Co-research in cancer refers to a collaborative research model in which patients and other stakeholders actively participate in all phases of the research process. This approach moves beyond viewing individuals as subjects to engaging them as partners. The aim is to produce more relevant, impactful, and person-centred knowledge by sharing power and decision-making between researchers and those affected by or involved in cancer care.

Methodological Aspects

1 Establish a Collaborative Framework
  • Define the purpose and scope of the research.

  • Identify partners: typically researchers, community members, activists, or people with lived experience.

  • Set expectations: clarify roles, time commitment, ownership of data, and decision-making processes.

  • Build trust and mutual understanding.

2 Co-Define the Research Question
  • Co-researchers and academic/technical staff jointly decide on:

    • What to study

    • Why it matters

    • For whom the research is relevant

  • Use tools like brainstorming, World Café, or Delphi rounds to reach consensus.

3 Co-Design the Research Methodology
  • Choose methods that fit both the research question and skills/needs of the group (e.g., interviews, surveys, arts-based methods, Photovoice, focus groups).

  • Discuss:

    • Ethical considerations

    • Data collection and analysis strategies

    • Practical tools (recorders, consent forms, etc.)

4 Capacity Building & Training
  • Provide training tailored to participants’ roles:

    • Research ethics

    • Interviewing skills

    • Data management

    • Critical reflection

  • Create a safe, inclusive learning environment.

5 Data Collection by Co-Researchers
  • Co-researchers collect data from peers or community members.

  • Use peer-based interviewing, journaling, participatory workshops, etc.

  • Promote reflexivity: co-researchers are encouraged to reflect on their role and positionality.

6 Joint Data Analysis
  • Organize collective workshops to interpret the data.

  • Use visual aids (e.g., theme maps, quote walls) and participatory analysis techniques.

  • Ensure that all voices contribute to meaning-making.

7 Co-Writing and Dissemination
  • Decide together:

    • Who will write or present the findings

    • What formats are useful (papers, policy briefs, videos, exhibitions)

  • Credit all contributors appropriately.

8 Action and Advocacy
  • Translate findings into recommendations, campaigns, or policy change.

  • Co-research often includes implementing change, not just generating knowledge.

9 Evaluation and Reflection

Jointly assess:

  • Impact of the project on participants and the community

  • What worked and what didn’t

  • Lessons for future co-research

Do's and Don'ts

✔ Treat co-researchers as equal partners, not assistants.

✔ Provide fair compensation for time and labor.

✔ Create space for conflict resolution and negotiation.

✔ Acknowledge and mitigate power imbalances.

✔ Emphasize action, not just knowledge production.

❌ Don’t rush the process—relationship-building takes time.

❌ Don’t assume co-researchers understand research jargon.

❌ Don’t extract knowledge without reciprocating.

❌ Don’t limit contributions to “data collection”—include co-researchers in all phases.

❌ Don’t exclude marginalized voices due to “lack of experience.”

Benefits & Challenges & Enablers

+ Key Benefits

Empowers patients and caregivers, giving them agency and voice.

  • Improves study design, recruitment, and data quality.
  • Increases research relevance, legitimacy, and real-world applicability.
  • Builds trust and promotes translation of findings into policy and practice.
  • Encourages societal engagement and equity by including underrepresented groups
- Challenges
  • Tokenism
  • lack of training
  • time/resource constraints
  • legal uncertainties
  • representativeness gaps.
+ Enabler
  • Clear frameworks
  • institutional mandates
  • EU and national funding
  • patient training (e.g., EUPATI)
  • leadership buy-in.

Examples

UK
  • Pioneer in patient involvement
  • Strong infrastructure (NIHR)
  • Normalised co-research culture.
NL
  • Mandated patient involvement in trials
  • Robust networks and training
SE
  • Vision Zero Cancer
  • pentahelix model
  • financial support for participants
FR
  • Health democracy
  • trained patient experts
  • formal patient committees
DE
  • National initiatives
  • BMBF guidelines support emerging co-research
EU

Initiatives like EORTC, EUPATI, WECAN, and Horizon Europe boost co-research.

Resources

WHO AHPSR

EORTC Patient Involvement

European Cancer Organisation

Horizon Europe Mission on Cancer

EUPATI Toolbox

WECAN Academy

NIHR INVOLVE

BMBF Patient Involvement Principles

ECHoS Project