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.
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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.
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, 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.
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.
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.
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.
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 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.
