Today’s post will be something a little different: 12 months ago today I stepped away from being a Parkinson’s research scientist and joined the Cure Parkinson’s Trust in a new role of deputy director of Research.
It has been an amazing (and very busy – note the back dating of this post!) year! I definitely have no regrets, and the honeymoon is certainly not over – I am still very much loving the new role and the challenges/opportunities it brings.
There have been some major adjustments though and a few unexpected surprises.
In today’s post, I will discuss what I have learnt over the last 12 months and share some of my observations.
As regular readers will know, after 15 years of both lab- and clinic-based Parkinson’s research, last year on the 1st October I stepped away from the academic world to take on a new role as the Deputy Director of Research at the Cure Parkinson’s Trust.
It was a rather crazy moment for me personally, because at the same time that I was being offered this deputy director job, I was also being offered a lecturer position at a UK university.
A university lecturer. Source: Salford
Now, understand dear reader that I had been gunning for a lecturer position for the last 5 years – completing dozens of applications and only being invited to a handful of interviews. It had been a long hard slog, but having my own research group had been the goal for a long time. I was so focused on that idea, that I had not really entertained any other options.
So it was somewhat bewildering when a group like the Cure Parkinson’s Trust came out of left field and offered me something completely different.
And it was truly one of the more surreal moments of my life to then actually say ‘Sorry, but no thanks‘ to the one thing that I had been striving for for so long, and to say ‘Yes please!‘ to this fascinating second option.
But the decision to join the Trust was very easy in the end.
What do you mean?
Keeping this website for the last 4 years (8th September 2015 was the first post) has exposed me to many fascinating areas of Parkinson’s research that I had not been previously aware of (think, spinal cord stimulation or non-invasive deep brain stimulation). And while it has been extremely stimulating, it has also been very exciting to see the pace of things increasing in just this short space of time.
And while I appreciate that therapeutic progress is slow for folks living with the condition, it is honestly an amazing time for Parkinson’s research:
But while I was writing about it, most of the actual action felt very distant. I was very much just the observer.
Thus, when I had to make the decision last year regarding what to do next (lecturer or CPT), it was simply a regret reduction exercise:
It is such an exciting moment for Parkinson’s research, in 10 years time will you regret not getting more involved with the Cure Parkinson’s Trust?
The answer was always going to be yes.
What is the Cure Parkinson’s Trust?
Why I’m glad you asked.
For readers that are unfamiliar with the Trust, it was started in 2005 by four gentlemen who had been diagnosed with Parkinson’s and were disappointed with the lack of research focused on actually curing the condition.
The four founders of the Cure Parkinson’s Trust: Air Vice Marshal Michael Dicken; the legendary Tom Isaacs, Sir Richard Nichols, and Sir David Jones (and their EXTREMELY supportive wives!)
They were not interested in ‘care’, they wanted ‘cure’, and so they foundered the Cure Parkinson’s Trust.
Since it’s humble beginnings, the Cure Parkinson’s Trust has become an international funder of Parkinson’s research. It supports preclinical research that is 1.) within 5 years of clinical testing and 2.) has the potential to have a disease-modifying effect on the condition (Click here to read more about the research funding).
The Trust also coordinates the Linked Clinical trials (LCT) initiative in partnership with the Van Andel Institute in the US.
The LCT initiative is a major clinical trial programme focused on disease modification in Parkinson’s. The programme involves an international panel of 20 Parkinson’s experts meeting at the Van Andel Institute in August each year to evaluate 20-25 compounds that may have demonstrated disease-modifying properties in models of Parkinson’s.
Of these, 4-6 compounds will be prioritised for taking forward into clinical testing in Parkinson’s. As a result of this process, the LCT programme currently has 16 compounds in 17 ongoing clinical trials being conducted across a world-wide network of hospitals. The LCT initiative has given rise to drug trials investigating Exenatide and Ambroxol which may not have happened it the programme didn’t exist.
And the goal is to increase that number of trials to 25 over the next 18 months (Click here to read more about the 2019 LCT meeting – there will shortly be a SoPD post on the recent meeting).
Above and beyond all of that, CPT is also a great place to work!
Interesting. So what have you learnt over the last year?
Several things immediately stand out:
1. The language
We all speak English here in the UK right? And you’d think that shifting from one job to the next would be simple, given that everyone speaks the same language.
But here’s the thing: We don’t speak the same language.
Or at least we do, but in different ways. How people talk in the academic research world is vastly different to how folks speak in the ‘third sector’ (charity) world. And how you speak with a executives of a biotech company is rather different to how you speak with a patient support group.
Kind of obvious I know, but changing the language has been one of the biggest adjustments for me (while I am OK behind a keyboard, I am not a natural speaker/conversationalist).
2. No access to journal reports
In February this year, the University of California announced that it had stopped negotiating with the scholarly journal publisher Elsevier, and it was letting its subscription end.
Elsevier is one of the world’s largest scholarly journal publishers – it publishes more than 400,000 research papers each year. But the majority of those papers are held behind a pay-to-view scheme. To cover their “costs of publication”, Elsevier charges for access to the research that they publish.
For a major research institute like the University of California to cancel their access to Elsevier’s vast libraries of research journal articles, was a crippling adjustment for the scientists working for the university. But the University of California was not alone. Thousands of researchers across Germany and Sweden found themselves in the same situation when in February their institutes also refused to pay the high subscription fees Elsevier were charging (Click here to read more about this).
When I left Cambridge University last September, I lost access to their huge electronic library resources which provided most of the major research journals (including Elsevier publications). I had thought that there would be ways and means around this.
How naive I was.
There is nothing more frustrating in my new role as not having access to the ongoing research. Every time there is an interesting new paper, I have to email the authors and ask for a copy and then wait for them to respond (if they respond!). In a world of instant gratification (click a button and it is yours), I have had to learn to be patient which is not my nature.
If we solve Parkinson’s tomorrow, my next mission will be going to war against academic publishing paywalls (#openaccess). Hey, Oxford University Press – I’m looking at you.
3. The huge efforts being made
I thought I was well aware of the scope of Parkinson’s research going on around the world before joining CPT, but I was not so au fait with the behind the scenes stuff. The last 12 months has been eye opening.
There are countless examples of incredible individual efforts and sacrifice being made to nudge the dial towards a better understanding of Parkinson’s and improved therapies. I can write on the SoPD website about incredible initiatives like the Brin family supported ASAP programme (Click here to read a SoPD post on this topic), but readers will know nothing about individuals like Dr Ekemini Riley who is managing the development and launch of it.
There are so many examples of unsung heros behind the scenes.
And can I just say that Helen Matthews at the Cure Parkinson’s Trust is one such individual – she deserves to be canonized!
4. It’s not scary
When I left academia, I had a few research colleagues tell me that I was crazy. “You’re ruining your career!” they cried.
And I will admit that leaving the thing that you know, for something completely new is always daunting. But remember that change is a good thing, and my message to researchers who are contemplating similar moves is “it’s not scary”.
To be fair, I had been previously working with the Trust before I made the move. I had helped the Director of Research Dr Richard Wyse with writing the LCT dossiers before joining, and I was familiar with the organisation. So it wasn’t a complete leap into the void and hope for the best situation.
A bit of preparation is necessary would also be my message to those researchers considering career change.
5. The handling of dark matter
You know how they say that dark matter accounts for 85% of the matter in the universe?
Dark matter: What is a wimp? Source: Symmetrymagazine
Well, the same quote could apply to Parkinson’s research (and don’t read ‘dark’ as negative). I used to assume that there is a certain portion of Parkinson’s research tied up in intellectual property and it will take some time to reach the public domain, but I am shocked by the potential scale of it. I am simply guessing based on the little that I have been exposed (under non-disclosure) to over the last 12 months, but at a wild guess I would say that for everything that we see in the public domain about Parkinson’s research (the known universe), there is the same amount – if not more – of research that isn’t visible (the dark matter).
Seriously, I’m like a kid in a candy store – there’s a lot of really interesting stuff going on.
But here’s the rub: I can’t tell you about any of it. I can’t tell you what kind of candy they stock, or where the store even is.
And this has been another major adjustment that I have had to make: being extremely cautious with the handling of confidential information. It’s a whole new world of potential legal catastrophy for me – and I’m way too pretty and delicate to go to jail.
6. The metrics
A good friend asked me the other day if I was missing the lab bench, and I admitted that part of me is. But it’s not for the reasons that I thought I would miss it.
I always enjoyed the work with biomedical research – it was generally slow, labourious work, but being able to survey (read ‘quantify’) what you have achieved at the end of the day was reinforcing.
The metrics in the new job are so much different. And I am still getting used to them.
So what does it all mean?
This post was not intended to be an advertisement of my employer. While the Trust does remarkable work for an organisation of just 16 people and I’m happy to sing it praises, I wrote this post more to share with you how my life has changed over the past 12 months. And also to provide other researchers with an example of what can happen when you step away from the academic world and take on something completely different. I know that I have been very lucky with that shift.
In fact, I would go so far to say that I am extremely fortunate to find myself where I am (seriously, I am literally a simple farm boy from the rugby-mad countryside of New Zealand – under no ridiculously fantastical storyline am I supposed to be here). I feel like I have found my feet in the new role now and – as you shall see from an upcoming post at the Linked Clinical Trials meeting – there are parts of the job that I have become rather obsessed with. I don’t plan to make regular 12 month updates about the job, but do understand I am incredibly excited about what the next year holds.
Ok, enough about me – next post, back to the research.
Oh, and if there are any researchers wanting to talk about career shifting and want to talk: contact me.
The banner for today’s post was sourced from culcmirzah4
18 thoughts on “Administrative news: One year #PostAc”
Simon – as a woman with PD probably nearly twice your age, I think it’s safe to tell you I have come to absolutely adore you! You are smart (obviously), funny, and compassionate-your posts (the parts I can understand) make me laugh and give me hope. I love your passion and that you share yourself with us (your readers). Thank you. I’m so glad you are happy in your new role and look forward to future posts.
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Thank you so much for your kind words. Very much appreciated (the cheque is already in the mail).
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It is a beautiful afternoon in Minnesota. I came home and fixed a glass of hot tea. After opening my email I am blessed to quitely sit on my patio and read this posting. Nothing else in my email comes close to the joy of meandering through your updates.
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I think this is the nicest comment anyone has ever shared. Thank you so much! It’s made my week (and it’s only Monday).
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Hello Simon, how do I thank you. Before I found your site I spent hour upon hour doing research and trying to keep up with developments. Little did I know that you were doing all of this for us. As we all know how dealing with Parkinson’s is a job onto itself. Your site not only keeps us up to date and informed it makes us feel like we are part of what you do. Your sense of humour and your commitment to detail has been so beneficial. You have made it so easy for us to stay informed for this I can not Thank you enough.
Congratulations on your new position
Now go help them find the Cure.
Thanks for your comment and kind words. You’re very welcome. Please let me know if there are any particular topics you’d like explored.
There is one thing that caught my attention. Its quite different but would like to Hear what you think on Elan Musk, Neuralink, I watched the long version with Q/A . It looks pretty impressive.
Yep, a lot of requests for a Neuralink post. It all sounds interesting, but until the company shares a bit more about what they plan to do with Parkinson’s, there is currently not much to go on. A lot of that ‘dark matter’ information I was talking about in the post with that venture. It will be very interesting to see what they put in the public domain when they are ready (full disclosure: I currently have no insight whatsoever). This was the last article I saw mentioning it: https://www.inverse.com/article/59052-brain-implants-musk-disease-future
Nadra has said exactly how I feel about your posts. I sing their praises at all opportunities. And they have made a direct impact on the way I manage my Parkinson’s.
Also, you are a lecturer, Simon. You just can’t see your students.
Keep up the amazing work.
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Thanks for your comment and lovely words. Much appreciated.
I am pleased that the move has worked out ok for you. And that you stll find tme to keep us all up to date with research progress..
I hope all is well. Thanks for your comment. Yes, as I said in the post, I have been very lucky. Finding time for the SoPD is the only struggle at the moment, but not a day goes by when I don’t see a bit of research and think “Oooh, that would make a good post”.
I agree with your frustration with academic papers behind paywalls.If all else fails I use Sci-Hub website to break the system.
I don’t know what you are talking about regarding Sci-Hub, and even if I did know about that website I’m much too law abiding to ever considering using it 🙂
An email to the communicating author requesting a pdf will often circumvent the publisher.
George Monbiot is worth reading :
Thanks for your comment. You are right, reaching out to the authors helps and can lead to interesting discussions. But that is the “L-dopa answer” to the issue – it’s just covering up the symptoms, not dealing with the actual problem.
The BBC world service has a good episode on this ( https://www.bbc.co.uk/programmes/w3csy6c4 ). Academic publishing paywalls will be my next fight, but I’m a wee bit preoccupied with the current battle.
Simon, You are absolutely MY SUPERMEN and MY HERO
2. No access to journal reports
How about registering at the British Library, or wherever, and then being able to use eduroam to access their libraries? I’m sure you will have a friend who can get you emeritus position at UCL, Kings
all the best,