The rich dataset that comes from patient engagement
Earlier this year we talked about the importance of patient advocacy in our work at the Focal Therapy Clinic, describing how the vast majority of patients who approach us do so for a second opinion, following experience with or advice to proceed with treatments that lead to fear, uncertainty and doubt in their lives. Our patient advocate team have spoken with hundreds of men over the last two years, and have developed a comprehensive picture of what is happening to men who are diagnosed with early-stage prostate cancer across the country and how to reduce, and sometimes eliminate, the FUD underlying their treatment decisions.
Patient voices, heard through the personalised patient engagement practiced here at the Clinic, give us the richest dataset to inform our own practice as well as the knowledge of patients, practitioners and policymakers in the general public.
They help us to understand some of the themes we see playing out in the prostate cancer “community” – ageism, health inequalities across geography and race, mental health, and the challenges of accessing honest & unfiltered information about diagnostic procedures and treatment options.
In a world driven by information, this qualitative data is invaluable and enables us to continually evolve our approach to patient care. For our patients, the level of knowledge and empathy shown by our patient advocates gives them the confidence to make crucial decisions about their treatment and, most importantly, share this knowledge and experience with others.
Many have found that friends, family members, and coworkers had little understanding of the many ways prostate cancer changes lives. Their experience with us has given them a vocabulary and a confidence to engage people around them without fear or judgement, and in many cases, to actively build a community of knowledge and practice. Many of our patients have taken part in our podcast series, motivated by an opportunity to share their experience and encourage others.
Over the last few months some patient experiences stand out in their detail and the insights they gave us.
Mr D, aged 88, is severely sight-impaired, partially deaf, and has had a pacemaker for about 6 years. He received an unexpected prostate cancer diagnosis which has yet to be confirmed by an MRI scan, or a biopsy. Neither he nor his partner received any information or counseling on prostate cancer, and their understanding is very limited. He has also received conflicting information from his consultant and his GP concerning his PSA history, which is concerning. His partner was told on the same day as the diagnosis that no treatment will be offered to Mr D. She was very happy to receive the information we sent her about prostate cancer, and she told us she now feels more informed. She has subsequently been able to use vocabulary and information related to prostate cancer to consult further with Mr D’s GP, on his behalf.
Mr P has been waiting anxiously for a referral for a biopsy, having survived a 5-year struggle against leukaemia. The treatment he received has impacted his lungs, eyes and kidneys, and he feels neglected, having waited 8 weeks for an NHS referral appointment, thus far. Being able to access basic services like an MRI and a biopsy through TFTC will be life-changing for him.
Mr M suffers from arterial fibrillation and has had hip surgery under local anaesthetic due to potential complications with general anaesthetic. He feels limited in terms of his treatment options, but he now feels comfortable discussing his situation with one of our consultants who has the expertise to deal with more complicated cases.
Mrs O called the Clinic, serendipitously, on the day that her husband was undergoing his biopsy at a London hospital. She expressed sincere gratitude for the conversation, saying that we were a ‘port of call’ during one of her darkest hours, whilst she waited anxiously to see her husband after the procedure. She felt comforted to be able to ask questions, to express her emotions, and to address her uncertainty about the future. Since then, she has phoned the Clinic several times to ask for clarity on issues that have been unclear, prompting her husband to request a referral to one of our consultants for a second opinion on his diagnosis.
Each of these patient experiences, along with hundreds of others we’ve engaged with, demonstrate the complexity and emotional toll prostate cancer imposes on men and their families. Fortunately, as we build our knowledge based on these conversations, we’re increasingly able to offer support and connect patients with other health care providers who can help in areas where we can’t.
Do you have an experience to share, or are you interested in learning more about other patients’ experiences with prostate cancer? We’d love to hear from you.