Prioritising the Research Agenda for Trial Retention – Birmingham, 23rd October 2018

I’ve been in Birmingham today for the final consensus meeting of the PRioRiTy II project, so I thought I’d write a quick blog post before dinner so that you can find out a bit more about the process of research prioritisation.

Image credit: Prof Shaun Treweek

I’ve spoken on this blog before about the first PRioRiTy project, which was a prioritisation of questions around trial recruitment. That project took the same shape, though I’ve been more heavily involved in PRioRiTy II because it’s led by Dr Katie Gillies, who was one of my PhD supervisors; she’s now one of my line managers and she’s fantastic to work with. Katie was a participant in the consensus meeting for PRioRiTy, and as soon as she came back from that meeting (almost 2 years ago!), she set to work on PRioRiTy II – she moves fast because she is a complete trial methods nerd, just like me (I’ve found my people!).

So, I said she moves fast, but you might ask why it’s taken 2 years to get here. As with anything in research the process is not as simple as it looks. This prioritisation exercise was not simply a group of people getting together in a room today and deciding what we thought was most important; the process has involved many, many more people than just those in the room, and is based on the method that the James Lind Alliance (JLA) use for priority setting partnerships. The JLA method is designed to take into account the views and opinions of all stakeholders that have an interest in a specific research area. For us, that meant: trialists, methodologists, ethics committee members, researchers, patients, funders, clinicians and more, but the JLA method has been used for lots of prioritisation activities and the people involved are tailored each time to fit with the aims of the project.

We had a wonderful graphic illustrator with us today, and she captured the ‘story so far’ brilliantly in the image below. Before today we had a survey, followed by a huge amount of data analysis and question searching within the responses from that initial survey, an interim prioritisation process (some of you might have been involved with this because I posted about it here), and then came this face to face consensus meeting – so today was the culmination of a lot of views, opinions, time and effort.

A snapshot of a graphic illustration from the PRioRiTy II consensus meeting showing the story so far.

Below are a few photographs from the day – lots of serious faces, extensive discussion, and some compromises needing to be made too.

The kick off – Katherine Cowan (Senior Advisor to the JLA) did an excellent job chairing the workshop, keeping us all to time and making sure that everyone’s voice was heard within the discussions.

Image credit: Prof Shaun Treweek

In the first session of group work attendees shared their 3 most and 3 least important questions from the list of 21 that we had supplied them with in advance. From the initial survey responses we had 27 questions, which were then narrowed down to 21 questions during the interim prioritisation.

The second session of group work saw the beginning of the ranking process! Coloured tablecloths were used to distinguish questions that were most important (green), least important (red), and somewhere in the middle (yellow). This allowed participants to discuss the ranking of their group as a whole (i.e. based on the feedback from the first group session), and then physically move the questions into a more defined ranking position after discussion.

The final session – questions were laid on the floor so that the entire group could see the ranking. Katherine then went through each question in turn to ensure that the group could reach a consensus; harder than you might think!

Image credit: Trial Forge

We won’t be sharing the top 10 questions around trial retention just yet though; tomorrow we have our final Steering Group meeting (let me know if you’d like to see a blog post about what a Steering Group does within a research project!) where we will go through the top 20 questions and make sure that all the wording is clear.

We then plan on unveiling the top 10 at the Society of Clinical Trials meeting in New Orleans next May. If you’ve been reading the blog for a while you might remember that I went to the Society for Clinical Trials meeting earlier this year when it was in Portland. It’s a brilliant conference that enables trialists from around the world to meet each year to share their work. After that we also plan to do some more conference dissemination at the International Clinical Trials Methodology conference, which takes place in Brighton next October. Keep an eye out for future blog posts too – I’ll be posting the final top 10 when they’re released!

Image credit: Prof Jane Daniels
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Publication Explainer: Trial Forge Guidance 1: what is a Study Within A Trial (SWAT)?

This is the third in my ‘Publication Explainer’ series, read the first and second here and here. As I have said previously, these explainers are a place for me to answer some of the most common questions I’ve been asked by the people around me (usually my boyfriend, friends, or colleagues that haven’t been involved with the project).

This post focusses on the paper below: Trial Forge Guidance 1: what is a Study Within A Trial (SWAT)? Read the full paper here.

What is a SWAT?

A SWAT is a Study Within A Trial – i.e. a self-contained research study that is taking place within a clinical trial. Usually SWATs focus on a methodological aspect of a trial, e.g. evaluation of: an intervention that is designed to improve the recruitment of participants to trials; an intervention that is designed to keep participants engaged with the trial (i.e. retention of participants); or an intervention that is designed to find out more about the way that data is collected (e.g. online versus paper). Often

Why are you trying to encourage people to do SWATs?

It is important that we encourage people to do SWATs because they are so often underpowered. Statisticians can calculate the sample size needed for the results to enable us to see a difference between the two interventions; if we hit that target sample size (i.e. recruit enough participants) then the result is less likely to be down to pure chance. As sample size calculations are done for the host trial, and not the SWAT, it’s likely that the SWAT will be ‘underpowered’ – meaning that the effect that we see in the results may not be a real effect; it could be down to chance. That’s ok though, because SWATs are designed to enable the data from them to be pooled with the same SWATs that have been done in other host studies.

What are you aiming to do in this paper?

This paper is the result of a huge amount of discussion, much of which started at a face to face event that was held in Aberdeen last year, the group of authors on this papers is pretty big, and that reflects everyone that took part in that event and the discussions that came after it. As a group, we are very conscious that SWATs are one of the most obvious (and arguably, easiest) ways for us to improve the way that trials are designed and conducted; so it’s important that we encourage people to do them. It is not realistic to think that trial methodologists can do all of the SWATs that we need; there just isn’t enough of us, and we need trialists to help us. By writing and publishing this piece of guidance, we aimed to produce a one-stop paper where people could go to find out what a SWAT is easily.

Within the last few days, we’ve submitted ‘Trial Forge Guidance 2: How to decide if a further Study Within A Trial (SWAT) is needed’ to the same journal, Trials. Trials journal is currently taking part in a pilot along with a number of other journals that fall under the BioMed Central umbrella, when authors submit their papers for publication they have the option of publishing a pre-print of their work. This pre-print edition is published online within about a week, meaning that the peer review process can run along side, but the research is being disseminated more more quickly. Once that pre-print is available, I’ll share it on the blog so you can read that too 🙂

From PhD Student to Research Assistant

Hoorah, hoorah! It’s officially the first day of #Blogtober!

In this post I wanted to answer a question that I’ve been asked by a few people; what’s it like to go from being a PhD student to working in a full time Research Assistant role? How do you secure a new role, are there similarities, differences, details on if and how my work/life balance has changed, how has the transition been generally etc. It’s a pretty long and wordy post, but I hope it gives those of you that are interested a little snapshot of what post-PhD life is like.

So, a bit of background for those that aren’t aware..

My PhD funding officially ended on Saturday 30th June 2018, which meant I was aiming for a hand in on Friday 29th at the very latest. I ended up submitting my thesis a few days early on Wednesday 27th and then took a few days off to recover. During the month of June whilst I was finishing my thesis, I was also working part time as a Research Assistant at HSRU – the same department where I was based for my PhD.

About a year before I submitted I started having conversations with my supervisors about what might happen after the PhD. At the time, that felt very early, a bit panic-inducing, and like everything was far off anyway. As expected, my supervisors were absolutely right to start talking about things early; time went much faster than I  anticipated it would, and the world of funding in academia is often so slow that you need to start preparing applications etc a year before you can expect to get the funding through (and that’s if you get the funding at all!).
Anyway, we started to work up a grant application to the CSO (Chief Scientist Office), which is part of the Scottish Government Health Directorates. This is the funding body that part-funds that Unit that I work in, and also funded my first grant which covered the qualitative and user-testing parts of my PhD project. My experience with them has always been really positive, so I was happy that they were going to be our target for post-PhD funding – but even so, I wasn’t massively confident that we’d get the grant. I thought the project was good (obviously..), but sometimes you just don’t know with grant applications; it depends who you’re up against and what the panel reviewing applications are looking for on the day. Anyway, we knew that whatever the outcome was, the funding wouldn’t start until the beginning of 2019 so I was still on the hunt for something to fill my time (and pay my rent..) from July 2018 (at this point I hadn’t yet found out about the outcome of my Winston Churchill Memorial Trust Fellowship application).

A few months later (around February time) one of my supervisors was advertising for a Research Assistant. It was only 6 month contract but by this point I had just found out that I’d got the WCMT Fellowship, and would need to slot in my travel time (I know, such a hard life..) which would require 7 weeks away from whatever I was doing, so it sounded perfect. I interviewed for the RA role, and just hoped and hoped and hoped that I’d got it. About a week later I found out I’d got the job and the relief was unreal. This meant that I would do the role part time in June, and then go full time from July to December before leaving for my WCMT travels. It all worked out perfectly.

The timings had all worked out so that I left work one day as a PhD student, and then returned as a Research Assistant; it was all pretty seamless. I moved desks in an afternoon between meetings, and kept on doing whatever was on my never ending to do list (that’s not me boasting about how busy I am, I use a to do list that by design, never ends, to keep track of tasks I need to get to). I didn’t really give my head any time to adjust to my new role, and looking back now, I wish I had.

The role itself means I’m working across lots of different projects:

  • The PRioRiTy II project – a project I’m pretty comfortable with because I was involved (in a minor role!) in the PRioRiTy I project
  • The ImproveHD project – this looks at how we can improve care delivery for people with Huntington’s Disease; something that is completely new to me
  • ELICIT – a project I’m really excited to be involved with, that’s based in trial methodology and links with participant recruitment (the topic of my PhD thesis), but uses methods I haven’t used before

As well as those projects, I’m also working away on my PhD corrections (I hope to get them finished within the next week or so), and public engagement work; you’ll hear more about the latest event that I was involved in tomorrow. This has been a bit of a shock to the system after focussing on my PhD pretty much all the time for the last 3 years.

The transition has been fine, the first few weeks were good – I think I was still working on the adrenaline of thesis submission and then viva success – but after that I found it really difficult to focus and actually make progress with the projects that were in front of me. I took a week’s annual leave in September and then returned to Aberdeen with a horrendous cold that floored me for the best part of a week after that (I am unbearable when I am ill, in the eyes of both myself and everyone around me). I’m now back at work and getting through things with a bit more focus, but the environment is definitely different to when i was doing my PhD. That’s not a bad thing, it’s just something I’ve needed to get used to – and something that I think most PhD students transitioning to another academic role will experience too.

I’m glad that this role is for 6 months – and that’s not because I don’t want to be in the role. Honestly, I think after completing a PhD it’s important to get out of the place where you did it, do something else for a little while, and then move on to something new. For me that means leaving for Quebec on December 28th, and then returning from Hong Kong February 25th. Thankfully, we got the CSO grant that I mentioned earlier, so I’ll be returning to HSRU to start my new role as Research Fellow on March 1st. This Research Assistant role has taught me a lot of new skills – juggling projects, prioritising which to work on first and when to stop to give attention to something else, how to work with people with different working styles than I’m used to, and knowledge around new patient communities and how those communities can work with research to produce unique research projects. Working across lots of different things has taught me a lot, but I’m really looking forward to having my own project to get my teeth into when I come back from my travels.

You Can Be Involved in Research Right Now, Wherever You Are

A few months ago I wrote a ‘publication explainer’ post on the PRioRiTy Study. That post focussed on this paper: Identifying trial recruitment uncertainties using a James Lind Alliance Priority Setting Partnership – the PRioRiTy (Prioritising Recruitment in Randomised Trials) study. Read that post here if you’re interested.

Anyway, back to this post; we are now in the midst of the PRioRiTy II Study. PRioRiTy I prioritised questions about recruitment of participants to trials so that we could provide focus for the research community. PRioRiTy II takes a similar approach, but this time we’re prioritising questions about retention of participants that have been recruited into trials. It makes sense if you think about it; there’s no point in figuring out how to effectively recruit participants into trials if they then go on to drop out later on – we need participants to be recruited and retained in order for trial results to be reliable and useful to patients, members of the public healthcare professionals, researchers and policymakers.

The method that we are using to conduct this project has been used lots of times by the James Lind Alliance (again, more information on that in the publication explainer post I mentioned earlier), and we’re currently in the middle of it.

A few months ago we did an initial scoping survey (I say we, I hadn’t actually joined the team at that point!), that survey generated lots of responses. Those responses were questions and statements about things that people want to know about retention – once this survey closed, I joined the team and worked on data analysis for some of the results.

That data analysis resulted in a list of questions that have now gone on to be included in the ‘interim prioritisation survey’. This is a survey that asks respondents to look at the 27 questions that we currently have, and pick the 10 questions that they think is most important.

If you are:

  • A person who has been asked to take part, or has taken part, in a randomised trial
  • A parent or carer of someone who has been asked to take part, or has taken part, in a randomised trial
  • A person who has taken part in aspects of randomised trials as a partner in the research (eg, helped to get the funding, been on a trial steering committee, commented on patient information such as leaflets, letters etc)
  • A health professional or any member of a research team whose work includes encouraging people to stay involved in randomised trials once they have agreed to take part
  • Someone who has designed, run, analysed, reported on or regulated (eg, ethics committees) randomised trials
  • Someone with experience of the methods of randomised trials (ie, how trials are done)

Then we’d love for you to spare a few minutes to complete that survey – take a look here.
For more information on the PRioRiTy II project, head to the Trial Forge website, and take a look at the video below.