Joining a clinical trial

I have read countless reports of clinical trials but I had never been in one. Until I got an invitation to join one. Last month, I got a letter from the hospital I attend (not the one I work at) along with an appointment letter. I thought it would be interesting to have an inside view of a trial and I contacted the lead researcher. After a phone call assessing eligibility, an appointment was made for me to visit the main hospital for an interview, blood test and covid booster. This took about an hour. What is this trial? It is the BOOST-IC trial. It aims to determine whether an extra covid booster vaccination gives extra protection to people with solid organ transplants (that’s me), blood cancers (like leukaemia), or AIDS. Even though my kidney is now failing (last bloods indicated 12% function), I was still eligible.

After the initial clinic visit, I had to fill out an online form about vaccine side effects, which included taking my temperature every day for 7 days. Then nothing doing until the following month when I will go to one of the hospital pathology clinics to have a blood test. Then some more weeks will go by and I will have another blood test.

At the first appointment, I was asked if I would like a copy of the results when they become available. I demurred, saying that I will look it up and read the RCT. I asked which journal they were considering and they hadn’t decided on one yet. They have a wide choice due to the population they are studying. I also mentioned JANE (Journal Author Name Estimator) and that they could present at numerous conferences (AIDS, various cancer conferences, vaccinations/immunology and renal).

It will be years until I get to read it though!

If you are invited to join a trial or come across one that is recruiting that you are eligible for, I encourage you to join. It’s an interesting project to be involved in.

Cancer is not a battle … or is it?

…. at least, not for me.

Using military metaphors when writing or talking about tackling illnesses goes back at least to the 17thc, if not earlier. A study in 2010 found that patients thought physicians were better communicators when they used metaphors when talking about cancer. Only 22% if the randomly selected conversations used military metaphors – surprisingly (for me at least), most metaphors where agricultural. Dhruv Khullar writes that using military metaphors is highly personal and knowing the patient well helps to determine what to say. Carlos D. Tajer wrote an interesting editorial about metaphors in medicine and delving further, the use of metaphors in communication is more complex than I first thought. They have long lasting effects too, as in his example of Ostler and angina (1910) which has imprinted in cultural memory as – it is men who have heart disease (nevermind that females do equally, or more). Metaphors can lead to damage too, as Trish Greenhalgh in a 2010 BMJ editorial writes.

The people treating me didn’t use military metaphors – in fact, they mostly didn’t use any (the only one I got was radiotherapy = sunburn). Perhaps because I’ve had medical issues before or perhaps because I work in a hospital – who can say?

5 Things I learnt as an inpatient

I have been an inpatient recently. I was in hospital for a little over 2 weeks to have a malignant tumour taken out of my face. As well as being an oncology patient, I was also a plastic surgery patient – muscle was taken from my abdomen to fill the cavity.

While I was an inpatient, I couldn’t help observing things:

• Ward nurses lead very regimented lives at work. Medications, dressings, wound care, and countless other things run to a timetable. There is no time for education. If you want to reach ward nurses, find out what times the handovers are and arrange to have training on the ward or nearby then and there.
• Nurses have to read a certain amount of papers to reach CPD goals. Nurses also always have their mobiles with them and they use them for work. Why not combine them and show them how to find articles via mobile?
• Ward rounds with clinicians seem to go faster and faster these days. When I was an inpatient 20 years ago, they were longer but due to more patients and less time overall, many hospitals have restructured ward rounds. When I started doing them in the the Acute Medical Unit at work, there was more time taken and I was asked questions. Then the restructure occurred and no time was given to an educational component. I felt like a spare wheel so I asked a geriatrician how I could contribute in a meaningful way and was invited to take part in the educational lunchtime meetings.
• Clinicians and other specialists also use mobile phones for lots of things. Did you think the flashlight on your mobile phone was pointless? Not to the ENT and plastic surgeons – they turned them on to look inside my mouth!
• Nurses take a lot of crap from some patients. Have you seen those advertisements recently about violence towards healthcare staff? When I was an inpatient, an incident occurred that could have gotten scary. A patient was being more than obstreperous and dragging himself around the corridors. After things had calmed down, I asked the nurses on night duty if they were OK. They looked pleased that I asked. Why not do something nice for your nurses today?

These are little learnings I took on board. I am at home now and undergoing radiotherapy every weekday until August 11.  I look forward to doing some more blog posts before I return to work.