Consultation is a participatory method used to engage the public in discussions about healthcare, research, and policy-making. This approach involves gathering input from citizens—often including patients, caregivers, and community members—on critical issues that affect their lives and communities. It emphasizes inclusivity, transparency, and collaboration, ensuring that diverse perspectives shape decisions and initiatives. It helps ensure that the voices of patients, caregivers, and the broader public are considered in shaping healthcare priorities, resource allocation, and ethical dilemmas.
Consultation
A citizens’ jury (or public jury) is a more deliberative method where a small group of citizens—usually representative of the general population—are selected to hear evidence from experts and discuss complex healthcare issues. Over several days, they engage in facilitated discussions before reaching conclusions or recommendations. In cancer policy, citizens’ juries have been used to address ethical issues such as access to expensive cancer treatments, the balance between early detection programs and treatment investments, and priorities in palliative care.
Key characteristics
A public consultation is a structured process that engages individuals and stakeholder groups to provide feedback on healthcare policies, treatment guidelines, and service delivery. It can take various forms, including surveys, town hall meetings, focus groups, and online forums. In cancer care, public consultations are often used to assess public priorities for funding research, screening programs, and patient support services.
Inclusivity
Everyone affected should have the opportunity to contribute
Transparency
The process and its outcomes must be open and accountable
Responsiveness
Show that the input had real influence
Respect
Value every contribution, especially from marginalized groups
Methodological Aspects
Planning phase
- Define Objectives: What exactly is being consulted on? (e.g., New National Cancer Strategy, new screening program, palliative care guidelines, …)
- Define Scope: Transparent scope: what is up for discussion and what is not.
- Identify Stakeholders: Include patients, survivors, caregivers, healthcare workers, NGOs, researchers, insurers, and the broader public.
- Regulatory Framework: Follow any legal or procedural requirements (some countries mandate public consultation for health reforms).
- Format Selection:
- Written consultation: Online forms, email submissions, public documents for feedback.
- Public hearings: Open meetings, town halls. These sessions are moderated to encourage open and respectful dialogue.
- Workshops/focus groups / targeted interviews: Targeted sessions with patient advocates, oncologists, researchers.
- Surveys or polls: To capture broader public opinion quickly.
Design of consultation:
- Accessibility: Materials must be understandable (plain language), translated if needed, and accessible to people with disabilities. Translations available in multiple languages for diverse audiences. Use of visual aids and storytelling (especially impactful in cancer discussions).
- Publish Consultation Documents: Share background information, draft plans, questions for public input.
- Communication Channels: Websites, social media, newsletters, newspapers — make sure stakeholders know the consultation is happening.
- Timeframe: Allow a sufficient period for responses (typically 6–12 weeks).
- Design topics and questions to ensure a patient-Centered Approach: Focus on patient experiences, needs, and preferences across the cancer care continuum (prevention, screening, diagnosis, treatment, survivorship, palliative care). Aims to capture real-world barriers to accessing cancer care or participating in clinical trials.
Engagement and Collection of feedback
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- Collect Responses: Gather written submissions, meeting notes, survey data.
- Stakeholder Support: Offer helplines, webinars, or FAQs to help people understand and participate.
- Monitor Participation: Ensure diverse voices are heard (avoid overrepresentation by a single group; A broad group of stakeholders should be engaged, including non-experts, to provide diverse perspectives (Includes patients, survivors, families, patient advocacy groups, healthcare providers, researchers, industry, and general citizens). Special attention is given to ensuring underrepresented populations are heard.
Examples in Cancer
Please find below a non-exhaustive list of examples of consultations for cancer topics
ACT EU EU Multistakeholder Platform
The “Accelerating Clinical Trials in the EU” (ACT EU) initiative aims to further strengthen the European Union as a competitive center for innovative clinical research. It is jointly led by the European Commission, the European Medicines Agency (EMA), and the Heads of Medicines Agencies (HMA).
ACT EU seeks to transform the initiation, design, and conduct of clinical trials to support the development of high-quality, safe, and effective medicines and to better integrate clinical research into the European healthcare system.
On 3 February 2023, ACT EU launched a public consultation on establishing a Multi-Stakeholder Platform designed to improve clinical trials across the EU.
The platform is intended to serve as an advisory body, bringing together a wide range of stakeholders—patient organizations, research institutions, industry representatives, and other relevant parties—to collaboratively find solutions to existing challenges in clinical research.
The objective of the consultation was to collect diverse perspectives and experiences to enhance the efficiency and quality of clinical trials in the EU. Feedback gathered during the consultation helped shape ACT EU’s strategic planning and supports the development of measures to optimize the clinical research environment in Europe.
France National Cancer Institute (INCa)
The INCa organizes public consultations to involve citizens in shaping the French Cancer Plan.
One notable example is their focus on cancer prevention strategies, where citizens provided input on awareness campaigns and health education policies.
United Kingdom Cancer Research UK (CRUK)
CRUK regularly holds consultations with citizens and patients to influence research priorities.
For example, consultations have guided funding decisions for patient-focused research projects and public awareness campaigns and screenings
Link: https://www.gov.uk/government/news/uk-nsc-consultations
Citizen Jury for screening: Link: https://www.anthonynolan.org/sites/default/files/2024-11/SCCG%20Citizens%27%20Jury%20Report%202024.pdf
United Kingdom England's National Cancer Plan Public Consultation (2025)
The Department of Health and Social Care (DHSC) in England initiated a public consultation to shape the National Cancer Plan. This effort aims to align with changes set out in the forthcoming 10-Year Health Plan.
The consultation has been open to the public, encouraging individuals to contribute their perspectives on cancer prevention, diagnosis, treatment, and care.
The feedback collected will inform the development of a comprehensive cancer plan for England, with the DHSC expected to publish the finalized plan later this year.
Link: PRDA
Europe European Guidelines on Cancer Prevention, Screening, and Diagnosis
The European Commission’s Joint Research Centre has opened public consultations to gather insights, data, and feedback on European guidelines concerning cancer prevention, screening, and diagnosis.
Stakeholders, including healthcare professionals, patients, and the general public, are invited to share their perspectives to enhance the effectiveness of cancer control measures across Europe.
The aim is to update and refine guidelines to improve cancer prevention strategies, early detection through screening programs, and accurate diagnostic procedures.
Details and participation options are available on the European Commission’s website.
United Kingdom Children's Cancer Centre Location Consultation in London
A public consultation was conducted to determine the future location of a proposed children’s cancer center in London.
The consultation sought input from patients, families, healthcare professionals, and the public regarding two potential sites: Evelina London Children’s Hospital in Lambeth and St George’s Hospital in Tooting.
To gather community perspectives to inform the decision on the most suitable location for the new center, ensuring accessibility and quality care for pediatric cancer patients.
Details of the consultation process and options are provided by Transformation Partners in Health and Care.
Link:nhs.uk
Ireland National Cancer Strategy 2017–2026
The Irish government conducted public consultations to inform its National Cancer Strategy.
Feedback was gathered from patients, families, and the general public to identify priorities like survivorship care and equitable access to treatment.
Regular public consultations on policy and care: Link: https://www.gov.ie/en/search/?type=consultations&organisation=department-of-health#search_result_label_id
Europe European Medicines Agency (EMA)
The European Medicines Agency (EMA) has initiated a public consultation on version 11 of its Quality Review of Documents (QRD) template, aiming to enhance the clarity and relevance of package leaflets for centrally authorised human medicines.
Key proposed modifications include shortening the leaflet by removing or making certain text optional, introducing standard statements to improve patient-friendliness and consistency, relocating important information to the beginning, clustering related information by subject, and reorganising warnings and precautions in a more logical order.
These changes are intended to make the package leaflet more understandable and relevant to patients, while complying with the current legislative framework, Directive 2001/83/EC. Stakeholders—including the pharmaceutical industry, national competent authorities, patients, healthcare professionals, and academia—are invited to submit their comments by 31 August 2025
Belgium Kankerfonds Public Engagement
The Kankerfonds (Cancer Fund) used citizen consultations to understand public views on cancer care accessibility and affordability, leading to policy proposals for improved financial support for patients.
Italy Citizens' Jury on Prostate Cancer Screening
An Italian citizens’ jury was convened to deliberate on individual screening for prostate cancer using the Prostate-Specific Antigen (PSA) test. Jurors engaged with expert testimonies and discussions, ultimately recommending:
- Public Awareness Campaigns: Informing the public about the benefits and limitations of PSA testing.
- Encouraging Preventive Measures: Promoting healthy lifestyles as a form of cancer prevention.
- Targeted Information Dissemination: Aiming educational efforts at general practitioners and the public to facilitate informed decision-making.
This approach ensured that public values and concerns were integrated into health policy decisions regarding cancer screening.