prioritising patient voice

Prioritising the patient voice: My experiences working with Flatiron Health UK as a patient advocate

By Bob White, written in collaboration with Emily Bridges (PVP)

Over two years ago, I embarked on a unique adventure by joining Flatiron Health UK's Patient Voices Panel (PVP). Back then, I wasn't entirely sure what to expect — many initiatives of this nature can sometimes feel like mere checkboxes. However, my experience with Flatiron has been anything but typical, and I'm excited to share with you the journey I’ve been on so far.

When Flatiron proposed their Patient Voices Panel and invited me as a prostate cancer survivor and advocate, I joined with open eyes and a hint of scepticism. Almost three years into this journey, I am now a devoted advocate for their mission. I genuinely believe in the positive impact Flatiron can make on cancer research and the use of cancer data within the NHS.

Sharing my personal cancer journey as part of the PVP experience has been not only personally therapeutic but also instrumental in my role as an advocate for newly diagnosed prostate cancer patients. Running the prostate cancer support group, PROSTaid, in my local area, and experiencing men’s cancer journeys along with them, I firmly believe in the power of dialogue to support others facing similar challenges, promoting both mental health and shared coping mechanisms.

I’ve also appreciated the opportunity to voice concerns anonymously through questionnaires provided by Flatiron. This anonymity allows me to speak openly on any topic, underscoring Flatiron's commitment to transparency and highlighting the significance of our opinions.

PVP opportunities and experiences

Upon joining, my initial lack of knowledge about how data operates within the NHS prompted me to seek opportunities for self-improvement. I participated in numerous online training sessions and workshops with organisations such as useMYdata and Cancer Research UK. These experiences have shifted my entire attitude toward data, particularly its use in the NHS. Previously viewing it as a fragmented and less useful part of the cancer journey, I now recognise, thanks to Flatiron's analytical approach, that data can be a force for good in advancing cancer research.

Alongside this, I’ve been lucky to be able to get involved in a variety of different experiences and opportunities representing the PVP. 

Participating in a "pitch workshop" alongside my fellow panel members, we provided valuable insights to Flatiron on how to communicate their work more effectively. Our focus was on making their messaging "patient-friendly" for universal understanding. This approach not only empowers patients to make informed decisions about their healthcare but also strengthens the bridge of trust between Flatiron and the individuals whose voices we represent. Our commitment lies in ensuring the information shared is not just comprehensive but also embraces a patient-friendly tone, ultimately enhancing transparency and engagement within the wider public.

Another example of this transparency is Flatiron's recent announcement of a "research oversight process" for managing data access requests. A separate independent panel including patients, clinicians, and lay representatives, oversee the approval of these research projects. Both examples are testament to Flatiron’s commitment to ethical and transparent practices. I had the honour of meeting the new panel, sharing my cancer journey, and contributing to their understanding.

I’ve also been involved in the recruitment of two new lay panel members to the PVP. Flatiron was recently asked by the Health Research Authority’s governing body, the Confidentiality Advisory Group to expand the panel and it was a privilege to meet potential members through Zoom calls, introducing myself, sharing my story, and participating in the assessment process. This inclusive approach demonstrates Flatiron's dedication to involving the PVP in all aspects of their work.

A recent highlight was the opportunity to participate in an online useMYdata conference with Leeds Teaching Hospitals NHS Trust (LTHT), showcasing the exciting collaboration between Flatiron and LTHT announced in 2023. During this conference, I had the privilege of sharing my personal experiences with the LTHT patient panel, emphasising how Flatiron's mission aligns with the overarching goal of enhancing cancer outcomes for NHS patients.

The collaboration between Flatiron and LTHT not only brings about transformative changes for patients within the NHS, but also serves as a source of personal fulfilment and excitement for me. Witnessing the potential positive impact on patient outcomes, coupled with the anticipation of Flatiron's other forthcoming partnerships, further reinforces my dedication to this cause. As I look forward to attending an in-person meeting with another NHS trust considering collaboration with Flatiron, I am eager to contribute to the ongoing dialogue, fostering additional collaborations and meaningful interactions that will ultimately benefit patients and further enrich my personal journey as a patient advocate. I am eager to see how these collaborations will continue to shape the future landscape of cancer care.

My journey with Flatiron and the Patient Voices Panel to date has been a brilliant experience. I'm thrilled to be part of an organisation dedicated to transparency, patient engagement, and improving cancer outcomes. The mission is clear, the path is exciting, and I am committed to playing my role in ensuring it stays that way with my voice as a patient advocate.