Patient’s Voice

Another day, another conference…… another lanyard!!

This one specifically with regard to clinical trials and patient participation.

Today, I had to stop several times during the day and remind myself I was there as a patient and not at work. It was a fine line. I was shouting out in my head at how valuable all this information was to the pharma companies and here I was as a patient but writing notes still as if I was going to feed it back somewhere!!!

Todays conference brought me to Sofitel, St James. London! I always google hotels….. mainly cos I love staying in them!! A night here would set you back about £700 per night!!

I don’t get this!!! I know luxury etc but at the end of the day you are still going to sleep for 8hrs or so. Its not magic that you will get 45 hours sleep or be magically transformed into a model or something!!! I mean there is reasonable and just darn silly!! I really need to see one of these rooms just to see what you get for that kind of money… certainly isn’t brekko as that is extra!! You will come out of there the same as you went in, you still brush your own gnashers with your own toothbrush !!! Anyway, I digress.. you know what I mean. The entrance was amazingly decorated and bathrooms quite stylish……. I’ll give them that.

If I had £700 to spend on a room, I’d stay in a premier inn and give the rest to the homeless!! If I was in the hotel, I would be too economically concious to just go to sleep!!!!

Ok lets get past the hotel room!!! It was too posh for me to take photos so here is the sign outside!!!!!

I get a little buzz arriving in Big London. I do love it but today, a very long day, there was no time to stop and look around! I needed to arrive at 8am for registration.

I was on a panel, the first of 3 panels throughout the day discussing our knowledge and experience in clinical trials…. there were 14 patients from different backgrounds and about 50 others, majority from all different departments in various pharma companies. I was eagerly scanning everyones badges to see who we had so I could name drop !!!!

I was in the first group of 4 patients. My aim was to tell my story. Basically, I never got on the clinical trial as I was not eligible. I was denied. Then denied the drugs and have to pay for them myself. There were shocked faces, it was a story and a half. The pharma companies don’t often hear the patient stories. We are just a number on a clinical report form. Now I feel weird! Patients are just numbers, I didn’t even get to the number stage!!

It was weird hearing from real patients from whom I have been involved in collecting and reviewing data for over 20 years! I mentioned this also, my background and then having to fund treatment! I had a lot of feedback from this during the breaks and lunches! A lot of advice and support. Many were very interested in the story and ongoing challenges.

The panel of 14 was not just cancer patients but a mix of diabetes, stroke, heart attack, migraines!!! One champ had just been on about 24 clinical trials for the money!!! But without volunteers, we would not have trials and therefore no new drugs!!! A very friendly chap!!

This was the room! I didn’t take pics of the stage or me in it as it was just too long a day and I was fretting a bit over how I would make it through but it was so interesting, I was just fine!

I learnt today that besides uber and uber eats, we have uber health for patient transport needs!

I learnt that the patients biggest gripe was never hearing about the trial and its outcomes after it was finished and also not being able to continue on a drug after a trial was complete. After discussions, this issue can easily be resolved by just informing patients upfront of legal limitations. ‘We’ don’t think about the patients interest in the trial after submissions, but simply informing the patient or having the discussion about how clinical trials work can alleviate some of these concerns.

Patients generally never receive a thank you for participating letter.

There were lots of other discussions that went on, virtual participation, home visits etc….. was all very interesting and I ‘enjoyed’ being there today.

I also learnt that ….. for my pharma friends….. ICH 8 will be coming out shortly and one requirement will be that each trial must have patient input into the protocol design.

So some may be able to see why I thought I was at work!!! Fascinating to be part of it all.

I need my own special badge with my name, profession and then patient! This one is just not sufficient!

I came home, stood under a hot shower to warm up my aching bones and threw myself on the sofa for an hour. Gurv took care of dinner and I saved my energy for tomorrow…….. another day !!!

2 thoughts on “Patient’s Voice

  1. Hey Sal

    Avid reader of your blog here! It’s good to hear that there is this kind of thing going on, clinical research can be so silo’d, not enough focus on the ‘patient experience’ though that phrase is so overused. I hope changes happen, but our industry is so slow to respond. When I worked in eCOA there were some companies using that tool to share info with the patients.
    Anyway, must get back to work…


    Liked by 1 person

    1. Hey Sue, I am following closely. Much more work needed so I will do all I can from my end…..
      I will continue to share anything I experience. Thank you for sharing my journey with me x


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