The voices and lived experiences of UK cancer patients shape everything that we do at Flatiron Health UK. At the core of our mission is our belief that people who are affected by cancer should be informed and consulted about the use of their health data for research purposes. And we’re committed to building public trust with our NHS partners by involving patients every step of the way. Drawing on our UK partnerships in Leeds, Newcastle, Leicester and Glasgow, we show how we put patient voices at the heart of our work before, during— and long after — we form an NHS partnership. Our partnership blueprint and approach has approval from the Health Research Authority.
Before the partnership: outreach, insights and listening
In our early discussions with a potential new NHS partner, Flatiron’s Patient and Public Involvement and Engagement (PPIE) team hosted in-person or virtual patient engagement sessions at the local NHS organisation. These sessions give us the chance to connect directly with local patients, listening to their insights, answering their questions, and discussing how health data can support future research.
As part of these early conversations, we introduce the work we do at Flatiron, give patients insights into how the potential partnership will work, and the importance of curated, high-quality data for research. Some of the topics we might explore include how people feel about the data partnership, or any concerns they may have about their data being used for research.
Our team also introduces and explains the local and national opt-out processes that we support at the local NHS organisation, so that they can opt-out should they wish to.
Experience from our NHS partnerships shows that when we explain the benefits of sharing their data, the vast majority of patients are eager to support Flatiron’s work with their local NHS Trust.
Members of Flatiron’s Patient Voices Panel also join these initial meetings.
Dr. Vanessa Acquaah, Scientific Engagement and Commercial Partnerships Associate at Flatiron, explains:
After a partnership is confirmed: keeping patients informed
After we sign a partnership agreement with a new NHS partner, the NHS Trust contacts all living patients at the Trust over the age of 18 with a current or previous cancer diagnosis who hasn’t previously opted-out from data sharing for research and planning purposes via the National Data Opt-Out. Written in collaboration with our NHS partner, the letter explains the wider context of the partnership. It includes information on how patients’ data will be used and protected along with how to opt out of sharing their data, should they choose to.
Alongside the letters, printed leaflets are made available in clinical areas across prospective partner sites. They provide an easy-to-read summary of how data supports research, alongside straightforward instructions on how to opt out.
To date, over 85,000 letters have been sent across Flatiron’s first three NHS partner sites: Leeds Teaching Hospitals NHS Trust, The Newcastle Upon Tyne Hospitals NHS Foundation Trust, and University Hospitals of Leicester NHS Trust. Our fourth partner, NHS Greater Glasgow and Clyde, is currently in the early stages of outreach and the opt-out process will begin there soon.
Opt-out rates remain low: across our first three NHS partner sites, an average of just 2.9% of patients have chosen to opt out so far.
The high level of trust built across our network is a direct result of open dialogue between Flatiron, patients, and our Patient Voices Panel (PVP).
Patient Panel member Maria Lawal highlights why this community trust matters so deeply when discussing data use with hesitant patients:
Flatiron’s commitment to engaging patients extends far beyond initial site set-ups. Partner site outreach is an ongoing effort, and we continuously engage patients as projects evolve.
“Over several years into our partnership with Leeds Teaching Hospitals NHS Trust, for instance, we continue to run interactive workshops on emerging topics like AI and machine learning” Vanessa Acquaah explains. “Putting patients first requires walking alongside them at every stage of the journey, ensuring they remain meaningfully connected to the true impact of their data”.
Research Transparency Panels
To ensure patient data is used responsibly, our Research Oversight Process relies on an independent, external Research Transparency Panel. The panel reviews every research proposal to ensure that every project directly supports our mission to improve cancer care and offers genuine benefits to patients and the public.
After each review, we summarise and publish panel discussions on Flatiron’s Data Access Register, ensuring that there is complete transparency around who is accessing our data and why.
The Patient Voices Panel
PVP members have an active, leading role in patient involvement meetings. Drawing upon their lived experience of cancer, they make sure that Flatiron is held accountable, communicating the most important information to cancer patients and understanding and listening to what patients have to say. But that’s far from the only aspect of their work.
“Recently the panel has moved beyond just advising Flatiron UK,” says Brian Kennedy. “They are actively encouraging other patients to advocate for their own data, helping us build the trust necessary to expand our network.”
Panel member Maria Lawal, who was diagnosed with a rare bone cancer at 15, has played a key role, including speaking with local cancer patients at a Flatiron engagement session in Scarborough following our 2023 partnership with Leeds Teaching Hospitals NHS Trust.
Since then, she has also been involved in a three-part webinar series hosted by Flatiron and Use My Data. Maria has also written a follow-up blog post for Flatiron’s website to encourage more people from marginalised communities to take part in research and share their data.
“Most of the concerns about sharing your data, especially within the Black community, is about the lack of transparency, lack of trust. Also, the negative things you hear in the media, like data leaks and hacks,” says Maria. “That was the perspective I had before. And I feel like most people from my community had as well. That becomes a huge barrier to wanting to get involved in a clinical trial, or in research. So, I wanted to highlight that we have great companies like Flatiron doing wonderful things, but they need you to be willing to share your data. Because in the long run, it is making a real-life difference for cancer patients.”
Patient voices: what cancer patients say about working with Flatiron
Further information
Read more about our patient and public involvement activities: https://flatironhealth.co.uk/patients-and-public
Find out about our partnerships with the NHS: https://flatironhealth.co.uk/nhs-partners
Learn more about our research oversight process, including the Research Transparency Panel: https://flatironhealth.co.uk/data-governance
Take a look at our frequently asked questions for patients at our first NHS Partnership with Leeds Teaching Hospitals NHS Trust: https://www.leedsth.nhs.uk/research/our-research/research-data-strategy/research-data-collaborations/flatiron/frequently-asked-questions/
Visit our blog for posts from patients and public about their experiences of working with Flatiron: https://resources.flatironhealth.co.uk
