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Why health data sharing matters: a patient voice perspective
As a patient advocate, you are often left wondering: What impact did I really make? Did I speak too much, or did I not share enough? Those questions can stay with you after workshops, team meetings, and collaborative conversations, especially when you care deeply about making a meaningful contribution.
Helen Bulbeck
Helen Bulbeck is co-founder of brainstrust, a national brain cancer charity providing networks and communities for patients and caregivers. Drawing from her own experience as both a patient and caregiver, she joined the Panel to help shape research that truly matters to people living with cancer. Helen focuses on high-performance coaching and shared decision-making, believing in the power of collective wisdom to drive effective advocacy and patient empowerment.
Chris Carrigan
Chris is a founding member of useMYdata, COO of DATA-CAN and serves as an expert advisor to Flatiron Health UK's Patient Voices Panel. Chris has worked across the UK patient data landscape for more than 20 years.
Linda Galbraith
Linda joined Flatiron in summer 2022, drawn by a desire to ensure research reflects the real world — an interest shaped by eight years on an Ethics Committee. Living with an extremely rare cancer herself, she was drawn to an organisation with access to international cancer research. Her professional background spans strategy, hospital management, social work, the arts and consultancy. She now contributes through research and safeguarding roles, gives talks to students and researchers, serves as co-investigator on several studies, and is a lay reviewer for the BMJ. Outside of PPI, she writes music and has worked with communities, schools and prisons.
Terry Lock
Terry joined the Panel in September 2023, bringing a career background in IT programme management — including work on the NHS Spine system — to help shape research and advance the use of patient data. Though not a cancer patient himself, his commitment is deeply personal, with both parents and several friends affected by cancer. He remains actively involved with groups working on patient data across the UK, Europe and beyond. Outside of PPI, he chairs a charitable trust supporting a local country park and nature reserve, and manages a registration system for a national consumer group.
Maria Lawal
A UK-based osteosarcoma survivor with over 15 years of experience in oncology patient engagement, Maria joined the Flatiron Patient Voice Panel in October 2024 to help shape real-world evidence that reflects what patients actually live through. She co-creates frameworks that elevate patient insight to the level of clinical evidence, moving beyond tokenistic involvement towards true co-production. She has partnered with organisations including Microsoft, Bayer, Roche, Siemens and IQVIA, and outside of advocacy, writes children's books on mindfulness and resilience.
Geoff Rollason
A prostate cancer patient himself, Geoff joined the Panel in January 2026 to ensure the voices of prostate cancer patients are heard in this work. He brings nearly four decades of experience in healthcare settings, with his final ten years focused specifically on cancer patients. Since retiring in 2025, he continues to advocate for patients as a volunteer with West Midlands Cancer Alliance and NHS England, with a particular interest in influencing healthcare policy, management and delivery.
Kaz Laljee
Kaz Laljee joined the Patient Voices Panel in late 2025 as a lay representative, with the aim of helping improve research and outcomes for people living with cancer. Diagnosed with primary progressive multiple sclerosis in 2007, he brings extensive lived experience of the NHS, research participation, and patient advocacy. Kaz has worked with a wide range of stakeholders, including NHS organisations, public bodies and pharmaceutical companies, contributing to panels, committees and research initiatives. Alongside this, he works in Digital Marketing and AI. Outside of his professional work, Kaz enjoys spending time with his family and bringing creativity into both his personal and professional projects.
Emily Bridges
Bob White
Bob was a founding member of the Patient Voices Panel. He was diagnosed in 2011 with prostate cancer and is now in remission. Bob runs a local prostate cancer support group (Prostaid) and is passionate about the treatment and outcomes of men with prostate cancer. Bob believes the use of patient data is a vital ingredient in the national fight against all types of cancer. Prior to his retirement, Bob was a senior police officer and then a senior fraud investigator in the banking and insurance industries.
Della (Dolapo) Ogunleye
As a founding member of the Patient Voices Panel, Della brought her unique energy, enthusiasm and insight. We are grateful to have been part of her outstanding commitment to patient advocacy, and diversity in research, during the final years of her own cancer journey.
Lesley Shannon
Lesley helped found the Patient Voices Panel, and contributed her insights and guidance during its first years. She brought to the panel her unique perspective on colorectal cancer and research. She shared her experience and learning from her on-going work advocating in Scotland and beyond for improvements to the cancer journey, including early diagnosis. While no longer a panel member Lesley continues to advocate for cancer research and improvements in patient care.