Patient Advisory Boards are structured platforms where patients, caregivers, and sometimes healthcare professionals collaborate to provide insights and feedback. They serve as bridge between the healthcare system and the patient community, ensuring that the patient voice is heard and acted upon in cancer care and beyond.
Patient Advisory Boards
Key Goals
Providing Patient-Centered Insights
Sharing real-world experiences to inform research, treatment, and care strategies.
Advising on Research Design
Helping researchers prioritize patient-relevant outcomes and ensure study feasibility.
Evaluating Tools and Services
Reviewing new technologies, clinical pathways, or support services to align with patient needs
Advocacy and Awareness
Promoting patient perspectives in broader healthcare policies or public campaigns
Key Activities
Regular Meetings
Boards typically meet periodically, either in-person or virtually, to discuss specific topics or ongoing projects
Workshops and Brainstorming Sessions
Facilitated sessions to co-create solutions or develop recommendations.
Feedback Mechanisms
Providing structured feedback on materials, such as clinical trial protocols, patient information leaflets, or digital tools.
Consultation Roles
Participating in decision-making committees or research panels as representatives of the patient community.
Methodological Aspects
The following methodological aspects should be followed.
Recruitment
Patients are often recruited through advocacy groups, healthcare providers, or open calls for participation. Selection ensures diversity in demographics and experiences.
Training
Members may receive training on healthcare systems, research processes, or specific topics to effectively contribute to discussions.
Engagement
Discussions are facilitated in a safe and supportive environment to encourage honest and open sharing.
Tools like surveys or breakout groups may be used to structure feedback
Follow-up
Outputs from the board, such as recommendations or insights, are shared with stakeholders (e.g., researchers, policymakers) for integration into projects or strategies
Benefits of involving patient advisory boards
Improved Relevance
Research and services better address real patient needs.
Empowerment
Patients feel valued and empowered by contributing to meaningful change.
Collaboration
Strengthens partnerships between patients, researchers, and policymakers.
Transparency
Builds trust through open dialogue and shared decision-making.
Examples in Cancer
The following list is not exhaustive!
Research National Cancer Research Institute (UK)
The NCRI Consumer Forum involves patients in prioritizing research funding and shaping cancer studies.
Policy Institut National du Cancer (France)
Patients provide feedback on national cancer care policies and research priorities to ensure alignment with patient needs.
Research Deutsches Krebsforschungszentrum (Germany)
The Patient Advisory Board collaborates with researchers to improve the relevance and impact of cancer research projects.
Prevention, Health and care Dutch Cancer Society (Netherlands)
Patients actively co-design prevention campaigns and provide input on care innovations.
Link: https://www.kwf.nl/en/forresearchers/programme-research-implementation/patient-participation
Research Radboud umc (Netherlands)
A service is offered to support researchers by providing feedback and input from the patient perspective at every stage — from initial ideas to proposal development, interim results, and final reflection.
Link: https://www.radboudumc.nl/en/research/research-programs/extra/pab-wc
Health and care Robert Bosch Centrum für Tumorerkrankungen (RBCT) in Stuttgart, Germany:
Since the end of 2021, the RBCT has had a patient advisory board that enables people with cancer and their relatives to actively participate in their care and to serve as a voice for patients.
Link:
Research Deutsches Krebsforschungszentrum (DKFZ) in Heidelberg, Germany
In 2018, the DKFZ established the Patient Advisory Board for Cancer Research, which advises the foundation’s board of trustees from the patient perspective and integrates the patient view into the center’s research strategy.
Link: DKFZ
Research National Center for Tumor Diseases (NCT) in Germany
The NCT has firmly established a partnership between patients and researchers. The goal is to incorporate the patient perspective at all stages of cancer research.
Link:
Health and care Charité Comprehensive Cancer Center (CCCC) in Berlin, Germany:
At the CCCC, patient representatives collaborate within the patient advisory board to promote patient participation and improve the care of cancer patients.
Health and care omprehensive Cancer Center Ostbayern (CCCO) in Regensburg, Germany:
On June 1, 2021, the CCCO established a patient advisory board to better address the needs and interests of cancer patients and their families.
Link:
Health and care Ireland
“The Department of Health will establish a Cancer Patient Advisory Committee to provide input into the development of programmes for patients with cancer. Membership of this committee will reflect the diverse nature of patients living with the effects of cancer, and will ensure that the needs of patients living in more remote areas are represented.”
Cancer patient advisory committee: Link: https://www.gov.ie/en/organisation-information/1942d8-cancer-patient-advisory-committee/