COMPAR-EU project she has led the management of the expert panels for the development of recommendations on SMIs for the four chronic conditions.

New COMPAR-EU leaflet on recommendations for the future, the platform and Self-Management Europe

The COMPAR-EU project team recently the second leaflet containing new updates on the work on the project and an outlook on the future. These are the main topics:

The innovative COMPAR-EU platform

The online platform presents the main results of the COMPAR-EU project funded by the European Union’s Horizon 2020 research and innovation program. The goal of this platform is to facilitate a smooth transition from the evidence generated to practice. It was launched in July 2022.

Check out the tools of the COMPAR-EU platform to support self-management.

Recommendations for the future

Check out our recommendations on SMI taxonomy, Core Outcome Sets, Effective SMIs, Cost-effective SMIs and Contextual factors.

SELF-MANAGEMENT EUROPE

The European Research and Innovation Centre on Patient Empowerment and Self-Management, called “Self-Management Europe”, is a not-for-profit partnership of organisations working on patient empowerment and self-management with a special focus on chronic diseases. We publish Alerts that aim to contribute to greater awareness and accessibility of self-management support for patients, especially for those living with a chronic condition The Alerts address healthcare professionals, managers and other stakeholders looking for practical recommendations to implement practices that enhance self-management and patient empowerment.

Check out four Issues of the Alert.

Link to the leaflet: https://self-management.eu/wp-content/uploads/2022/10/Leaflet_COMPAR-EU_2.pdf 
Link to the COMPAR-EU platform: https://platform.self-management.eu/
Link to Self-Management Europe: https://self-management.eu/selfmanagementeurope/

Workshop, hackathon, interviews: successful exchange with relevant stakeholders

In total we interviewed 38 clinicians and managers from hospital and community-based settings. The interviews focussed on how to successfully implement the decision tools at an organisational level.

The preliminary results show that there are important factors at different levels. There are different roles and responsibilities among team members that are important for the use of decision tools in practice. Enthusiasm among healthcare professionals to implement decision tools can be driven by the fact that the platform is evidence-based and that patients can benefit from support in the decision-making process. Financial incentives might be necessary to motivate organisations to implement decision tools. However, some participants believe that these incentives are unnecessary because patient health is what matters the most.

In order to test whether the domains identified in the initial interviews are applicable in other healthcare settings, we conducted a focus group with participants from other COMPAR-EU countries (Belgium, the Netherlands, Greece).

In addition, we conducted a workshop with other relevant stakeholders such as mHealth start-ups, pharma, researchers, management organisations, to explore how decision tools can be embedded in the value chain and how we can market them to different end users. We gathered different outputs related to the resources required, key activities, communication channels and costs. We were happy to see that participants were excited about the various features of the platform and also showed great interest in participating in our next event: the COMPAR-EU Hackathon in September. There we want to develop specific use-cases in detail to ensure the sustainability of the platform.

These, together with the outcomes of the workshop, interviews and focus group, will be included in the core business plan for the decision-making tools of the COMPAR-EU project.

Click here to sign up for the COMPAR-EU hackathon.

Paula Zietzsch

Paula Zietzsch is a Manager at the Research & Innovation department at OptiMedis. She is responsible for project organisation within OptiMedis and implementation of patient decision aids into the routine clinical settings. She holds a Master´s degree in Health Economics and Health Care Management from University of Hamburg

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.

Ninov_Lyudmil

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.