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/

COMPAR-EU Evidence to Decision frameworks (EtDs): a tool for stakeholders

One of these outputs are the Evidence to Decision (EtD) frameworks. Four COMPAR-EU panels used these frameworks to formulate recommendations about self-management interventions (SMIs) for patients living with Type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure. The project will make available these EtD frameworks as interactive tools to support healthcare professionals, patients, and policymakers, among others, to make informed decisions on the use and implementation of SMIs.

What are these frameworks all about?

EtD frameworks help panels use evidence in a structured and transparent way to make informed decisions in the context of clinical recommendations, coverage decisions, and health system or public health recommendations and decisions. The frameworks include key background information, criteria for making a decision, and a conclusion section.

The background section provides details of the question addressed, including the population, interventions, and main outcomes of interests, as well as the setting, and the perspective (individual or population perspective).

The criteria section includes all the important factors that should be considered for formulating the recommendation (e.g. desirable and undesirable effects, the certainty of evidence, how patients value outcomes, cost-effectiveness, or acceptability).

Illustration: Sarah Rosenbaum, Norwegian Institute of Public Health

The COMPAR-EU panels have made judgements about each criteria taking into consideration a synthesis of the best available research evidence, tabulated as Summary of Findings tables. Finally, taking into consideration all the judgements, they formulated 40 recommendations across conditions, and proposed implementation considerations and research priorities. Recommendations address both SMIs in general (versus usual care), several selected individual SMIs, defined according to their components (specific support techniques, type of providers, specific delivery methods, etc).

The panel judgments for each criterion and the recommendations were made during the more than 15 online meetings that have taken place, and online before meetings, using the Panel Voice extension from GRADEpro. Panel meetings included the presentation of the project, thorough discussions of the evidence from the systematic reviews conducted, and structured and transparent discussions, using the EtD frameworks.

How can stakeholders use the EtD frameworks?

The EtD frameworks are interactive tools to support decision-making on the use and implementation of SMIs, and as such, stakeholders, including clinicians, researchers, and policymakers, among others, can access these resources for the four conditions.

Clinicians will be able to review the frameworks in case they want to better understand the rationale of the recommendations, including the research evidence, additional considerations, and the judgments made by the panel. Furthermore, if relevant, they can use the decision aid module to inform and discuss with patients about their options (see previous blog on this topic). Researchers will be able to access previous research in a summarised format, and be aware of the gaps in current literature (detailed in the research priorities section) or the need of update of the research evidence. policymakers will also be able to review them and decide if they should adopt (use as described) or adapt a given recommendation to their setting.

Jessica

Jessica Beltran

Jessica holds a Medical Degree (Universidad Cayetano Heredia, Peru) and a Master’s degree in Epidemiological Research (Universidad Cayetano Heredia, Peru). Currently, she is a Researcher at the Iberoamerican Cochrane Centre. Her work focuses on conducting evidence synthesis to support informed decision-making and guideline development.

Going digital: a narrative overview of the effects, quality and utility of mobile apps in chronic disease self-management

Smartphone health applications (apps) are being increasingly used to assist patients in chronic disease
self-management. The effects of such apps on patient outcomes are uncertain, as are design features that maximise usability and efficacy, and the best methods for evaluating app quality and utility.

Headroom approach to device development: current and future directions

Headroom analysis as a method to estimate the potential for a cost-effective implementation of self-management interventions

The COMPAR-EU project aims to rank the most (cost-)effective interventions for self-management. To estimate the cost-effectiveness of self-management interventions (SMIs) health economic models were used to predict the lifetime health benefits and (healthcare) costs for a scenario assuming one-time implementation of a SMI in comparison with a scenario assuming care as usual.

One of the important components of a cost-effectiveness analysis is the cost of the intervention. However, in some cases these costs are not readily available. As an alternative to standard cost-effectiveness analysis a headroom analysis can then be performed. In a headroom analysis (1), a headroom is estimated indicating how much an intervention or treatment may maximally cost to be considered cost-effective given the health benefits associated to the intervention and a threshold for the cost associated to these health benefits. Health benefits are often expressed in quality-adjusted life-years (QALYs). A threshold for the cost per QALY reflects the maximum cost society is willing to pay to gain one additional QALY.

In the COMPAR-EU project data on the characteristics and health benefits of SMIs were obtained from published data. The cost of SMIs is determined by factors such as the type of healthcare provider involved, the time spend per patient and the mode of delivery. The majority of published studies on self-management did not provide enough detailed information on these factors to be able to estimate the cost of SMIs. Therefore, a headroom analysis was conducted to estimate what SMIs may maximally cost to be considered cost-effective given its health benefits and a certain threshold for cost-effectiveness. Headrooms were estimated for two different threshold values: €20,000 per QALY gained, as this is a figure that is often used in the context of preventive interventions, and €50,000 per QALY gained, as this value is more often used for curative interventions in for instance COPD and heart failure patients. Overall, headrooms for SMIs varied across diseases and countries and were estimated to range from €0 to €2,400 and from €200 to €8,000 at a threshold of €20,000 and €50,000, respectively.

A lower headroom for a particular SMI implies that the SMI needs to be delivered at lower cost in order to achieve cost-effectiveness. As such, headroom estimates are relevant for policymakers and health care providers as they give guidance to when (and when not) to consider SMIs a tool to gain health at reasonable costs, and in what disease areas and patient groups it might be more efficient to invest in SMIs.

Hoogendoorn-Lips_Martine

Martine Hoogendoorn

Martine Hoogendoorn is a Senior Researcher at iMTA with more than 15 years experience in modelling the disease COPD. She holds a Master´s degree in Human Nutrition from Wageningen University and a PhD in Health Economics from the Erasmus University Rotterdam. She has extensive experience in disease modelling using different types of models (e.g. cohort, patient-level, Markov, DES).

de_Groot_ Saskia

Saskia de Groot

Saskia is a Medior Researcher at iMTA. She holds a Master´s degree in Health Economics, Policy & Law from the Erasmus University Rotterdam, a Master´s degree in Clinical Epidemiology from the Netherlands Institute for Health Science of the Erasmus Medical Center and a PhD in Health Economics from the Erasmus University Rotterdam.

Reference

[1] Girling A, Lilford R, Cole A, Young T. Headroom approach to device development: current and future directions. Int J Technol Assess Health Care. 2015 Jan;31(5):331-8.

Qualitative interviews to facilitate a smooth transition from the evidence of self-management interventions to practice

During digitization in the healthcare system and the continuously advancing process toward patient-centred care, the responsibility of patients for their own health is becoming increasingly important. Particularly in the case of chronic diseases, it is important that patients are enabled to actively participate in the management of the disease [1]. This is where self-management interventions (SMIs) play a significant role. SMIs aim to equip patients and informal caregivers if appropriate to actively participate in the management of their disease [2].

SMIs have good evidence and are very well researched. We are developing the COMPAR-EU interactive platform with different types of decision-making tools that summarize this evidence about SMI in a structured and transparent way. The decision tools can support decision-making on SMIs and so integrating the evidence into practice for different end users such as patients, clinicians, policymakers or guideline developers.

Many well evidenced and exhaustively developed decision-making tools and interventions do not deliver their potential impact because their use requires changes in clinical workflows as well as organizational structure. In addition to this there is insufficient support for these changes [3]. This leads to the question how decision-making tools can facilitate and disseminate the use of the most effective SMIs into the real life? How can it be made visible at the right time and what incentives are there for healthcare professionals and managers to use decision-making tools and the other way around SMIs?

Interviews with managers and clinicians

These are the questions we want to explore with qualitative implementation interviews with managers and health care professionals at the organisational level in COMPAR-EU countries. We will use their insights to build and refine business plans for the various provider and health system context. This means that a manager or clinician working in any relevant provider can look at the business plan and identify any key actions they should take which would help themselves and their colleagues make use of the decision tools produced by COMPAR-EU.

Collecting information on different health systems represented in COMPAR-EU countries illustrates that Germany and Spain provide a good representation of health system feature, in particular due to the differences in organisational enablers in insurance-based system than purely public system. Therefore, we have conducted a total of 40x qualitative interviews with managers and clinicians in Spain and Germany. The participants were recruited from different settings (primary care practice, hospital or special care practice) so we can obtain the implementation factors of innovations from different perspectives. We developed a semi-structured interview guide with reference to the TICD framework and a realist review by Joseph-Williams et. al (2020).

Figure 1 The overall process of qualitative implementation study

Directed qualitative content analysis

Currently, the interviews need to be analysed. We will use directed qualitative content analysis (QCA). This approach allows combining the development of deductive as well as inductive codes, and so allowing the use of existing evidence. A guide for analysis will be provided, based on the work of Hsieh and Shannon [4], Hamilton [5], and Gale et al. [6]. A codebook will be developed by OptiMedis based on the TICD framework [7] (inductive) and interviews conducted (deductive).

Challenges of the cross-national research

As the translation of the interview guide in different languages is considered to be challenging task [8], we had several meetings to adjust and translate the interview guide to ensure the cultural meaning of the questions and the shared understanding between both teams, as the interviewers from different countries may have different views and experience.

Additionally, we agreed to conduct the interviews in the local language of the respective country to avoid any language difficulties for both the participants and the interviewers. After pretesting of the developed coding system, we will discuss and add possible additional themes if needed. Similar as in other studies [9] [10], each country team will analyse the data in the native language as long as possible and not translate all interview data into one language. This form of rapid qualitative analysis yields similar results compared to traditional qualitative analysis and is therefore a useful tool for this analysis [11].

Business plans with key actions for implementation

In summary, the interviews aim to identify drivers and barriers for the use of decision tools on the COMPAR-EU platform capturing the evidence of SMIs in practice. These results will serve to develop business plans for organisations who will actually be making use of the decision-making tools. These business plans will focus on how to implement evidence based decision aids about SMI at the organizational level into the healthcare system.

Nina Sofie Krah_Quadrat

Nina Sofie Krah

Nina has a background in Health Economics & Health Care Management as well as Ethics in Health Care and works at OptiMedis as a working student. With a keen interest in the use of evidence in the health care system, her master’s thesis explores the conditions under which self-management interventions can be meaningfully implemented into clinical workflow.

Porträt_Zietzsch_Paula

Paula Zietzsch

Paula has a background in Health Economics and works at OptiMedis in different national and EU projects with a particular interest in shared decision-making. As a Research & Innovation Manager, she focuses on implementing evi-dence-based interventions in routine clinical care.

References

[1] Aujoulat I, Marcolongo R, Bonadiman L, Deccache A. Reconsidering patient empowerment in chronic illness: a critique of models of self- efficacy and bodily control. Soc Sci Med. 2008;66(5):1228-1239. https://doi.org/10.1016/j.socscimed.2007.11.034.

[2] Tattersall RL. TThe expert patient: a new approach to chronic disease management for the twenty-first century. Clin Med (Lond). 2002;2(3):227-229. https://doi.org/10.7861/clinmedicine.2-3-227.

[3] Orrego C, Ballester M, Heymans M, et al; the COMPAR-EU Group. Talking the same language on patient empowerment: Development and content validation of a taxonomy of self-management interventions for chronic conditions. Health Expect. 2021;00:1–13. https://doi.org/10.1111/hex.13303.

[4] Hsieh H-F, Shannon SE. Three Approaches to Qualitative Content Analysis . Qual Health Res 2005;15:1277–88.

[5] Hamilton AB, Finley EP. Qualitative methods in implementation research: An introduction. Psychiatry Res 2019;280. https://doi.org/10.1016/j.psychres.2019.112516.

[6] Gale RC, Wu J, Erhardt T, Bounthavong M, Reardon CM, Damschroder LJ, et al. Comparison of rapid vs in-depth qualitative analytic methods from a process evaluation of academic detailing in the Veterans Health Administration. Implement Sci 2019;14:1–12. https://doi.org/10.1186/s13012-019-0853-y.

[7] Flottorp SA, Oxman AD, Krause J, Musila NR, Wensing M, Godycki-Cwirko M, et al. A checklist for identifying determinants of practice: A systematic review and synthesis of frameworks and taxonomies of factors that prevent or enable improvements in healthcare professional practice. Implement Sci 2013;8:1–11. https://doi.org/10.1186/1748-5908-8-35.

[8] McGreevy J, Orrevall Y, Belqaid K, Bernhardson BM. Reflections on the process of translation and cultural adaptation of an instrument to investigate taste and smell changes in adults with cancer. Scand J Caring Sci. 2014 Mar;28(1):204-11. DOI: 10.1111/scs.12026.

[9] Woolhead G, Tadd W, Boix-Ferrer JA, Krajcik S, Schmid-Pfahler B, Spjuth B, Stratton D, Dieppe P; Dignity, and Older Europeans (DOE) project. “Tu” or “Vous?” A European qualitative study of dignity and communication with older people in health and social care settings. Patient Educ Couns. 2006 Jun;61(3):363-71. doi: https://doi.org/10.1016/j.pec.2005.04.014. Epub 2005 Jun 20. PMID: 15970421.

[10] Knutsen, I., Foss, C., Todorova, E., Roukova, P., Kennedy, A., Portillo, M., . . . Rogers, A. (2015). Negotiating diet in networks: A cross-European study of the experiences of managing Type 2 diabetes. Qualitative Health Research. 1-12. https://doi.org/10.1177/1049732315610318.

[11] Nevedal, A.L., Reardon, C.M., Opra Widerquist, M.A. et al. Rapid versus traditional qualitative analysis using the Consolidated Framework for Implementation Research (CFIR). Implementation Sci. 2021; 16(67).

Invitation: COMPAR-EU workshop May 2022, digital

The COMPAR-EU project team invites you to join a workshop on Exploring market opportunities of self-management tools. It will take place on 19/05/22 – digital.

What do we want to explore with you?

  • How decision tools could be embedded in the value chain and assess commercial issues surrounding market exploitation, such as competition and procurement procedures?
  • How to market the decision tools to different stakeholder groups?
  • What are the opportunities for implementation and what are the barriers to the use of self-management decision tools?

Attending the workshop, you will get an opportunity to:

  • Learn about new innovations, self-management tools, and state-of-the-art research developed by the COMPAR-EU consortium
  • Network and exchange knowledge with other companies working in the same field
  • Be a part of the transformation of research results into the practice
  • Start a new cooperation to implement self-management tools in real life

Please register here: WORKSHOP 19/05/22

We look forward to seeing you!

For more information, please contact Paula Zietzsch via e-mail contact@self-management.eu

Your COMPAR-EU Team

Patient Heterogeneity in Health Economic Decision Models for Chronic Obstructive Pulmonary Disease: Are Current Models Suitable to Evaluate Personalized Medicine?