A whirlwind of PPI to get Covid-19 trials off the ground
Blog by Hina Pandya
This time of coronavirus pandemic has been an unusual situation for all of us.Like many people I found that a lot of my regular workload had disappeared overnight. So, when Rosamund Yu, Head of PPI and Research Communications, emailed to ask if I would join a panel for the research work at UCLH on Covid-19 trials as a public contributor, I couldn’t refuse.
“I’m not a Doctor but,” starts many a sentence before offering unsolicited advice. So, to do this properly I had to have some foundation of knowledge. I enrolled on the online course “Covid-19; Tackling the Novel Coronavirus” by London School of Hygiene & Tropical Medicine and UK Public Health Rapid Support Team. It explained the global effort and sharing of information, fundamentals of the genome structure and the now notorious R value!
Good preparation then for reading incredibly complicated research protocols, and giving detailed and helpful feedback to the researchers, some of whom were on wards during the day, and then came to do work on the studies to develop these quite possibly life-changing drug trials.
Our panel began on Zoom with COO, Dr Nick McNally. He made time to explain the impressive number of projects that had already begun and spoke with pride of specialist staff stepping forward to help. I had joined good company.
The work came thick and fast- weekly meetings, additional protocols to review swiftly - 70+ pages long, complete with rationale and explanations of dispensing new therapies. The considerations were immense; possible side effects versus benefits, possibility of death from the drugs or complications, pressure on health care services after trial treatments, data privacy issues, how best to ask for consent, and new immunomodulatory therapies - understanding what they were and how effective could it be. Subsequently, the ethics of a study, for example if a pharma company were to fund the study should the patients participating be paid, especially if the study required very personal life choices from them or data which would be held for decades. All of which demanded more study and research for me.
As a panel we worked efficiently in those intense weeks, pooling and sharing our fundamental feelings on whether studies should be approved, how much patient uptake it might result, and on the careful consideration the researchers had given for a patient’s follow-up process. That said we didn’t always agree of course, from a group with differing ages, backgrounds, experience and perspectives- just like the patients - enforcing for me, the real need for diverse representation. For PPI to be worthwhile it requires not only the engagement of senior staff and the sharing of confidential proposals, but for participants to speak up for many others. It’s a responsibility.
The law currently removed the ability for patients to opt-out of having their health data collected until a review. So as a panel we took data privacy particularly seriously. Thankfully so do the clinicians and researchers. I was involved in a data-pooling project that is pure NHS innovation, NHS owned, committed to transparency. The creative, scientific minds in this project have developed ground-breaking tools in the fight against the coronavirus, utilising data for the future of medicine, diagnostics and treatment. It’s heartening and impressive to see a long overdue, exciting dynamic to our NHS services as we know them.
In all, it has been a steep, highly enjoyable learning curve, contributing to combatting the virus, enabling the medics to have the best possible ways to communicate their studies, and to get the best ones approved helping as many Covid19 patients as possible.
I’m no Doctor, but I hope I’ve helped.
Hina Pandya is a public contributor to research at UCLH and works on innovation strategy, tech and publishing
