Why I became a research volunteer

The infamous clinical trial involving the experimental leukaemia drug theralizumab received worldwide media coverage - and not in a good way. It changed regulatory authorities’ approval systems and the ways in which human clinical trials are conducted. I remember watching the BBC documentary The Drug Trial: Emergency At The Hospital and thinking that I would never volunteer to jeopardise my health, no matter the cause. At this point, I had not lived through a global pandemic, when there was a desperate need to test a vaccine’s safety and efficacy on healthy volunteers for the sake of the world’s public health. In any case, in June 2020, I signed up to be on the Imperial College London Clinical Research Facility’s healthy volunteer database.¹

In September 2020 I received an email to say my profile had been matched - not to a COVID-19 vaccine study, but a phase 1 trial for an ocular chlamydia vaccine. Though not as seemingly urgent, chlamydia is the most common bacterial sexually transmitted infection (STI) worldwide and can cause infertility and eye diseases. I signed up, and was excited to be involved. This was just as the Delta variant was beginning to sweep through the UK and fresh restrictions were being introduced, so the prospect of having a purpose to leave the house was welcome.

 October 2020 I went to an initial screening visit to check my eligibility. I was introduced to a few nurses and doctors, all of whom would be consistently and continuously present during the 11 follow-up visits - a friendly and calming fact that made those visits more catch-up than clinical. After signing the patient information sheets, I was officially one of 66 participants in the trial and would spend the next 9 months trooping back and forth to the Hammersmith hospital. As I was kindly granted the time off as sick leave by my employer, I skipped the 45 minute tube journey and used the time as an opportunity to run or cycle the 9km from my flat to White City. Maintaining good health would be important, I thought, if I am to put myself at some risk of harm - I still hadn’t forgotten about theralizumab.

Every appointment started the same: a pregnancy test, between 10 and 15 mini tubes of bloods, and Schirmer's test - a somewhat uncomfortable procedure where filter papers are hooked inside the lower eyelids and you have to cry into them for 5 minutes with your eyes closed. The time passed surprisingly quickly and was a good opportunity for my lockdown meditation practice to be put to use. Though this could all be quite uncomfortable at times, the nurses and doctors were all incredibly kind, even when I did silly things like not drink enough water, run 9 km to the hospital, then faint at blood tube number 2 (I’m ashamed to say this happened more than once).

Double-blinded, neither I nor the doctors and nurses involved knew whether I was given the vaccine or the placebo, and nor will we ever know. Though curious, I embrace the unknown; if I found out I’d had the placebo all along, it means after all those visits I’m not even immunised against one less of the thousands of global diseases, and makes the whole story significantly less heroic. But someone has to take the placebo, as well as the drug or vaccine, and it’s a rare opportunity to do something that has the potential to impact thousands, perhaps millions, of lives.

If you sign up to the volunteer register, you will be contacted if your profile matches a study - you can, of course, make the choice about whether you can participate. If you’re a perfect candidate, be warned that it could be hard to refuse the opportunity to be so selfless and noble - I know I couldn’t. Though there were ups and downs, I’d do it again; and I’d encourage you to try it for yourself.

References

 https://www.imperial.ac.uk/nihr-crf/ppi/volunteer/

I remember watching the BBC news call to action to get more BAME individuals to volunteer and help put an end to COVID19. Having seen family members and friends believing a lot of the misinformation on the internet, I was eager to set an example that you don’t need to fully understand the science that props up (and often, progresses elements of) our society, but you do have to trust it. I wanted to help bring them on the journey with me to show how safe, open and transparent the process was in the hope that it would inspire them to listen and act on the advice of the experts.

Since joining the trial, every nurse, doctor and receptionist I have encountered has been kind, open and completely understanding of my questions and at times, nervousness! And I would absolutely say to anyone thinking of volunteering to be sure to ask any and all the questions you have, as even if they don’t have an answer for you straight away they can always find it. I’d also say make sure you have a close friend or family member who understands and supports you throughout the process, as sometimes it can help to talk through the contracts and options available with someone you’re close to. 

Personally I did have some interesting side effects after my first dose of the vaccine, but I called the centre and was reassured entirely. I also had a very supportive workplace who gave me the day off to just rest and monitor my reaction which disappeared after one day. Despite this, I would still encourage anyone who might be thinking about supporting an NHS trial to do so. The staff you meet are all brilliant, kind, diverse and intelligent individuals. They’ll make every effort to ensure you’re comfortable and entirely knowledgeable of the processes and procedures. Finally, there is a really positive feeling, knowing that you’re part of shaping history and hopefully saving some lives too, by only sacrificing a few hours of your time, and putting your faith in the the heroes that will see us out of this pandemic.

I am Sunil Neela working for an IT company as an Associate Director – IT Projects.

When we were more than 10 months into the pandemic with no light of normal life nearby and a high rise of cases and hospitalizations in UK. Everyone, especially the NHS Doctors and Nurses, were doing their best and everyone was looking for a vaccine as the only option. I came to know volunteers were needed, so took this opportunity to give back to the society I live in (UK), the country which gave me the most (USA) and My Country (India). I opted to volunteer for the Johnson and Johnson Covid-19 Vaccine trial, to help and support our system and scientists/doctors who are working hard to fix this issue of Covid-19.

I am part of IT and work for Life Sciences clients, so I know how clinical trials work and am enjoying my presence as part of this important trial which may help the world to come back to normal.

Working with Imperial College Healthcare NHS Trust is a unique and very good experience. They explained all the pros and cons in detail before and helped me to clearly understand my role and responsibilities, this gave me the confidence to participate in this clinical trial.

My first visit to Imperial Collage NHS Trust took some additional time as we had to go through the processes and protocol, but all my follow up calls were on time with the same smile and support from the IMHR team of doctors and nurses.

Doctors and Nurses have cross-checked every small detail twice before they gave me the trial vaccine (blinded), this was one of the best things I came across.

It was a great experience participating in this important clinical trial and I am confident that this is going to benefit the whole world. I would suggest more participants with different ethnical backgrounds participate and help our scientists and doctors to end this pandemic at the earliest.

Finally I am happy to be a small part of this big process across the globe to help our near and dear, friends, colleagues and all of us to live like a  “Vasudhaiva Kutumbakam " and back to normal life in the coming days with the success of this clinical trial.

Having previously had all my information only from news channels and seeing that my lifestyle remained unaltered, I was blissfully unaware that even though I was fit and a regular gym goer, I could easily catch the dreaded Covid virus and regardless of the state of my health, it could be fatal.  The message was driven home to me when the first lockdown was announced, and my gym shut.  The daily news conferences held by various senior politicians setting out the grim statistics about the numbers being infected, hospitalised and indeed dying put any complacency I had well behind me.  I was particularly taken aback by the number of ethnic minority members of the population succumbing to the dreaded virus.

In particular, I was taken aback by the death of Dr Riyat, a Sikh Consultant in the A & E Section of Derby Hospital. At 52, the good doctor was 17 years younger than I was.   I was also deeply affected by the deaths of Norman Hunter an ace footballer of yesteryear who had a reputation of being a big, strong no-nonsense footballer with Leeds United and Tim Brook-Taylor one of my favourite comedians. 

Dreadful pictures formed in my mind about people suffering at the end of their lives and not even having the comfort of their nearest and dearest being with them at the time of death.  The misery for the families continued after death as there were no funeral services and no 'wakes'.  The survivors couldn't get any support from friends and relatives due to lockdown.

I then started taking all the precautions advised by the medical profession through the politicians (face masks, social distancing, sanitising etc) and thanked my lucky stars that I hadn't caught the virus myself notwithstanding that I had been attending the gym regularly and encountering possible carriers of the virus.  I also assessed my own life and saw that I was single and as such I didn't have any dependents.  Thus, if I was to be infected and pass away, my siblings would be filled with sadness but financially, there wouldn't be any consequences.  So, I decided that I should do something.  Volunteering for trials as an ethnic minority person would not only help the researchers but also help me in that my health would be monitored.  Thus, the risk I faced was minor, but the benefits would be manifold.  Hence, I volunteered.

The most enjoyable part of the trial was the pleasantness of the staff, including the doctors, the nurses, the medical technicians and even the reception staff.  It was like visiting my own surgery and having a medical, including measuring blood pressure, temperature and carrying out a blood test.  I was given a vaccine and was monitored for any adverse reaction before I was allowed to leave.  The technician had in the meantime ensured that an 'app' I had downloaded was working and it was through the app that I sent regular reports about the state of my health. A telephone consultation was also held after the stated interval.

The follow up appointment was just as good and the procedures largely a repetition of the first visit including the administration of the second vaccine.

My experience has been that I was dealing with a thoroughly professional set-up with wonderful staff and made to feel good that I was participating in research that could help millions throughout the world.

I would encourage people to volunteer. It is virtually risk-free and in the event of any adverse effect arising, there are protocols in place to control matters.  The benefits far outweigh the risks.