Horizon Europe must invest more in health to support high-quality, accessible and equitable health systems

The European Patients’ Forum (EPF) welcomes the European Commission’s proposal for the 9th Framework Programme for Research and Innovation, “Horizon Europe”. We are however concerned that the budget allocated to health is €7.7 billion, a small increase of only 300 million from the €7.4 billion of Horizon 2020. This is in our view not enough, given the formidable, global health challenges Europe is facing.[1]

The research framework programme is an important complement to the European Social Fund+, within which health policy is located in the European Union’s multiannual financial framework. EPF believes the budget allocations for health under the ESF+ and Horizon Europe need to be significantly increased, given the unprecedented common challenges that none of the European countries can successfully tackle alone and that require European solutions where research and changing practice go hand in hand. European citizens have expressed their legitimate expectations for the EU to do more for their health.[2],[3]

A further opportunity to support vital health research lies in the so-called “missions”, which are not specified in the proposal but meant to be defined in a strategic planning process. It is however unclear where the funding for these missions will come from, and how these priorities will be decided. EPF calls for extensive consultation with civil society, including patient organisations, regarding the development of Missions, to ensure they have full support and active engagement

Research should be driven by patients’ priorities

One of the EU’s fundamental goals is to promote the health and well-being of its citizens. Chronic diseases account for up to 80% of healthcare costs – a figure set to increase with the ageing population – whilst many chronic diseases are not linked to ageing and affect children, young people, workers and their families. Almost 50 million people live with multiple chronic conditions, with specific needs and challenges that healthcare systems are still not well equipped to meet.[4] 

EPF believes that the priorities of Horizon Europe work programmes should be driven primarily by the needs of patients and society. Within the proposal, health is a topic (“cluster”) under Pillar II, Global Challenges and Industrial Competitiveness. The Commission states that this merged approach will help create synergies and partnerships among stakeholders for more impactful innovation. We agree that innovative solutions often require collaboration between multiple stakeholders, but stress that there must be clear priority-setting criteria based on potential impact on unmet health needs, and that any entanglements of these priorities with other interests must be avoided. Innovative products and services developed with EU funding must be, at the end of the day, accessible and affordable to those who can benefit from them, be it individual patients or health systems.

We are pleased that the Health cluster mentions “supporting and enabling patients' participation and self-management” as a priority. We stress, however, that in order to embed patient-centred care in practice, solutions must be based a holistic approach. The 2014 European study on patient empowerment, EMPATHiE, found that most interventions and research projects to date have targeted self-management, with far less attention paid to shared decision-making – an equally important facilitator of patient participation.[5] 

EPF calls for a wide definition of innovation, including people-focused, social, organisational and systems innovation that is often low-tech. Research into design of health and social care and how care is delivered, can add significant value in providing evidence for targeting resources efficiently, thus contributing to the sustainability of health systems. Innovation should be valued for its potential to improve the quality of care and of life, over and above mere potential for putting a product on the market.

Furthermore, to truly address societal challenges and deliver on “smart, sustainable and inclusive growth”, we believe it is important to prioritise solutions for health inequalities, including social determinants of health, but also increasing equitable access to high-quality healthcare for all, in line with what we still believe to be fundamental shared values of European health systems.[6]

Walk the talk on meaningful patient involvement

The above can only be achieved if patients are meaningfully involved throughout the innovation cycle, from the “idea” stage to implementation and evaluation. Patients’ unique expertise and experiential knowledge bridges researchers’ scientific expertise with the real world, ensuring that results have social relevance. Patient involvement in research also ensures that results are disseminated and taken up more effectively and contributes to greater trust in and awareness of the benefits scientific research in society. 

The Horizon Europe proposal emphasises the importance of civil society participation in “co-designing and co-creating responsible research and innovation agendas and contents, promoting science education, making scientific knowledge publicly accessible, and facilitating participation by citizens and civil society organisations in its activities.” This is welcomed. But to ensure patient organisations are in fact able to participate in a meaningful way, they need support: not only financial but institutional and organisational support and capacity-building.

EPF calls for meaningful[7] involvement of end-users, including patients and patient organisations, to be embedded throughout the strategic planning process. In addition, we call for clear criteria for meaningful patient involvement in calls to be developed together with patient organisations, to avoid researchers treating ‘patient involvement’ as a tick-box exercise as they still too often do, and to reward those projects that practice genuine co-creation and co-production.

[2] April 2017 Eurobarometer of the European Parliament: http://www.europarl.europa.eu/external/html/eurobarometer-052017/default_en.htm

[4] Reflection paper on the Social Dimension in Europe (2017)

[5] Tender study: Empowering patients in the management of chronic diseases (EMPATHiE) , 2014. Final summary report available at https://ec.europa.eu/health/sites/health/files/patient_safety/docs/empathie_frep_en.pdf

[6] Council Conclusions on Common values and principles in European Union Health Systems (2006/C 146/01).

[7] Involvement that recognises and values patients’ expertise as it does other kinds of expertise, that is systematic, structured, non-tokenistic and appropriately resourced. See Value+, 2009: http://www.eu-patient.eu/whatwedo/Projects/completed-projects/ValuePlus/