Monday Media: Episode 1, 15th October 2018

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
Fiona Godlee is Editor-in-Chief of the BMJ, she’s a qualified doctor and hugely intelligent and inspirational woman. I’ve seen her speak a few times, and each time I’ve been left feeling galvanised to do something to help solve the problems

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.

8 Reasons You Should Take Part in a Clinical Trial

I originally wrote this post for the What Culture website when they were first launching the Science section of the website, but I wanted to post it here so that I have it on my own blog too.


Clinical trial participation – probably the easiest way of changing the world.

Clinical trials are a critical part of scientific research; they allow us to make sure new products and devices to manage, prevent, treat or detect disease are beneficial and safe for human use.

Thousands of clinical trials are completed every year spanning hundreds of countries around the world. The results of these trials allow governments to make decisions on health budgets, and doctors to make decisions on which drug or device is best for their patients. Patients can also use the results of clinical trials to make choices about their own healthcare plan. Trials may test drugs or combinations of drugs, surgical procedures or devices, ways to screen patients for diagnosis, and care procedures. Each and every clinical trial requires human participants to take part in the study in order to test these new medicines and procedures, but it’s very difficult to find people to sign up. Trials can be abandoned if enough people don’t sign up to participate, and if that happens then answers to the research question the trial aimed to answer will remain a mystery.

Trials are hugely important to human health and disease; without them we would be unable to move science forward, and ultimately we would be unable to save lives. Why should you be the one to sign up for a trial though, is there any way you can benefit from taking part in a clinical trial? Read on to find out my top 8 reasons to say ‘yes’ to trial participation!

1. It’s a brilliant excuse

Have you had a really busy week at work? Don’t fancy that big night out you’ve got planned and need a decent excuse so your pals will get off your back? They can’t exactly try and twist your arm if you declare you must remain sofa-bound because science said so.

Try, “I’m taking part in a potentially world-changing clinical trial and I must refrain from intense movement (e.g. throwing your usual wild shapes on the dancefloor) and drinking alcohol in excess (e.g. the inevitable 3am jagers you’re known for).”

Other excellent uses for taking part in a trial as an excuse include:

  • Getting out of jobs your partner’s been nagging you about for months (No it’s definitely not ok for you to be doing DIY or unblocking the drains or really anything – much too strenuous)
  • Doing extra stuff outside of work (You can’t possibly stay late, you have a clinic visit to attend)
  • Jury duty (You’re trying to cure cancer and they want you to sit and listen to a minor theft case for 4 days? Nae chance)
2. You can make money!

Each clinical trial is different, and your level of involvement will depend on the type of study, what disease the researcher is working on, and the type of intervention you receive – for example, surgical procedures will take longer than giving you a new type of pill to swallow.

Some trials require very little input from you; you may need to keep a food diary or pop in to see a nurse once every few months. For trials like this where you’re not inconvenienced too much you might get a little treat, a notebook or a few pounds to get yourself a coffee on the way out of the hospital.

For other trials though participants are required to be much more involved; these more intense types of trial can require you to stay in hospital for a few days at a time, attend multiple clinic visits or change the way you live day-to-day. These types of study often pay you a higher sum of money as researchers realise you may need to take time off from work or university. These high paying trials are very popular with unemployed people and students looking to make some extra money.

I will say however, taking part in a trial should not be a decision you take lightly – money is a benefit, not a motivator!

3. You’ll help researchers sleep at night

Trials may test drugs or combinations of drugs, surgical procedures or devices, ways to screen patients for diagnosis, and care procedures. Each and every clinical trial requires human participants to take part in the study in order to test these new medicines and procedures, but it’s very difficult to find people to sign up.

In practical terms, not recruiting enough participants is a Very Bad thing for science. In the very worst cases trials can be abandoned if enough people don’t sign up to participate, and if that happens then answers to the research question the trial aimed to answer will remain a mystery.

Thankfully trial abandonment is rare. In more common cases though, researchers manage to recruit between 60 and 80% of the people they’d hoped to – you’re thinking that’s not so bad, right? It’s not good, that’s for sure; without the target number of participants, the results of a study could actually give us incorrect information. Designing and managing a clinical trial is hard work; there are multiple areas where the study could miss targets and exceed budgets. Recruitment is the most common pitfall; getting you guys involved in their trials is the one thing that keeps researchers awake at night.

Take part in a clinical trial and reduce stress levels of a researcher immeasurably – their families will thank you for it.

4. To find out about your own health

If you’re one of those lucky people who is rarely ill, finding out stuff about your own health can super interesting.

Maybe you’re interested to know what your blood type is; a trial that involves taking a blood sample from participants (a super common thing for trials to ask from their participants) will tell you that, and help advance research at the same time.

Other research can give you more detailed information about your own health. For example trials focussing on genetics often ask to carry out a genetic screen on their participants; this is usually a simple process either using a blood sample or a cheek swab. You could find out if you’re at a high risk of obesity, which could help you turn down that slice of cheesecake you had your eye on for after dinner.

In other cases, trials like this may require more thought before taking part; you could find out you’re more at risk of cancer or neurodegenerative diseases like Alzheimer’s, all from giving a blood sample to a research study. It’s important to note here that genetic trials often offer counselling as well, finding out you are at risk of a certain disease can come as a shock – but it does allow you to implement lifestyle changes and hopefully reduce your risk over time.
5. To improve our NHS

We have all seen shocking headlines about how stretched the NHS budget is, and how likely it is to be stretched further as the UK population ages. Clinical research gives us the opportunity to make the medicines that are paid for by the NHS, and the healthcare procedures we use, more efficient. If we can learn how to make the NHS more efficient, the budget will go much further; magic!

For example, there are lots of different treatments available for diabetes – a growing problem in our society. Which one of these treatments works best though? Trials can answer that question for us. This doesn’t mean we’d stop giving out every other treatment though; each patient is different and certain drugs may work better for some people than others.

What we’d be able to do as a result of a trial like this, is find out which types of people are more likely to benefit from each treatment. Then we would be able to match people up with treatments that are more likely to work more quickly. By preventing the use of trial and error, patients would benefit as their disease would be under control more quickly, and we’d be cutting out waste to free up funds for areas of the health service – everyone’s a winner.

6. To help others

For those of us who are lucky enough to be in good health, we tend to take it for granted until the day we wake up sick. We then promise ourselves we’ll actively appreciate being well again. If you’re lucky enough to never wake up sick, there’s no doubt that you’ll experience someone close to you being given difficult news about their health. I can assure you that this will bring you swiftly back down to Earth.

As a healthy volunteer, clinical trials can give you the opportunity to help others. Healthy volunteers are often the group of people researchers find most difficult to bring in to their trials, mostly because when we’re healthy the problem of poor health seems like a distant problem that we’ll deal with if and when it happens to us. New drugs are tested in healthy people before people suffering from the target disease, this allows researchers to double check that the drug is safe. Without healthy volunteers trials would not be able to run.

So when someone close to you is unfortunate enough to receive an unwelcome diagnosis, don’t spend your time being angry at the world and frustrated because life just doesn’t seem fair; think about signing up to take part in a trial.

7. To take control of your own health

When people are given the news that they have a potentially life threatening disease they go through a mixture of emotions. In some cases they may feel helpless, they may ask ‘why me?’ and be frustrated over their perceived lack of control. Taking part in a clinical trial offers one option of regaining that control.

Being a trial participant does not guarantee that you’re going to be given a new or experimental treatment though – patients are randomly assigned to groups in a trial, so you may end up in the placebo group. A trial can still benefit you as you will be more closely monitored than you would throughout standard care.

Signing up for a clinical trial is not a decision that should be taken lightly; it’s a big decision to make and something that isn’t right for everyone. For others though, they can feel empowered by being a participant in a trial. 1 in 6 cancer patients takes part in a clinical trial in the UK each year, a figure that’s raised from 1 in 26 a decade ago. When asked why they decided to take part in a trial, the majority responded that they wanted to feel in control of their own healthcare, and a trial gave them that opportunity.

8. To advance science

Science is an industry full of unanswered questions, many of which can be answered by completing a clinical trial.

An example of a clinical trial may involve randomly assigning people to 2 groups; giving one group of people a drug you think might prevent heart disease each day, and giving the other group of people a placebo (in this case something that looks like a the drug but which has no effect). The result of the trial will give you information on whether that drug prevents heart disease or not. Other trials may not use placebos at all; in this example one group of people could be given the test drug, and the other group a drug which we already know prevents heart disease. Trials with this sort of design can prevent waste and help science and medical treatments advance – if the test drug prevented heart disease more effectively we could start using that instead of the one already in use.

Isn’t that cool? You could help to answer a huge and important scientific question, and you don’t even have to work in a lab.

Inspiring People: Margaret McCartney

Margaret McCartney

A few months ago I decided to start a series of blog posts called ‘Inspiring People’. The idea was triggered by the death of Doug Altman; I wanted to tell you about the people that inspire me. Some of them will be researchers, some clinicians, some artists, some patients, and everything in between – hopefully the blog posts will give you an idea of how I approach the research that I do, where I get inspiration from, and who I respect and admire. You might even find a few new sources of inspiration for yourself too!

Today’s inspiring person is Dr Margaret McCartney; she’s a GP based in Glasgow, former columnist for the British Medical Journal, broadcaster for Radio 4’s Inside Health programme, and a fierce advocate for the NHS. She’s also the author of various books focussing on patient health and the NHS – including The Patient Paradox that I’ve read and recommended here.

Why does Margaret McCartney inspire me?

In the post about Doug Altman I talked about the first conference presentation I gave, and how Doug’s laughter and encouragement from the audience settled my nerves. At that same conference, I saw Margaret McCartney speak for the first time. Her presentation was absolutely brilliant. She talked about death, about how we as a society need to accept the inevitability of death, and how we should be working to make death a more dignified process rather than working to keep people alive at any cost. It’s weird to think that listening to Margaret’s talk caused me to really think about death for the first time; we will all die, we have all known someone who has died, and yet we avoid the subject. I left that talk feeling inspired, humbled, and ready to buy every book Margaret has ever written.

Aside from the fact that she talks about really important, and often taboo, subjects, she talks about them in an accessible way – it’s a no holds barred approach, provocative without being actively confrontational. Listening to her, you can tell that she doesn’t take any shit, but she is so honest, intelligent and eloquent, that it’s difficult to pick any holes in her argument.

The video below is one of Margaret’s fantastic talks – this one from 2014 at the Centre for Evidence Based Medicine at the University of Oxford. In this talk she’s discussing screening tests and how the process of having a screening test should not be something that patients go into without knowledge – screening tests have implications and therefore need thought and consideration before the decision to have one (or not) is made. People need to have information available to them in order for them to make the decisions that are right for them.

Find out more

If you’d like to find out more about Margaret McCartney’s work, I’d recommend starting with the sources below:

Margaret McCartney’s blog, her Twitter, and her books

Articles from the BMJ:
Medicine must do better on gender
A new era of consumerist private GP services
If you don’t pay for it you are the product
Can we now talk openly about the risks of screening?
If screening is worth doing, it’s worth doing well
The NHS shouldn’t have to pick up the bill for private screening tests
Hiding and seeking doctors’ conflicts of interest
We need another vote

If you only have time to read one thing, make it this:
A summary of four and a half years of columns in one column

As a researcher, I appreciate her brutal honesty; as a patient, I appreciate her ability to communicate; and as a tax payer, I appreciate her constant push for transparency in the way that our healthcare system is funded, skewed and tainted by industry influence and political games.