Participatory Methods with Focus on the Cancer Mission

Introduction to this toolbox

Participation means meaningfully involving people and communities in shaping the decisions, policies, services, and research that affect their lives.

Drawing on guidance from the WHO Handbook on Social Participation , participation can take many forms — from one-way information sharing to deep, collaborative processes such as co-creation.

Before launching a participatory activity, it is important to reflect on how the process is initiated and led. Is it primarily driven by institutions or experts (top-down), or by communities and affected individuals themselves (bottom-up)?

Each approach has its strengths, but the key is to ensure that the process is transparent, inclusive, and adapted to context. Considering this balance helps to avoid tokenism and ensures that participation leads to meaningful influence and better outcomes.

This toolbox offers information on a range of participatory methods that can be used across the cancer field in different sectors, tailored to different levels of engagement — from informing and consulting to involving, collaborating, and co-creating.

It is designed to support actors across the ECHoS pentahelix stakeholder groups— including policymakers, researchers, public administration, health and care providers, and industry.

Each method is presented with:

⇒A concrete use case in the cancer field

⇒Practical resources, especially those relevant to health and cancer

⇒Where available, real-world examples

⇒Lessons learned from the ECHoS project (when labeled “Tested in ECHoS”)

Explore the toolbox to discover participatory practices that can help make cancer policy, research, and services more inclusive, equitable, and effective.

From infromation to co-creation

Levels of Engagement

The toolbox brings together a wide range of methods that aim to strengthen participation in Europe’s Mission on Cancer. These methods are designed for use across the five stakeholder groups — or “pentahelix” sectors — targeted by the ECHoS project: policymakers, researchers, public administration, health and care providers, and industry.

Each method in the toolbox involves one or more levels of engagement with citizens and/or patients, depending on its purpose and how it is implemented. To help users understand the scope of each method, we tag them according to the level(s) of engagement they cover.

Our classification draws loosely on the IAP2 Spectrum of Public Participation, the WHO Handbook on Social Participation, and common terminology in the field of patient and public involvement. While rooted in these frameworks, our approach adapts the language to reflect the context of Mission Cancer — for instance, we use the term co-creation instead of “empowerment,” which is more frequently used in EU research and innovation settings.

The levels of engagement featured in the toolbox include:

• Information
  Stakeholders receive clear, accessible, and timely information. This level ensures transparency and builds awareness, but does not involve feedback or dialogue.
  Example methods: public campaigns, informational websites, factsheets.

• Consultation
  Stakeholders are asked to share their views, preferences, or experiences, often through surveys, interviews, or focus groups. Their input is considered but not necessarily acted upon.
  Example methods: focus groups, public consultations, patient surveys.

• Involvement
  Stakeholders — especially patients and citizens — are more actively engaged than in consultation. They contribute knowledge and perspectives throughout specific parts of the process (e.g., shaping research questions, developing materials), and their input has a more direct influence.
  This term is widely used in health research and policy (e.g., patient involvement in the UK NIHR or EUPATI frameworks), where it often refers to active collaboration without full decision-making power.
  Example methods: patient reviewers, co-authoring plain language summaries, advisory roles.

• Collaboration
  Stakeholders are involved in ongoing, two-way interactions and decision-making processes. Collaboration implies stronger partnerships, joint problem solving, and shared responsibility.
  Example methods: steering committees, multistakeholder working groups, consensus conferences.

• Co-creation
  Stakeholders are engaged from the start — not just in contributing to predefined processes, but in shaping the goals, priorities, and solutions together. Co-creation supports shared ownership and is often used in innovation or systems change efforts.
  Example methods: living labs, participatory action research, co-design workshops.

Some methods span multiple levels. For example, living labs often combine information, consultation, involvement, and co-creation in one integrated process. That’s why each method in the toolbox is tagged with one or more engagement levels to reflect its full participatory potential.

 

Citizen and Patients

Target Groups: Citizens and Patients

In the Mission on Cancer, participation encompasses both citizens and patients. 

• Citizens: This group includes the general public, encompassing individuals regardless of their health status, also including patients. Citizen engagement is pivotal in areas such as cancer prevention, early detection, screening, and raising awareness and making sure that communication and activities are accessible and inclusive to all. Activities often involve public health campaigns, educational initiatives, and community-based programs aimed at fostering healthy lifestyles and informed decision-making. Read more on citizen engagement in the EU missions here: EU Missions & citizen engagement activities – European Commission.

• Patients: Referring to individuals diagnosed with cancer, patient engagement is crucial throughout the treatment journey and beyond. Patients contribute valuable insights into clinical research, treatment protocols, and quality of life considerations and more. Their engagement and involvement ensures that healthcare services are patient-centered, addressing real-world needs and preferences. The WHO defines patient engagement as “…the process of building the capacity
  of patients, families, carers, as well as health care providers, to facilitate and support the active involvement of patients in their own care, in order to enhance safety, quality and people-centredness of health care service delivery.There are manydefinitions of patient engagement, but all share an underlying theme: the facilitation and strengthening of the role of those using services as co-producers of health, and health care policy and practice”  (WHO: 2016)

While patients are inherently citizens, distinguishing between these groups allows for tailored engagement strategies that address specific needs and contexts within the cancer care continuum.

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