Enhancing patient engagement in oncology research

Table Of Contents

Overview #

In recent years, the role of patients in biomedical research, including biobanking, has evolved from passive participants to active collaborators. This shift toward meaningful patient engagement brings significant benefits to the relevance, quality, and ethical grounding of research. But what does “patient engagement” really mean in practice? And how can biobanking professionals and researchers successfully apply it in their projects? 

These were the topics of our ELSI dialogue “Empowering Voices: Enhancing Patient Engagement in Oncology Research – Experiences, Challenges, and Pathways to Inclusion”, which is part of the canSERV project. Watch the recording below.

Understanding levels of engagement #

Patient engagement is not a single fixed concept—it is a spectrum of participation levels, each serving different purposes depending on the context. As Stefanie Houwaart describes in her article, patient involvement can be seen as progressing through several stages:

  1. Compliance: Patients participate by enrolling in studies and following procedures but do not influence decisions. This is often considered minimal or non-engagement. 
  2. Consultation: Patients are asked for feedback—e.g., via surveys or focus groups. Their views may inform decisions, but their influence depends on how seriously their input is taken. 
  3. Cooperation and Co-Learning: Patients actively collaborate with researchers, for example by helping design study materials or contributing to protocol development. 
  4. Co-Learning: Patients are equal partners, often sitting on advisory boards, helping set research agendas, and offering the collective insights of their communities. 

These levels are not hierarchical goals—not every project requires full co-leadership. Rather, engagement should be fit-for-purpose, reflecting the needs of the project and capacities of all involved. Importantly, different stakeholders within a single project may engage at different levels. 

Principles for meaningful engagement #

From practical experience, several key principles emerge:

  • Engagement is a process, not a checkbox. It should be planned, maintained, and continuously reflected upon. 
  • Attitude matters. Successful engagement depends on recognising patients as holders of valuable experiential knowledge—not just as subjects, but as experts in their own right. 
  • Mutual learning is essential. Patients need support to understand the research system. Researchers, in turn, must learn to appreciate the patient perspective—something rarely taught in scientific training. 
  • Relationships come first. Reaching out early to patient organisations—even before a concrete project exists—helps build trust and collaboration.  

Training and capacity building #

Both patients and researchers benefit from structured training. In some countries like Sweden, patient advocates complete formal education in healthcare systems and research. Similarly, scientists are encouraged to take part in training on patient participation, especially if their background is purely in lab-based or biomedical sciences. 

Interdisciplinary collaboration is crucial for understanding the social, emotional, and systemic dimensions of patient involvement. 

Practical steps for researchers and biobankers #

If you’re just starting out with patient engagement, consider these steps:

  1. Do your homework: Review literature and case studies on patient participation in your research area. Learn from others’ successes and challenges. 
  2. Contact patient organisations early: Build connections before submitting grant applications. This lays the groundwork for authentic collaboration. 
  3. Involve patients from the beginning: Include them in identifying research questions and designing protocols—not just reviewing documents later. 
  4. Ensure fair compensation: Participation requires time and effort. Budget for reimbursements and, if possible, create mechanisms to free participants from work commitments. 
  5. Document and share: Make your engagement process visible—through publications, grey literature, and communication tailored for lay audiences. 

Structural and cultural challenges #

Despite increasing institutional support, several barriers remain:

  • Funding structures are often not designed to support patient engagement, especially in proposal development. 
  • Diversity and accessibility are ongoing concerns. Engagement should not be limited to retired or highly educated individuals—it must include a broad representation of voices, including young people, working individuals, and marginalised groups. 
  • Digital engagement is increasingly relevant, particularly for younger and more tech-savvy patients. Online platforms and virtual communities are vital spaces for participation. 

Why it matters #

Engaging patients isn’t just a trend—it’s a path toward better, more relevant, and more democratic science. For biobanking, where trust, consent, and long-term public support are critical, patient engagement helps ensure that collections serve real needs and reflect public values. 

Ultimately, successful engagement means sharing power, recognising diverse forms of knowledge, and building long-term relationships. It’s a journey that demands effort from both researchers and patients, but one that leads to stronger, more ethical, and more impactful research. 

Legal and ethical international and EU sources  #

  • Charter of Fundamental Rights of the European Union. The Charter provides the fundamental rights framework for patient-centred research and healthcare (see art. 1, 3, 8, 21, 35)  
  • Clinical Trials Regulation (Regulation (EU) No 536/2014). The Regulation strengthens the protection of research participants while promoting transparency and patient-centred clinical research.   
  • General Data Protection Regulation (GDPR) – Regulation (EU) 2016/679. The GDPR governs the processing of personal data used in oncology research and establishes safeguards for scientific research involving sensitive health and genetic data. It supports participant rights, transparency, accountability, and appropriate governance of secondary data use. 
  • European Health Data Space (Regulation (EU) 2025/327). The EHDS facilitates both the primary and secondary use of electronic health data for healthcare, research, innovation and policymaking. It aims to empower patients through greater control over their health data while enabling responsible access to high-quality data for cancer research and precision oncology under robust governance safeguards.  
  • Horizon Europe (Regulation (EU) 2021/695). Horizon Europe promotes Responsible Research and Innovation (RRI), public engagement, co-creation, and citizen participation in research and innovation. Patient engagement is recognised as an important component of excellent research, particularly within health research and cancer missions. 
  • Declaration of Helsinki (World Medical Association). The Declaration establishes that the interests, rights, dignity, and well-being of research participants should take precedence over the interests of science and society.   
  • CIOMS International Ethical Guidelines for Health-related Research Involving Humans (2021). Several CIOMS Guidelines are directly relevant to patient engagement: 
    • meaningful informed consent;  
    • community and stakeholder engagement;  
    • participant-centred communication;  
    • equitable participant selection;  
    • dissemination of research findings;  
    • protection of vulnerable populations.  

BBMRI-ERIC resources  #

External resources  #

  • EU Mission on Cancer. The EU Cancer Mission explicitly promotes patient-centred research, citizen engagement, co-design of research priorities, survivorship, and quality of life as integral components of cancer research and innovation. 

Relevant literature  #

  • Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013 Feb;32(2):223-31. doi: 10.1377/hlthaff.2012.1133. PMID: 23381514. 

Oncology research  #

  • Cepeda E, Reguero M, Abón V, Puyol M. Enhancing patient engagement in cancer research: a focus on patient-centric approaches to scientific discovery. Mol Oncol. 2025 Jun;19(6):1549-1552. doi: 10.1002/1878-0261.70004. Epub 2025 Feb 21. PMID: 39981818; PMCID: PMC12161468 
  • Bombard Y, Baker GR, Orlando E, Fancott C, Bhatia P, Casalino S, Onate K, Denis JL, Pomey MP. Engaging patients to improve quality of care: a systematic review. Implement Sci. 2018 Jul 26;13(1):98. doi: 10.1186/s13012-018-0784-z. PMID: 30045735; PMCID: PMC6060529. 

EUPATI guidance  #

  • Hunter A, Facey K, Thomas V, Haerry D, Warner K, Klingmann I, May M and See W (2018) EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment. Front. Med. 5:231. doi: 10.3389/fmed.2018.00231 
  • Klingmann I, Heckenberg A, Warner K, Haerry D, Hunter A, May M and See W (2018) EUPATI and Patients in Medicines Research and Development: Guidance for Patient Involvement in Ethical Review of Clinical Trials. Front. Med. 5:251. doi: 10.3389/fmed.2018.00251 
  • Haerry D, Landgraf C, Warner K, Hunter A, Klingmann I, May M and See W (2018) EUPATI and Patients in Medicines Research and Development: Guidance for Patient Involvement in Regulatory Processes. Front. Med. 5:230. doi: 10.3389/fmed.2018.00230 

Shared decision-making and patient-centred cancer care  #

  • Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med. 2012 Mar 1;366(9):780-1. doi: 10.1056/NEJMp1109283. PMID: 22375967. 
  • Epstein RM, Street RL Jr. The values and value of patient-centered care. Ann Fam Med. 2011 Mar-Apr;9(2):100-3. doi: 10.1370/afm.1239. PMID: 21403134; PMCID: PMC3056855. 

Acknowledgements   #

The work done stems from research conducted in the context of the project canSERV - Providing Cutting-Edge Cancer Research Services Across Europe, which has received funding from the European Union’s Horizon 2020 research and innovation programme under  Grant agreement ID: 101058620. The project started on 1 September 2022 and ended on 31 August 2026, then extended until 28 February 2027.  

ELSI, ethics, participants, patient engagement
Updated on 15 July, 2026