Independent Cancer Patients' Voice

What Independent Cancer Patients' Voice does

Independent Cancer Patients' Voice (ICPV) is a UK-registered charity (no. 1138456) founded in July 2009 by Maggie Wilcox, operating as a volunteer-run patient advocacy group with seven paid staff and an active membership of more than 40 patients and carers across at least 12 tumour types. Its operational purpose is to educate, support, and deploy cancer patients as lay representatives on clinical trial management groups, ethics committees, and research design panels at major UK institutions including the Universities of Edinburgh, Birmingham, Warwick, Barts Cancer Institute, Royal Marsden, the Christie, and Royal Surrey County Hospital, alongside UK-wide bodies such as the National Cancer Research Institute (NCRI), Cancer Research UK, and NIHR. ICPV's core product surface is threefold: the VOICE (Vision on Information, Confidence and Engagement) course, a five-day intensive training programme in cancer biology, research terminology, and study design developed with Barts Cancer Institute and described as unique in the UK; recurring Study Days hosted at cancer research centres of excellence; and a closed Google Group used for member-to-member review of research papers and trial materials. The organisation does not sell products to consumers; its revenue is philanthropic and fee-based, sourced approximately 35% from pharmaceutical companies, 20% from health charities, 19% from academia, 13% from member fundraising, and 7% from fees charged for patient involvement services, with funds directed toward education, study days, VOICE course delivery, and conference attendance. ICPV has no proprietary technology, no AI/ML capability, and no patents or trademarks; its competitive position rests on its independent status, the institutional depth of its partnerships, and the accumulated reputational capital reflected in two MBE honours and a 2023 BMJ UK Research Paper of the Year co-credit.

Name

Independent Cancer Patients' Voice

Legal name

Independent Cancer Patients' Voice

Website

https://independentcancerpatientsvoice.org.uk

Company type

Private

Founded year

2009

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: Income from multiple sources: pharmaceutical companies (35%), members' fundraising (13%), health charities (20%), academia (19%), and fees charged (7%). Funds are used for education for members including study days, the VOICE course, and attending conferences and meetings.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels8 records

Core offering

Independent Cancer Patients' Voice is a UK patient advocacy charity that educates, supports, and mentors cancer patients and carers so they can participate as patient advocates in clinical cancer research. Its core offerings are the VOICE Science for Patient Advocates training course (developed with Barts Cancer Institute), Study Days that bring patients together with clinicians and researchers, and an online member discussion forum for reviewing research and trials.

Product overview

Independent Cancer Patients' Voice (ICPV) is a patient advocacy charity offering a portfolio of educational and engagement services centered on bringing the patient voice into clinical cancer research. The core offerings consist of: the VOICE (Vision On Information, Confidence and Engagement) Science for Patient Advocates course—a week-long intensive training program developed with Barts Cancer Institute covering cancer biology, research methodology, and scientific evaluation; Study Days that connect patients with leading researchers and clinicians; and a secure Online Discussion Group enabling members to exchange views and review research papers. These services work together to educate, support, and mentor patients so they can participate effectively as advocates alongside clinicians and researchers in clinical trials and research activities.

Differentiator

Problem solved

Functional benefit

Brands

• VOICE: Science for Patient Advocates: A five-day intensive course providing patient advocates with introduction to basic cancer biology, epidemiology, statistics, research terminology, study design, and critical evaluation of scientific papers. Developed with Barts Cancer Institute. The only course of this type in the UK.

Products and services

• VOICE: Science for Patient Advocates A week-long intensive training course providing patient advocates with an introduction to basic cancer biology, epidemiology, statistics, research terminology, study design, and critical evaluation of scientific papers. Developed in partnership with Barts Cancer Institute, Queen Mary University of London. It is the only course of this type in the UK and is intended for cancer patients and carers who want to engage more effectively with cancer research.
• Study Days Educational sessions where ICPV members meet academics and clinicians working in cancer research at centres of excellence. These sessions aim to raise patients' level of clinical knowledge and empower them to speak as equals with professionals.
• Online Discussion Group (Google Group) A secure closed email discussion forum where ICPV members can exchange views and review research papers. It allows 'virtual' members to participate and comment on new trials and research electronically.

Named customers8 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core, major and minor.

• Barts Cancer Institute, Queen Mary University of LondoncoreStrategic or Co-development PartnerCollaborative partnership to develop and deliver the VOICE (Vision On Information, Confidence and Engagement) course - Science for Patient Advocates. The internationally renowned Barts Cancer Institute worked with ICPV to create this unique, tailor-made course providing week-long intensive training in basic cancer biology, research terminology, and study design.
• Cancer Research UKcoreStrategic or Co-development PartnerCancer Research UK values the important work of ICPV in enabling valuable engagement between patients and cancer researchers. ICPV members are involved with CRUK Involvement Network and participate in CRUK-supported events and activities.
• National Cancer Research Institute (NCRI)coreStrategic or Co-development PartnerICPV works within the NCRI framework to enable proper monitoring and review of activity and value. ICPV works at strategic level with clinicians and clinical researchers to improve clinical research and outcomes for all cancer patients.
• University of Sussex - SHORE-CmajorStrategic or Co-development PartnerICPV partners with SHORE-C (Sussex Health Outcomes Research & Education in Cancer) for annual Summer School events, hosting two-day sessions with stimulating presentations and discussions on topics ranging from digital consent and robots to stress and cancer.
• NIHR (National Institute for Health and Care Research)majorStrategic or Co-development PartnerICPV members serve as PPIE Representatives to NIHR Kent, Surrey and Sussex CRN Partnership Board, and ICPV works with NIHR Academy as Patient Advocate. Members participate in NIHR Personal/Fellowship Awards interviews.
• Make2ndsCountminorStrategic or Co-development PartnerPatient advocacy organization for secondary breast cancer. ICPV members collaborated with Make2ndsCount at Summer School 2024 and share mutual members.
• Fight Bladder Cancer UKminorStrategic or Co-development PartnerPatient advocacy organization. ICPV members collaborated with Fight Bladder Cancer UK at Summer School 2024.
• Strive for FiveminorStrategic or Co-development PartnerPatient advocacy organization. ICPV members collaborated with Strive for Five at Summer School 2024.
• Breast Cancer NowmajorStrategic or Co-development PartnerICPV members work with Breast Cancer Now's Cell and Tissue Bank and participate in Breast Cancer Campaign (now merged) activities. Some ICPV members are also volunteers for Breast Cancer Now.
• Imperial College LondonminorStrategic or Co-development PartnerImperial College produced an excellent guide to support PPI groups called 'Navigating Digital Health' to enable navigation of data and AI in medical research.

Scale indicators3 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• Fight Bladder Cancer UK: UK bladder cancer patient advocacy charity that co-hosted ICPV's 2024 Summer School. Comparable as a small UK patient-advocacy group collaborating with researchers and other cancer advocacy organisations.
• Oesophageal Patients Association (OPA): UK oesophageal cancer patient support and advocacy charity, formerly chaired by current ICPV Chair Dave Chuter. Directly comparable as a disease-specific UK cancer patient advocacy group engaged with research and clinical teams.
• Cancer52: UK alliance of patient-support charities for less-common cancers, of which ICPV's former President Adrienne Morgan served as secretariat. Closely comparable as a small, UK patient-advocacy network engaged in research representation.
• Make2ndsCount: UK patient advocacy charity for secondary (metastatic) breast cancer, co-hosted ICPV's 2024 Summer School and shares mutual members. Comparable as a niche UK patient-advocacy organisation focused on cancer research engagement.
• European Cancer Patient Coalition (ECPC): Europe-wide umbrella of cancer patient organisations advocating for patient involvement in research and policy. Directly comparable as a patient-advocacy voice in cancer research, though operating at EU level rather than UK-only.

Broad incumbents

• Breast Cancer Now: Major UK breast cancer charity formed via merger of Breast Cancer Campaign and Breakthrough Breast Cancer. Several ICPV trustees (Adrienne Morgan, Chris Finch) and members have served Breast Cancer Now/Breast Cancer Campaign, and the two collaborate on research and tissue bank access — comparable in patient-advocacy mission for breast cancer research.
• Cancer Research UK: The UK's largest cancer charity, with its own CRUK Involvement Network of patient representatives. Comparable because it funds and shapes the same cancer research pipeline ICPV engages with, though it is far larger, disease-focused, and not positioned as 'independent of established charities'.
• Macmillan Cancer Support: Large UK cancer charity providing patient services, information and influencing research. Comparable as a major cancer patient voice in the UK, though it is a broad service-and-support charity rather than a research-engagement specialist.

Others

• NIHR INVOLVE / Centre for Engagement and Dissemination: The UK's national body coordinating PPIE in health and social care research. Directly comparable because ICPV members serve as PPIE representatives to NIHR and INVOLVE sets the standards ICPV's VOICE course effectively delivers against; it is an ecosystem enabler rather than a competitor.

Emerging players

• EUPATI (European Patients' Academy on Therapeutic Innovation): European-wide patient-advocate training programme on medicines R&D. Directly comparable to ICPV's VOICE course as a structured patient-advocate education platform, but operating at EU rather than UK level and with broader therapeutic scope.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCG8sAdaaWDYJoyNspjooHtg
• Facebookfacebook.com/Independentcancerpatientsvoice
• LinkedInlinkedin.com/company/independent-cancer-patients'-voice

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Independent Cancer Patients' Voice