To all my friends, old and new, on LinkedIn – a heartfelt thank you for your immediate notice, ideas, and wonderful support. We are now in a much better place with options for Zahra Khan's treatment.
Zahra’s case is a powerful reminder of the importance of ‘access to quality healthcare’ and the incredible impact of #empathy and #collaboration
on platforms like #LinkedIn. Human disease and the need for treatment and care is a shared experience across families, homes, and workplaces for all of us. This universal pain-point highlights our collective willingness to solve problems and share insights beyond the barriers of system, commerce, and jurisdiction.
A week later, after receiving hundreds of messages, recordings, and emails, here’s what I learned (along with Zahra Khan and Babar Shaikh):
1. The Power of Patient Stories: Nothing is more powerful than the story
of lived experiences from survivors of rare or late-stage cancers. Their user
experience, confidence, and outcomes (PROs) on therapy side effects (e.g.,
ADCs, PARP inhibitors, DCTs, immunotherapy, and chemotherapy), consultation consequences, advocacy networks, and lifestyle change are incredible and empowering. Thank you, Isabel Lokody, Julie Holmwood 🧞♀️ Holmwood, Pilar Fernandez Hermida, Gowyn G, Swetang Khambhatwala,
and Paul de Gruchy Gaudin,
for sharing your insights.
2. Importance of Local Access and Experience: Time and location are critical in a patient’s situation and severity. World-class clinicians, companion
diagnostics, or curative therapies trialed across the globe can be limited by
eligibility, affordability, access, and turn-around barriers. Medical tourism,
wellness, and recovery present great opportunities for the NHS and its cancer care ecosystem. It starts with willing specialists and clinical trial
navigators engaging with worldwide patients, balancing their time between local patient backlogs and stage-critical patients globally. Thanks, Peter Hall, Chris Teale, Dr Nina Fuller-Shavel, HCA Healthcare UK, Ritesh Patel, David Britton, Massive Bio, and Hazel Dawson, for your valuable insights and
open-minded advice.
3. Real-World Data and Evidence Standards: In the globalised world of healthcare, real-world data (RWD) and evidence standards are paramount. Life-changing tests or therapies face approval and access challenges due to varying safety-efficacy across populations. Procedures like dendritic cell therapy (DCT) are gaining popularity due to fewer side effects and flexible business models. However, clinical guidelines and health economic research are lacking, despite availability across the world. In South Asia, pre-procurement regulatory evidence seems to be a token, with
real-world data (RWD) missing. Aggregating RWD from public and private institutions that is open for research and global partnerships can significantly improve access to clinical studies, evidence local innovative therapies, and speed up access to game-changing innovation worldwide.