I’ve talked before on this blog about how I do some freelance writing projects along side my full time job, and today I want to start a new series of blog posts that originate from a conversation I had with a client a while ago. One of the regular projects that I work on is a weekly recap of news; every single week (through thesis write up and everything!), I write a news recap piece for Synthego. Synthego are based in Silicon Valley, and they have a product portfolio spanning software and synthetic RNA kits that are designed to support scientists and researchers with CRISPR gene editing processes. I’ve worked with Synthego for over 2 years now, and this little recap of news has become a normal part of my week. I find these types of posts really interesting to write even though I don’t work in a lab or have anything to do with CRISPR or gene editing day-to-day, so I figured it might be good to make a little news recap of my own each week.
I’m not sure if this will be a weekly thing just yet (let’s see if anyone actually reads it first…), but I’m going to use these posts to highlight new research, interesting articles and other forms of media (blog posts, podcasts, YouTube videos etc) that are related to things I find interesting – primarily trials and trial methods, but likely a bit of public engagement/involvement and research integrity thrown in there too.
So, here goes! Let me know what you think and whether you’d like to see these types of posts become a regular thing on the blog.
Research Paper: The effect of optimised patient information materials on recruitment in a lung cancer screening trial: an embedded recruitment trial
Full disclaimer on this one – I know some of the team behind this paper; one of them was (I just had to go back and delete the word ‘is’, it’s still very strange to not be a PhD student anymore) my PhD supervisor, and I’ve been lucky enough to work with a few of them on other projects too. Even so, it’s still interesting and it’s still useful.
This study focusses on the content of participant information leaflets; these are the leaflets that people are given when they are approached to take part in a trial, it should contain all the information they need to make a decision about trial participation, and it should be presented in a format that is accessible and easy to digest. In reality, a lot of participant information leaflets are super long, very text-heavy, and often make people (myself included) groan just thinking about reading them. The team behind this study designed and conducted an embedded study (also called SWATs or studies within trials – I mentioned them in a previous blog post here), looking at participant information leaflets used within a host trial that aimed to assess the effectiveness of a new test in reducing the incidence of patients with late-stage lung cancer at diagnosis compared with standard care. Potential participants approached for participation in the host trial were randomised to receive the original participant information leaflet and accompanying letter (control group) or optimised versions of these materials which had undergone user testing and a process of re-writing, re-organisation and professional graphic design (intervention group). The primary outcome was the number of patients recruited to the host trial, and the secondary outcome was the proportion of patients expressing an interest in participating in the host trial (just a note – I’ll be doing a post all about outcomes soon as that’s what my next research project will focus on, keep an eye out for it over the coming months!).
The results of this embedded study suggest that optimised patient information materials made little difference to the proportion of patients positively responding to a trial invitation or to the proportion subsequently randomised to the host trial. I’m interested as to why this is – personally I think it’s something to do with the verbal information that potential participants get alongside these leaflets, but I guess that’s a question for a future study! Read the full paper here.
Research paper: Global public attitudes about clinical research and patient experiences with clinical trials
A new study published in JAMA from researchers at The Center for Information and Study on Clinical Research Participation in Boston, Massachusetts, caught my eye this week. The team surveyed 12,427 people in 2017 about their attitudes and understanding of clinical research, these individuals represented 68 countries and included 2,194 clinical trial participants.
The survey found that 84.5% of respondents perceived clinical research to be very important to the discovery and development of new medicines, but 59% were unable to name a place where studies were conducted. 90% believed that clinical research is generally safe, but 44.9% reported that clinical trials are rarely considered as an option when discussion treatments or medications with their physician. Perhaps unsurprisingly, clinical trial participation was perceived as inconvenient and burdensome; 49% of respondents expressed that their clinical trial participation disrupted their daily routine.
Clearly, there is a lot of work to be done in terms of normalising trial participation, and improving trial design to minimise burden and/or disruption for participants. Read the full paper here.
Webinar: Health Care Improvement Scotland’s QI Connect Global WebEx Series presents ‘Too much medicine… winding back the harms of medical excess’ with Fiona Godlee
she’s highlighted. She’s spoken at length about the harms of having ‘too much medicine’, and whilst at the BMJ she’s been heavily involved in their Too Much Medicine campaign. This webinar promises to be an interesting look at the problem of medical excess, and hopefully some ideas on how we can prevent the continuation of over-medicalisation.
This webinar takes place on October 31st 4-5pm (UK time), and you can register for free here.
Opinion: How to fulfil China’s potential for carrying out clinical trials
Some researchers believe that China has the potential to become one of the world’s most favoured sites for performing clinical trials. Largely, this is because China is home to ~20% of the world’s population, as well as a pattern of morbidity and mortality that is increasingly similar to Western countries – it has been suggested that doing trials in China could solve the recruitment issues we see so often in trials conducted elsewhere. Currently, China has 32 national centres for clinical medicine research, and has formed a collaborative innovation network of more than 2100 medical institutions in 260 cities. Another attraction is that – for the time being at least – trials conducted in China cost half or less compared to those conducted in Europe and North America because it has larger numbers of medical staff and a lower cost base.
That said, moving all trials to China isn’t a viable option right now; the country’s trial experience is very much in its infancy, and it’s important that we ensure that trials are of a high quality. This article published in the BMJ provides some initial ideas of how the wider trials community can help to ensure that China is able to fulfil its potential for carrying out high quality clinical trials.