Patient advocate · Concept developer · Speaker
I turn lived experience into practical ideas that help people feel seen, heard and included in cancer care.
01 — Hello
My work sits where lived experience, strategy and creative thinking meet. As a cancer survivor, former healthcare professional and founder, I bring a perspective that is both personal and practical.
My perspective
I have experienced cancer care from both sides: as a former nurse practitioner and as a patient. Today, I use that dual perspective to ask better questions, challenge assumptions and create solutions that reflect what matters to people.
Inclusion is not an extra. It is how better healthcare begins.
02 — Selected work
From practical tools to safe spaces and new conversations, each initiative starts with a real unmet need.
A sensory experience that helps professionals understand how taste changes can affect eating, wellbeing and quality of life during cancer treatment.
Awareness through experienceA confidential space where patient advocates can reflect, connect and protect the person behind the advocacy.
Peer support & resilienceA welcoming gathering that brings LGBTQIA+ voices, allies and cancer organisations together to build a more inclusive oncology community.
Equity in cancer careHelping patients and professionals recognise nutrition concerns earlier and make them easier to discuss throughout cancer care.
Early recognition03 — Speaking engagements
Selected international contributions over the past 25 months, focused on trust, equity, patient engagement and better research.
Madrid · Spain
Speaker during “Building Trust in the Patient–Doctor Relationship,” discussing barriers to trust in uro-oncology and practical ways to strengthen patient engagement.
Athens · Greece
Co-led the pre-conference patient session with Marek Lichota, presented its conclusions and spoke about establishing the ONCA Patient Stakeholder Group.
Brussels & online
Panellist in an interactive discussion on implementing equitable, personalised and sustainable cancer-screening programmes.
Copenhagen · Denmark
Panellist on optimising clinical-trial data collection while reducing burdens on patients and research sites. Also interviewed for The Clinical Data Lighthouse podcast.
04 — Publications & media
Selected contributions that bring patient experience into research, policy, practice and public conversation.
A peer-reviewed framework supporting better-informed, collaborative decisions between patients and healthcare professionals in urology. Published in European Urology Focus, 12(2), 165–167.
View on PubMedExamines diversity and inclusion within patient-organisation leadership across eight countries, identifying systemic barriers and practical recommendations for more representative governance.
Read the publicationExplores inequalities in cancer prevention, treatment and care, and presents policy priorities for reducing disparities across Europe. Published in JCO Global Oncology.
Read the journal articleA patient-focused article highlighting how chemotherapy-related taste changes can affect nutrition, enjoyment of food and overall quality of life.
Read the articleDemonstrates why patients must be meaningfully involved when determining which outcomes should be measured in prostate cancer research. Published in European Urology Focus, 7(5), 943–946.
View the publication recordA supportive children’s book designed to help children living with serious illness explore their experiences, express their emotions and start difficult conversations with parents, caregivers and healthcare professionals.
Robert Greene: concept developer, editor and translator
Author and illustrator: Myrjam Boone
Additional contributor: Elroy Aijal
A Bayer interview addressing prostate cancer, quality of life, patient involvement and inequalities affecting Black men.
A HungerNdThirst Foundation and Wageningen University & Research project producing practical factsheets for patients and healthcare professionals.
An OLVG story about the personal and social effects of taste alteration and the motivation behind establishing the HungerNdThirst Foundation.
A feature on the HungerNdThirst Foundation and Wageningen University & Research collaboration around smell and taste changes.
A feature discussing dysgeusia, the HungerNdThirst Foundation and the development of ATE Cookies® as an awareness tool.
A NOS feature about Robert Greene and the ATE Cookie®, designed to simulate the metallic taste some patients experience during treatment.
A Danone feature about dysgeusia, personal experience and collaboration between Danone Nutricia Research and the HungerNdThirst Foundation.
05 — What drives me
06 — Ways I contribute
Bringing an independent patient perspective to boards, programmes and healthcare strategy.
Developing thoughtful concepts, campaigns and experiences around unmet patient needs.
Building bridges between patients, professionals, organisations and communities.
Moderating and speaking on equity, inclusion, nutrition and patient-centred cancer care.
Collaboration starts with a conversation
I am always interested in thoughtful collaborations that create meaningful change for patients.
Start a conversation