On May 12th, PARADIGM organised 3 parallel workshops online, aimed to provide the opportunity for participants from the CEE countries to give feedback and shape the thinking about the patient engagement tools that PARADIGM is currently developing to support sustainable patient engagement across the board. This resulted in the recognition from the PARADIGM consortium that for the tools to have a global impact, the insights coming from regions where the patient engagement ecosystem might be less mature are very much needed.

These workshops were held in the framework of the “From Gaps to Bridges: The Future of Patient Engagement in Central and Eastern Europe” conference that has been postponed due to the recent COVID-19 outbreak, supported by the European Patients’ Forum, the European Federation of pharmaceutical industries and associations and the Association of Innovative Pharmaceutical Manufacturers in Hungary. 

The workshops focused on three topics. 

  • The development of the roadmap to making the patient engagement ecosystem sustainable;
  • The recommendations on the capacity and capabilities to make patient engagement a greater reality;
  • The development of the monitoring and evaluation framework to assess the value of patient engagement activities.

The consolidated findings will be presented during the Patient Engagement Open Forum 2020 and will be integrated in the current work of PARADIGM. 

Prior to the workshops, a survey was sent to the participants in order to gain some preliminary insights into the current situation of the patient engagement ecosystem in the CEE region. The survey collected information at the political, economical, societal and technological levels. This preliminary work provided a clear indication that, while the situation in the CEE countries shares certain commonalities,  it cannot be understood as homogeneous, indeed a wide variety of issues seem to prevail that are very much country-specific. Some of the topics that were shared as well as country-specific challenges were explored in greater detail in the context of each workshop. These early learnings are clearly worth investigating in more depth in future collaborations between all partners. 

The workshop on the sustainability of the patient engagement ecosystem aimed to stress-test the current roadmap developed. It aimed to gather clarity on which intermediate goals were most critical to the CEE region and to SMARTify some of these goals for improved relevance to the CEE perspective. Across the 3 breakout sessions, four common themes emerged.  There is often a disconnect between the interactions of patient organisations and national governments and health ministries. This can hinder the perceived value that patient organisations can bring, the inclusion of the patient voice in decision making, and aligning strategies and funding mechanisms that could permit sustainability. There is a need for education and capability increases within and across patient organisations, ranging from improving medical education, how to better plan and implement strategy, financial stability and independence, and skills of implementing change. Broader alignment of short and long term strategies across patient organisations is needed to help prioritise areas of value generation with limited resources. The funding received in CEE is not sufficiently dedicated or sustainable since it is usually aimed at shorter-term projects rather than strategic, long term change, with new cross-stakeholder mechanisms and approaches needed to make real progress. 

The outcomes of this workshop will help to refine the patient engagement landscape section of the roadmap, highlight some critical considerations of the CEE region and enrich the recommendations and actions to mitigate these – all of which contribute to making the sustainability roadmap more pan European. 

The sustainability of the patient engagement ecosystem is also strongly linked with the capacities and capabilities of all stakeholders to carry over patient engagement activities meaningfully.

This topic was also addressed in a workshop that aimed to stress-test the current capability framework, how that is relevant from the CEE perspective and to identify additional recommendations on the required capabilities for patient engagement relevant for the CEE region. We discussed existing challenges in the CEE region that affect patient engagement capabilities including lack of knowledge and resources (time, funding and human resources), political instability which might hamper the adoption and continuity of any framework and a paternalistic approach to patient engagement. During the workshop we explored whether the proposed capability framework and its components were relevant to participants and how to make it more relevant for the CEE region. The framework was found to be comprehensive and important but to be applicable it should be flexible, adaptable and affordable. It should take into account cultural differences that may affect how some patient engagement aspects are regarded (e.g. conflicts of interest, transparency), the different legal frameworks and healthcare systems and the limited resources. It was stressed the importance of capabilities around accessibility to allow meaningful participation according to the person’s needs acknowledging that patients do not need to be professionals to engage with other stakeholders. Stigma around the disease is still very prevalent in some countries and therefore ensuring confidentiality when engaging with patients should be ensured. Capabilities to reach out and interact with patient organisations and to ensure the involvement of vulnerable populations (e.g. refugees) were also highly ranked. Financial compensation of patient engagement was also discussed and the necessity of being able to apply a common framework based on fair market value that does not rely on individual negotiations. In addition, transfer of knowledge and capabilities should be considered (e.g. promoting networking, sharing experiences and involving patient organisations and patients in a more meaningful way). Having dedicated staff shows organisational commitment to patient engagement and was considered very helpful to maximize engagement opportunities. Finally, it was highlighted the impact that the COVID-19 crisis may increase political instability and impact the availability of resources in health care systems. Patient engagement may be particularly affected in this context. However, it can also bring opportunities for increased collaboration in which patient- and citizen-driven change may become more relevant.

The third workshop aimed to improve the meaningfulness of the monitoring and evaluation framework for the CEE region by enriching the co-developed framework with metrics that capture value from the CEE perspective. We recognized several metrics from our existing analysis, including the feeling of being valued and heard, the feeling of making a contribution, understanding of patients’ experiences and preferences by other stakeholders, and a change in quality of life as a result of involvement in patient engagement. Some new (impact) metrics are especially valuable for partners in the CEE region, are awareness of patient engagement (visible in media coverage and meetings with institution representatives), stakeholders’ consideration of the value of patient engagement, number of new members of a patient organisation and number of patients cited as authors/contributors in research articles. As an objective, ‘clear, transparent and right procedures to involve patient organisations’ received attention during the workshop. Furthermore, contextual factors like political climate, societal view and appreciation of stakeholders and general stance towards patient engagement are important. The emphasis is on trust and capacity. In comparison to western Europe, patient engagement is less often implemented as a practice. More efforts are needed, and metrics to show the value are essential to further the cause of sustainable and meaningful patient engagement.

The second part of the CEE Patient Engagement Conference will be organised later in the year in Budapest if the sanitary situation allows, and will aim to spark interest in improving patient engagement practices across the region and to specifically address this topic for the benefit of patients and healthcare systems. CEE countries share a similar socio-economic set up and the structure of their healthcare systems and processes are comparable as well. Bringing the topic to the region we hope to elevate the relationship between all stakeholders and help patient organizations to be involved in all decisions across the lifecycle of medicine from R&D to healthcare policies.

The IMI PARADIGM consortium wishes to thank all the participants for the presence online, their engagement and their insights to make the PARADIGM outputs better! A big thank you goes as well to Elisa Ferrer and Concha Mayo from EURORDIS, Ana Diaz from Alzheimer Europe, Zsofia Bakonyi from EPFIA, Paul Robinson from MSD, Staurt Faulkner from the University of Oxford, Tjerk Jan Schuitmaker from the Vrij Univeriseit of Amsterdam, Bryan Texeira from EATG, Gergely Jandrasits from AIPM and Mathieu Boudes from EPF. 

Resources:

  • Agenda of the workshop
  • Slidedeck presented during the plenary session
  • Slidedeck presented during the workshop ‘the development of the roadmap to making the patient engagement ecosystem sustainable’;
  • Slidedeck presented during the workshop ‘the recommendations on the capacity and capabilities to make patient engagement a greater reality’;
  • Slidedeck presented during the workshop ‘the development of the monitoring and evaluation framework to assess the value of patient engagement activities’.