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For Patients and the Public

Putting patients’ voices at the heart of everything we do

We’re committed to building public trust with our partners by involving patients in how their data is used.

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At Flatiron Health UK, we believe people who are affected by cancer should have a say in how their health data is used.

Patients and public members are central to informing and shaping our work. Here are a few ways we involve patients and the public in our partnerships.

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Our commitment to patient and public involvement

We incorporate the voices and experiences of UK cancer patients in all areas of our work.

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Listening and learning

We host conversations with local communities to understand what matters most to people when it comes to data use and cancer research.

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Respecting patient choice

We fully honour the national data opt-out and local opt-outs. Patients can choose not to share their data, and our current average opt-out rate across our NHS partners is just 4%.

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Being transparent

We explain how data is used, who can access it, and what safeguards are in place. Our data is only used for research and care improvement and never for insurance or marketing. Learn more about our research oversight process.

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Including patients in decisions

As well as our Patient Voices Panel, all data access requests go through an Ethics Review Panel that includes both clinicians and patients. This helps ensure data is used responsibly and always for public benefit.

Hear from our Patient Voices Panel

Since 2021, Flatiron Health UK has involved and consulted patients and carers on a broad range of topics to shape our approach.

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Patient Voices Panel

Our Patient Voices Panel helps us to reflect and respond to the voices and experiences of UK cancer patients and carers in our work. See what we've been up to in our Impact Report.

Meet our current panel members

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Helen Bulbeck

Helen is co-founder of brainstrust, having experienced cancer as both a patient and a caregiver. She is passionate about using her experience to support the thousands of patients who have brain cancer and brings a PPI perspective to all cancers.

 

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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.

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Linda Galbraith

Linda, a collector of rare diseases, joined the Flatiron Health UK Patient Voices Panel last year, with a background in health service management, psychology and board membership, primarily in the third sector.

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Terry Lock

Terry is a retired IT professional. He is actively involved in a number of different health groups advising on the use of and access to patients data, both locally in Nottinghamshire and across the UK. Terry enjoys the chance to leverage his skills and expertise to help benefit patients and the public. He has no lived experience of cancer and is a lay representative on the Patient Voice Panel. 

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Maria Lawal

Maria is an osteosarcoma survivor with over 15 years of lived experience navigating cancer and other health co-morbidities. She has served as a co-researcher for the BRIGHTLIGHT study, the Micrima community project, and various other clinical research initiatives. A passionate advocate for including underrepresented patients as co-researchers in clinical trials, Maria strives to inspire and promote a more inclusive, patient-centred approach to healthcare.

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Meet former & founding panel members

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Emily Bridges
Emily is an experienced content, communications and strategy expert. She co-founded IBDrelief, a for-purpose start-up focused on improving disease education for inflammatory bowel disease patients and now works in strategy development in a charity and membership body in the mental health sector. She joined the Patient Voice Panel as a lay representative, with no lived experience of cancer, and was on the panel between 2023-2025.
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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. 

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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.

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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.

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Interested in getting involved?

Contact us today to learn more about our patient and public involvement opportunities.

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