1️⃣ ANALYTICAL SUMMARY

Context and issues — measuring a 'health democracy' under tension

The barometer starts from an observation: patients are not just users, but hold expertise derived from experience, which can be mobilised at all levels of the system (micro, meso, macro). In a context of budgetary crisis and a decline in the role of civil society, the EPF seeks to objectify the involvement of patient organisations in the making of national health policies. The study covers Europe in a broad sense (beyond the EU) through 27 national coalitions in 23 countries, and structures the analysis around eight areas: institutional framework, formal mechanisms of participation, transparency, core activities, added value in the evaluation of health technologies (ETS/HTA), barriers and levers, impact, and strategic repositioning of organisations (p. 4-11).

Operational contributions — a comparative framework and actionable recommendations

The document provides an indicative ranking of countries, eight series of “ takeaways” with figures, more than 30 national case studies and recommendations by section. For field actors, it offers a precise vocabulary (involvement vs engagement, hard law vs soft law, patient expert vs patient organisation), transposable eligibility and transparency criteria, and documented examples of impact (access to treatments, patient rights, prevention campaigns). It equips both advocacy (demonstrating the added value) and the daily practice of representation (preparing a contribution, demanding feedback on its use).

2️⃣ KEY POINTS OF THE DOCUMENT

1️⃣ An incomplete institutional framework: about 39% of respondents report the absence of any framework for the involvement of patient organisations; ~30% anchor it in law, 19% in guidelines/strategies. Of the 14 countries with a framework, only 5 (Netherlands, France, Finland, Scotland, Romania) consider it " well implemented" (p. 12-15).

2️⃣ Only four countries have a legal definition of "patient organisation" (Germany, Netherlands, Bulgaria, Czech Republic), which undermines the legitimacy and clarity of representation elsewhere (p. 16-17).

3️⃣ Transparency is the "blind spot": 13 out of 23 countries report the absence of clear and transparent criteria for selecting the organisations involved. An over-reliance on individual "patient experts", often poorly defined, is reported as a risk (p. 28-31).

4️⃣ In the assessment of health technologies (HTA), 14 out of 23 associate patient organisations, but only 7 associate individual expert patients; participation is mostly ad hoc, dominated by written contributions. Only 3 countries grant a voting right in the appraisal committee (Czech Republic, France, Slovenia) (p. 41-46).

5️⃣ Funding and capacity building are the decisive levers: only about one in three countries offers public capacity building programmes; funding remains largely directed "by project" rather than in multi-year operational grants, which threatens the stability and independence of organisations (p. 47-53).

3️⃣ ACTION TRACKS FOR LOCAL ACTORS

1️⃣ Self-positioning of its structure or territory using the grid in eight areas (framework, mechanisms, transparency, activities, ETS, barriers/levers, impact, positioning) to identify where participation is structural and where it remains occasional (p. 4-11).

2️⃣ Demand public eligibility criteria that are applied consistently to sit on bodies (governance, representation, transparency of funding), relying on the list of criteria proposed in section 3 (p. 31-32).

3️⃣ Prepare a quality ETS/HTA contribution: aim for an early involvement (from the framing, not just the late consultation), request documents in plain language and require explicit feedback on the use made of the contribution (p. 46).

4️⃣ Document and quantify the added value of its structure (services provided, savings, impact on access), similar to the reports produced in Slovenia (ZOPS) and in the Czech Republic, to strengthen budget advocacy (p. 64-69).

5️⃣ Secure funding: advocate for multi-year operational grants rather than project funding, and for dedicated support for participation in committees (time, expertise) — an explicitly identified barrier (p. 47-53).

6️⃣ Invest in training: seek or co-construct capacity-building programmes (governance, advocacy, financial management, regulatory processes), including through partnerships with universities or other civil society actors when public offerings are lacking (p. 51-52).

4️⃣ ADDITIONAL REFERENCES

⚠️ References subsequent to 2024, complementary in substance, URLs verified at the time of writing (to be re-verified before external dissemination).

• France Assos Santé (Dec. 2025) — “All united for our health: 20 proposals to improve user participation in the healthcare system.” Directly operational extension on the French side. france-assos-sante.org

• France Assos Santé (Sept. 2025) — “Barometer of the rights of ill persons 2025.” Complement on the “demand” side (information, knowledge and application of rights), useful for cross-referencing the institutional angle of the EPF barometer. france-assos-sante.org

• Practices in Health - on the theme of patient participation - https://www.pratiquesensante.com/7-3-particpation-aux-soins-et-formation

5️⃣ FAQ (FREQUENTLY ASKED QUESTIONS)

1️⃣ What data does this barometer rely on? On an online questionnaire distributed from March to June 2025 to 27 national coalitions from 23 countries, completed by one expert per organisation, plus a literature review and case studies. The ranking is therefore an indicative snapshot, not a definitive evaluation of the systems (p. 5-6).

2️⃣ How to read the ranking of countries? Each country is ranked in the 8 sections; the total “points” corresponds to the sum of its ranks (the lowest total = best performance). Scotland (25), the Netherlands (28) and Cyprus (30) are at the top; Bulgaria, Serbia and Malta are at the bottom (p. 7).

3️⃣ Is a law needed to involve patient organisations? The EPF considers institutionalisation essential, but specifies that the absence of a legal basis does not prevent, in itself, a useful participation; it simply makes the involvement occasional rather than structural. A framework is only effective if it is applied and funded (p. 18).

4️⃣ What distinguishes a "patient organisation" from a " patient expert"? The document warns about the confusion between the two and the over-dependence on individual patient experts. It advocates for clear definitions and criteria for representativeness and governance (p. 30-31).

5️⃣ What is the role in health technology assessment (HTA)? Variable: 14 countries out of 23 involve organisations, but involvement often remains late and written. Good practices cited: permanent seat (Germany), voting rights (France, Slovenia), explicit feedback on the use of contributions (p. 41-46).

6️⃣ What are the main barriers? The lack of stable funding (operation vs project), the absence of capacity building (about one in three countries has access via the authorities), and the lack of recognition/transparency (p. 47-53).

7️⃣ How to demonstrate the added value of a patient organisation? Through reports quantifying the services provided and the savings generated, such as those from Slovenia (ZOPS) and Czech Republic, and through case studies of impact on access to care and rights (p. 64-69).

6️⃣ REWRITING IN EASY TO READ AND UNDERSTAND (FALC)

What is this document about?

• Patients are well acquainted with the health system. They have useful knowledge.

• This document looks at whether patient groups participate in health decisions.

• It studies 23 countries in Europe. It compares how it works in each country.

• A "patient group" (or "patient organisation") is an association that advocates for patients.

What the document found

• Many countries do not have clear rules for involving patients.

• More than one in three countries has no framework. These countries involve patients "on a case-by-case basis."

• Only 4 countries state in law what a patient group is.

• Often, it is not clear why a particular group is chosen to participate. It is not clear.

• Patient groups lack stable funding. They also lack training.

What helps patients to weigh in

• Having clear and written rules.

• Involving patients early, not at the end.

• Providing funding over several years, not just for one project.

• Training patient groups to be stronger.

7️⃣ CROSS-SECTIONAL ANALYSIS — VALUES OF HEALTH PRACTICES

• Literacy : the document recommends information and summaries in clear language for patients involved in the ETS, but does not provide a ready-made literacy tool.

• Empowerment : the central logic is the shift from "voice" to " impact"; patients are seen as co-producers, with an advocacy for real agency (co-decision, voting rights).

• Participation : heart of the subject; the document describes mechanisms of consultation and co-construction, while pointing out their often ad hoc nature.

• Community health: the collective dimension is valued (organisations representing groups, not individuals), in contrast to the over-dependence on individual experts.

• Ethics : biases are mainly addressed from the perspective of conflicts of interest and funding transparency; cultural/social biases are rarely treated as such.

• Human rights: the framework is anchored in the right to participation (Alma-Ata, WHO resolution 2024) and a logic of equity between countries and between groups.

• Intersectorality : recommendation to institutionalise involvement beyond health (social protection, employment, rights of persons with disabilities, environment, food).

• Partnership : formalised models cited (permanent seat on committee, predictable involvement frameworks), and a call for cross-border collaboration between coalitions.

• Fight against discrimination: addressed indirectly through the unequal representation of certain groups and the requirement for diversity of voices; non-judgment and diversity are not subject to specific treatment.

8️⃣ EVALUATION OF THE RELIABILITY OF THE RESOURCE

Scientific relevance

Source legitimate institutional (EPF, European federation). Transparent and documented methodology (phases, weighting, reconciliation, review by contributing experts) and academic references cited. Limits explicitly assumed by the EPF, to be retained in any reuse: declarative and partly subjective data (one respondent per organisation), risk of divergent interpretations of the questions, small sample size (n=23), and ranking presented as an indicative snapshot, not as a definitive assessment. Declared use of ChatGPT for assistance in analysis and proofreading, upon human supervision. These characteristics prohibit any use of the figures as representative statistics: these are declarative orders of magnitude.

Operational relevance

High for advocacy and representation: grid in eight directly transposable areas, reusable eligibility/transparency criteria, concrete recommendations by section, and more than 30 case studies available as arguments or models. More indirect operational utility for field intervention "care": the document mainly acts at the level of policies (macro) and organisation (meso), not at the level of the individual act.

9️⃣ STRATEGIC HASHTAGS

#healthcarepractices #HealthDemocracy #UserParticipation #PartnerPatients #PatientOrganisations #ETS #HealthAdvocacy #HealthPromotion

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