Right to Health Archives

Co-creation in health research: from participation to meaningful influence

A new scientific study proposes a framework for understanding who participates in research, when they participate, how they contribute — and how much influence they actually have

Co-creation is becoming increasingly important across public health, research, social innovation and the design of healthcare services. Patients, caregivers, citizens, healthcare professionals, researchers and communities are more frequently being invited to contribute to the development of interventions, services and solutions.

Yet an important question remains:

What does “participation” actually mean?

The presence of a patient or community representative in a meeting does not necessarily mean that they can influence the design, decisions or outcomes of a research project. Similarly, being asked to complete a survey is fundamentally different from helping to design an intervention, interpret findings or determine how results are shared.

A new open-access study, published on 19 August 2026 in the Journal of Public Health, addresses this challenge. Katrina Messiha, Mai J. M. Chinapaw, Johannes C. F. Ket, Renée I. Wink and Teatske M. Altenburg developed the Co-creation Roles Framework, an operational framework designed to systematically describe and classify the roles of different stakeholders in co-creation research.

Moving beyond “who was involved?”

One of the study’s most valuable contributions is its shift away from simply recording whether stakeholders participated towards examining the nature, depth and quality of that participation.

The framework captures eight key dimensions:

the research stage at which participation occurs,
the target group or stakeholder involved,
the aim of involvement,
how stakeholder knowledge is used,
the level of engagement and influence,
the form of co-creation,
the platform through which engagement takes place,
and the duration of engagement.

The relevant question therefore becomes much more precise than “Were patients or citizens involved?”

Instead, researchers can ask:

When were they involved? What were they asked to contribute? How was their knowledge used? And how much influence did they actually have over decisions?

What did the study find?

To demonstrate the practical application of the framework, the researchers conducted a systematic review following PRISMA guidance.

They analysed 39 scientific articles representing 19 youth-focused public health projects based on co-creation, Youth Participatory Action Research or Community-Based Participatory Research approaches.

The analysis revealed substantial variation in the ways stakeholders were engaged.

One particularly striking finding was that, under the strict definition used in the framework, none of the 19 projects reached the highest level of engagement — “empowerment”, where stakeholders hold genuine decision-making authority.

During the implementation stage, consultation and involvement were the most frequent levels of engagement, while consultation was also the most common approach during evaluation.

This finding matters.

It demonstrates that describing a project as “co-created” does not automatically mean that the people for whom an intervention is being developed have meaningful power to shape it.

Participation should not end when the research ends

Another important finding concerned dissemination and reporting.

Only 4 of the 19 projects included a reporting stage extending beyond conventional academic publication.

In some cases, young stakeholders were involved in presenting findings, communicating results within their communities, or developing dissemination materials and practical tools. Overall, however, stakeholder involvement in the final stages of the research process remained limited.

This is highly relevant to health research.

People who contribute their lived experience, time and knowledge to a study should not be considered merely a source of data. They can also play an important role in interpreting findings, shaping key messages and helping return knowledge to the communities from which it originated.

From patient participant to patient co-creator

This discussion has particular relevance for cancer research and cancer care.

Patients and caregivers hold a form of knowledge that clinical evidence alone cannot provide: the lived experience of illness and care.

They understand what treatment means in everyday life; where administrative, social or practical barriers interfere with care; whether a digital health service is genuinely understandable and accessible; which questions remain unanswered; and which outcomes actually matter to the people living with cancer.

Using this knowledge is not simply a matter of representation.

It is a matter of research quality.

For a patient-support organisation such as Kapa3, co-creation therefore means more than inviting patients into an existing process. It requires creating the conditions in which lived experience can become knowledge, knowledge can shape design, and design can ultimately lead to more relevant, accessible and person-centred services.

A framework for planning future research

The authors emphasise that the Co-creation Roles Framework may be valuable not only for describing completed research, but also for planning and evaluating future projects.

Research teams may use it prospectively to clarify stakeholder roles from the beginning, while funders, ethics committees and scientific journals could potentially use such structured approaches to assess how clearly and meaningfully stakeholder participation has been planned and reported.

At the same time, the framework should not yet be regarded as a definitive standard.

The authors explicitly call for external validation across diverse co-creation settings. They also recognise an important limitation: non-academic stakeholders were not directly involved in developing the framework itself, which may limit its sensitivity to some experiential and contextual understandings of stakeholder roles.

Recognising these limitations is itself an important part of advancing more rigorous participatory research.

The next challenge: not simply more participation, but more meaningful participation

Co-creation should not become another box to tick in a research proposal.

The more important challenge is to be able to demonstrate:

who had a voice, when that voice was heard, how it influenced decisions and what ultimately changed because of that contribution.

As healthcare moves towards more participatory, person-centred and digitally supported models of care, the shift from research about patients to research with patients, and ultimately towards research shaped together with patients, may become one of the defining requirements for research that is both scientifically robust and genuinely relevant to people’s lives.

Scientific source

Messiha K, Chinapaw MJM, Ket JCF, Wink RI, Altenburg TM. Development and application of a framework for classifying stakeholder roles in co-creation research: a Health CASCADE study. Journal of Public Health. Published 19 August 2026. DOI: 10.1007/s10389-026-02881-2.

Messiha_et_al-2026-Journal_of_Public_Health

Head and Neck Cancer: The Importance of Early Diagnosis and Prevention.

July 27 has been designated as World Head and Neck Cancer Day (WHNCD). The initiative was launched on July 27, 2014, during the 5th World Congress of the International Federation of Head and Neck Oncology Societies (IFHNOS) in New York, with the goal of raising awareness, education, and the
promotion of prevention. The declaration is supported by dozens of scientific communities worldwide, governments, and, most notably, the UICC (Union for International Cancer Control).

What is Head and Neck Cancer?
This type of cancer includes tumors located in the oral cavity, the lips, the pharynx, the larynx, the
salivary glands, the thyroid gland, the skin of the region, and the cervix.

In terms of prevalence, it is the fifth most common cancer worldwide. Seventy-five percent of cases are located in the mouth and pharynx, while the most common histological type is squamous cell carcinoma (HNSCC). For example, more specifically in Greece in 2012, 1,350 new cases were recorded, a figure that accounted for 3.3% of all new cancer diagnoses in the country.

Based on these percentages, 30% of cases occur in the tongue, 20% on the lip, 15% on the floor of the
mouth and in the larynx, and 10% in the pharynx.

Risk Factors

Understanding the factors that increase the risk is the first step towards prevention. Everyday habits, such as smoking and alcohol consumption, place a significant strain on the body. In particular, 70 per cent of those affected are long-term smokers, with current smokers facing a 300 per cent higher risk. When
smoking is combined with alcohol, the two have a negative synergistic effect, multiplying the likelihood of developing the disease. At the same time, in recent years there has been an increase in HPV-positive cancers, mainly of the pharynx, which often occur in younger people with no history of smoking or
alcohol consumption. Finally, it is worth noting that up to 25 per cent of cases are observed in patients who have never smoked and have no other known risk factors.

Suspicious lesions and symptoms

Delay in diagnosis is the most unfavourable prognostic factor. Conversely, 85–90 per cent of cases can be
cured if diagnosed at an early stage.

Suspected precancerous lesions

Particular care is required when identifying suspected precancerous lesions in the oral cavity. These
include leukoplakia, a white patch of unknown aetiology that does not flake off, in which, in 20–25 per
cent of cases, cancer or severe dysplasia is present. Even more dangerous is erythroplakia, where the rate
of co-occurrence with cancer or severe dysplasia reaches 90 per cent. At the same time, suspicious lesions
include punctate leukoplakia, as well as any chronic ulcer – that is, a sore that is not caused by any
obvious injury and remains unhealed for more than two weeks.

Symptoms requiring medical assessment

There are also certain suspicious symptoms that necessitate immediate assessment by a doctor. These include any unexplained swelling, lump or puffiness in the mouth or throat area, as well as persistent pain when chewing, swallowing or speaking, or pain that radiates to the ear. Furthermore, symptoms such as hoarseness, a change in the tone of the voice, and unexplained bleeding inside the mouth are signs that
should not be ignored.

Prevention and Screening
Screening is particularly important for people over the age of 45, smokers, people who drink alcohol, or
those with a history of HPV infection. Screening involves four simple steps:
1. Neck: Palpation of the lymph nodes and the thyroid gland.
2. Lips: External examination.
3. Mouth: Examination of the tongue, floor of the mouth, cheeks, gums and soft palate.
4. Pharynx: Examination of the tonsils, soft palate and base of the tongue.

The importance of early intervention

Despite advances in surgery, radiotherapy and chemotherapy, the 5-year survival rate remains at around 60 per cent. Furthermore, treatments for advanced-stage disease can affect patients’ quality of life, causing functional (difficulty speaking, chewing, swallowing and breathing), aesthetic or psychological problems.

New Joint Ministerial Decision on the 2026 Aerotherapy Allowance: A Detailed Guide for KAPA3 Beneficiaries

At the Cancer Patient Guidance Center—KAPA3, we remain committed to providing accurate and timely information to cancer patients and their families regarding the rights and social benefits to which they are entitled. With the aim of making your daily life easier and ensuring you have full access to beneficial legislative provisions, we present a comprehensive guide to the granting of the air therapy allowance, in accordance with the recent Joint Ministerial Decision (No. 89399 EX 2026) published in the Government Gazette, Issue B, No. 3295, dated June 11, 2026.

The air therapy allowance applies to the summer season of 2026.

The amount is set at 250.00 euros and will be paid as a lump sum to the beneficiaries’ bank accounts on July 10, 2026.

The amount is unseizable and fully exempt from any tax or withholding.

Who Are the Beneficiaries

The benefit is granted to disabled retirees of the State and the e-EFKA. Specifically, beneficiaries are those who fall into the following categories:

a) Pensioners referred to in subparagraphs (a) and (b) of paragraph 1 of Article 6 of Legislative Decree 4605/1966.

b) Pensioners under subparagraph (c) of the aforementioned paragraph 1 of Article 6 of Legislative Decree 4605/1966, who, according to

the opinion of the competent Health Committee for the years 2020 through 2026, have been deemed to be in need of this allowance and belong to the following categories of retirees:

Disabled officers under Law No. 2588/1921 and Law No. 875/1979 on military retirement.
Disabled officers under Law No. 362/1943.

iii. Disabled enlisted personnel under Article 1 of Legislative Decree 1044/1971, as amended by Article 1 of

Law 1043/1980.

Disabled members of the former Municipal Police who were subject to Legislative Decree 330/1947.

Disabled members of the Security Forces under Law 1579/1950 and those disabled members of the Coast Guard,

the Fire Department, and the Agricultural Police who are treated as equivalent to them.

Disabled members of the National Resistance under Provisional Act 1855/1951, Legislative Decree 412/1970, and Law 1543/1985.

vii. Persons with disabilities under Law 1370/1944 (who sustained their disabilities during peacetime while in service and as a result thereof, and

receive a disability pension).

viii. Persons with disabilities from the anti-dictatorship struggle under Law 1543/1985.

Disabled civilians under Law 812/1943.

Disabled civilians under Law 1863/1989.

c) Civilian retirees who sustained disabilities as a result of their service (Decision of the Ministry of Labor and Social Security No.

754.6/117/3912/March 24, 1969) and

d) OSE retirees who left the service and are receiving a pension due to tuberculosis.

3. Who Is Exempt from Payment

According to the Government Gazette, the following categories are not eligible for the air therapy allowance:

Recipients of other benefits: Those who have received or are set to receive a corresponding air therapy allowance from any other source (such as public entities, private entities, public benefit organizations, etc.).

Spa Therapy Beneficiaries: Those who have been deemed eligible for spa therapy for the year 2026 by the Directorate for Reserve Combatants, Veterans, War Victims, and War Disabled (DEPATHA).

New Pensioners: Citizens whose pension is payable after September 30, 2026, or whose order for registration in the Pensioner Registers is issued after October 31, 2026.

What to Do in Case of Non-Payment

If you are eligible but the benefit does not appear in your account by the scheduled date of July 10, 2026, the law entitles you to file a retroactive claim.

You may submit a request by December 31, 2026, at the latest, to the following agencies (depending on your category):

To Section E of the Income Policy Directorate of the General Accounting Office (p. 2) .

To the General Directorate of Public Sector Pensions of e-EFKA (p. 2).

You can contact the Kapa3 team

13 Kostis Palamas Street, 3rd floor (Hours: 9:00 a.m. – 5:00 p.m.).

Contact Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr

EOPYY: New reimbursement framework for respiratory devices – What changes for patients

The reimbursement of respiratory devices under EOPYY has been updated through a new decision published in the Government Gazette (FEK) on April 27, 2026.

On April 27, 2026, a new EOPYY decision was published in the Government Gazette, establishing revised reimbursement prices for respiratory devices such as CPAP, Auto CPAP, and BiPAP machines.

These are medical devices primarily used by patients with respiratory disorders, including sleep apnoea, and they represent a fundamental part of daily treatment and quality of life.

EOPYY reimbursement for respiratory devices: what changes

With this regulation:

specific reimbursement prices are defined for each category of respiratory device
the prices apply to all products included in the Reimbursed Medical Devices Register
previous decisions for the same categories are replaced

Prices are unified per device category, regardless of manufacturer or commercial model.

What this means for patients

The new EOPYY reimbursement framework for respiratory devices provides a clearer structure for people living with respiratory conditions who depend on these devices in their daily lives:

it clarifies what is covered by EOPYY
it strengthens transparency regarding equipment costs
it ensures access to essential therapeutic tools that are not a choice, but a necessity

In some cases, a patient co-payment may apply when the device price exceeds the reimbursement amount.

Temporary nature of the regulation

The decision is considered temporary, as it is part of a transitional framework until the completion of the negotiation process for final pricing.

Nevertheless, it is fully applicable from the moment of its publication in the Government Gazette and constitutes the current reimbursement framework.

A more human perspective

Behind technical terms, codes, and regulatory tables, there are people who rely on these devices to breathe better, sleep better, and maintain a more stable daily life.

A clear reimbursement framework is not merely an administrative measure. It helps reduce uncertainty in situations that are already difficult to manage.

Source

The full text of the decision, along with the detailed list of reimbursed respiratory devices and corresponding prices, is available (in Greek) in the Government Gazette (FEK) of April 27, 2026.

Text/adaptation: Ifiyenia Anastasiou for Kapa3

Digital Access to Test Results: An Important Right for Patients

Digital access to medical test results has become an important right for patients in Greece, following new regulations that strengthen the use of the Digital Repository of Diagnostic Laboratory Results. According to the relevant decision published in the Government Gazette (March 2026), public and private healthcare units collaborating with EOPYY are required to record diagnostic test results in digital form within a specified timeframe.

This change is not just a technical procedure or an administrative obligation for healthcare providers. In practice, it represents a meaningful enhancement of patients’ rights, ensuring that every citizen can have immediate and organized access to their medical data.

Digital access to test results now reduces the need for physical documents, printed copies, or trips to diagnostic centers. Instead, results are stored in a unified digital environment connected to the Individual Electronic Health Record. This allows patients to have their test history consolidated, reducing the risk of losing important information.

For people living with cancer, this development is especially significant. Disease monitoring often involves repeated tests, visits to different doctors, and continuous evaluation of results. Immediate access to all data facilitates collaboration among healthcare professionals and contributes to more coordinated and effective care.

Moreover, the obligation to record results is linked to reimbursement procedures through EOPYY, enhancing transparency in the healthcare system. This ensures that only tests that have actually been performed are reimbursed, limiting abuse and strengthening the reliability of services.

It is also worth noting that data management is carried out under the current personal data protection framework, safeguarding patients’ privacy and information security.

Transitioning to a more digital healthcare system is not just a technological advancement. It is a step toward a more human, transparent, and accessible system of care, where the patient has an active role and meaningful control over their own data.

Ultimately, strengthening digital access to test results represents an important step forward in empowering patients and improving the quality of healthcare provided.

Source: Government Gazette, FEK B’ 1503/17.03.2026

Text/adaptation: Ifiyenia Anastasiou for Kapa3

New Collaboration between Cancer Guidance Center – Kapa3 and the Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS)

Cancer Guidance Center – Kapa3 announces its new collaboration with the Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS), strengthening synergies between organizations active in the field of health and patient support.

This collaboration aims to develop joint initiatives that will contribute to raising awareness, promoting public information, and providing meaningful support to people living with chronic conditions, with particular focus on cancer patients and persons living with Multiple Sclerosis. Through the exchange of knowledge, experience and good practices, the two organizations seek to strengthen actions that promote equal access to information, healthcare services and social inclusion for patients.

Cancer Guidance Center – Kapa3 is dedicated to supporting people living with cancer and their caregivers by providing reliable information, practical guidance and access to benefits and services. At the same time, the organization develops initiatives that enhance patients’ awareness of their rights and promote their psychosocial empowerment. Through initiatives such as Mobile Units, digital tools and educational programmes, Kapa3 promotes a patient-centred approach to cancer care, encouraging patients to actively participate in decisions concerning their health and quality of life, while fostering collaborations with organizations working in the fields of health and social support.

The Hellenic Federation of Persons with Multiple Sclerosis (HFoPwMS) is a secondary non-profit organization founded in 2008 with the aim of uniting and supporting primary associations of persons with Multiple Sclerosis across Greece, while also raising awareness about the disease among the wider public. The Federation currently brings together nine primary patient associations from across the country. HFoPwMS implements awareness and advocacy initiatives related to Multiple Sclerosis and works to ensure the equal participation of people with MS in the educational, professional, athletic and cultural life of the country. It is a member of the National Confederation of Disabled People (ESAmeA) and the European Multiple Sclerosis Platform (EMSP).

Within the framework of this collaboration, the two organizations plan to develop joint initiatives such as the organization of conferences, workshops and awareness events, the implementation of information and public awareness campaigns, participation in national and European programmes, as well as the development of joint research initiatives on issues related to patients’ quality of life. The partnership will also contribute to strengthening interdisciplinary cooperation and knowledge exchange among organizations active in the health sector.

This new collaboration reflects the shared vision of the two organizations to strengthen the voice of patients and promote a society that respects, supports and empowers people living with chronic conditions.

10 December — The Right to Health, Dignity and Equality

On 10 December 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights — a landmark document of 30 articles affirming, for the first time, that every person is entitled to equal, inalienable and fundamental rights: dignity, freedom, equality, security, and justice.

The Declaration marked a turning point in history. In the aftermath of World War II, states committed to protecting the human rights of all people — not only civil and political rights, but also social rights such as the right to health.

The Right to Health — Why It Matters for People Living with Cancer

The right to health is enshrined in Article 25 of the Universal Declaration and forms a cornerstone of human dignity.
According to the World Health Organization (WHO), it includes:

access to quality health services
a safe and supportive environment
clear, accessible health information
equal treatment without discrimination

For people living with cancer, this right translates into timely diagnosis, dignified care, psychosocial support, and information that is understandable and tailored to their real needs.

Cancer Statistics: The Global Picture and Greece

According to the latest estimates from the International Agency for Research on Cancer (IARC/WHO):

In 2022, there were approximately 20 million new cancer diagnoses worldwide.
Cancer-related deaths reached 9.7 million.
IARC projects that by 2050, global cancer cases could increase by up to 77%, unless prevention, equitable access and high-quality care are strengthened.

Cancer in Greece

Recent data for Greece indicate:

An estimated 63,176 new cancer cases in 2022.
An age-standardised incidence rate of 529 new diagnoses per 100,000 people, slightly below the EU-27 average.
A mortality rate of 239 deaths per 100,000 people (2021), slightly above the European average.
The most common cancer types in Greece include breast, prostate, colorectal, lung and thyroid cancer.
Inequalities in access to early detection and modern treatments remain a significant concern.

Why These Numbers Matter

Cancer does not affect “a few.” It is widespread — with thousands of new diagnoses every year. But outcomes are not equal for everyone. Many patients and caregivers face disparities in access to early diagnosis, quality care, reliable information, and continuous support.

In Greece, thousands of people confront daily barriers: delays, regional inequalities, lack of supportive services, overly complex medical information, or gaps in the continuity of care.

These realities make the right to health — especially in cancer care — a critical human rights issue.

Our Commitment at Kapa3

At Kapa3, we work to reduce health inequalities and ensure that every person living with cancer can access what they are entitled to. Through:

Accessible and clear translations of medical information
Psychosocial support for patients and caregivers
Participation in EU projects promoting equitable health care
Public awareness and prevention campaigns
Collaboration with scientific bodies and health authorities
Actions supporting health equity for vulnerable groups
The Kapa3 App as a digital tool for patient support

Across all our initiatives, we promote equality, empowerment and respect for human dignity in everyday cancer care.

No One Should Be Left Behind

Human Rights Day is not merely an anniversary. It is a reminder that health is not a privilege — it is a right.
And this right must be protected in practice, through policies, structures and services that respond to people’s real needs.

We stand beside every patient and every caregiver. We continue to work for a health-care system that supports and respects everyone, without exception.

Text/Adaptation: Ifiyenia Anastasiou for Kapa3