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Here at the SoPD, we are always seeking feedback from readers to provide better content and more relevant information. Today’s post is a request for feedback – an exercise in self improvement.
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Source: Medium
If I have any philosphy in life it is wabi-sabi (侘寂).
In traditional Japanese aesthetics, wabi sabi is a world view centered on appreciating the beauty of impermanence, imperfection, and incompleteness.
Autumn – very wabi sabi. Source: Shelburnemuseum
That said, I see no problem with trying to improve things. And following that line of thought, today’s post is a request for help to make the SoPD less imperfect and less incomplete.
It is very easy in science to get very exciting about the details and fail to see the big picture (a ‘not seeing the forest for the trees’ scenario). Most researchers fall down the rabbit hole of their area of interest and become obsessed with the minutiae. This situation on a science blog, however, can make one blind to what the reader may actually be looking for. Similarly, I have certain ideas about how this blog is developing and where it could be going which may not be the best way to serve the Parkinson’s community.
So in this post, we will review where things on the SoPD currently stand, before then inviting your feedback.
The state of the blog:
The State of the Union address. Source: Tngop
The SoPD blog has been running since the 9th Sept, 2015. There are currently 389 posts dealing with all manner of Parkinson’s research-related content. You can find all of these posts and key words for each on the site map page.
Each posts is usually focused around a particular topic, recent research publication, or clinical trial. The goal is to try to provide an easy to understand background before delving into what new discovery or result has been announced. And at the end of each post, I attempt to sum up what it all means for the Parkinson’s community.
I try to do two posts per week, and a review post at the end of each month. I say ‘try’ because family and the day job take priority, and there is often little time (or energy) come midnight for much writing. If I could find an extra 2 hours in each day, I would love to increase the number of posts (seriously, I genuinely love the process of producing the content), but for now two per week is what is managable.
Very recently (read: this weekend) I have noticed a change in readership trend. I stopped monitoring website stats a long time ago, but a chance glance suggested something was not quite right in stats land:
The graph above shows the number of visitors (per month) to the website over 2017, 2018, & 2019. You can see that after plateauing in 2018, there has been a little dip in 2019. As I said above, I don’t put much stock in the stats, but this new reduction has me wondering if the format is a bit old and stale, or if readers are seeking something different.
I have previously asked readers about format:
- “Are the posts too long?” I asked – no, good length
- “Do you prefer links to material or content on the page?” I asked – content on the page
And I am looking to shake things up a bit in the new year, but some external input would be greatly appreciated.
Which leads me to the obvious question:
What improvements can we make?
As stated above, I am seeking feedback – either in the comments section below or by contacting me directly by email – regarding what features or changes you would like to see on the SoPD blog.
Specifically:
- What could I improve or do better that is currently on the blog?
- What new features would you like to see? What would be useful?
- Are there alternative ways of bringing the same information to you that would be better/easier for you to consume? (There is a SoPD Twitter account which provides daily updates)
A couple of caveats:
- I don’t do guest posts (have explored this in the past, but for conflict of interest reasons I avoid it)
- I don’t do advertising (seriously, some time ago I would write a cautionary post about the dogdy cell transplant clinics and the #&%$£* google ads (posted by WordPress) would be for those same dodgy cell transplant clinics! So now the SoPD is an ad-free site)
- Time is a limiting factor (I am impermenant and appreciate the little time I have)
Any and all thoughts on how to make the SoPD less imperfect and less incomplete would be greatly appreciated. No idea is too crazy if it helps to improve the service being provided.
I look forward to hearing from you. Back to the normal stale, old format in the next post.
Kind regards,
Simon
The banner for today’s post was sourced from OnthecontraryKelly
The Science of Parkinson's 
Less technical analysis of the subject. Cut to the chase in layman’s terms. In one of your recent posts you basically started the post and summed it up with basically – here we go again with another potential pathway.
Three years in to my PD diagnosis and that sums up how I feel about the current state of PD research. Just another false start clinical trial which had shown promise and just another potential cause of the disease. I am not a pessimist my nature, but seem to have become one with regards to PD treatments…
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Hi David,
Thanks for your comment. The goal of the SoPD has always been to try and provide a bridge between the research reports and the media headlines. To go one step further than websites like Parkinson’s News Today (https://parkinsonsnewstoday.com/) and delving into the actual science behind the research. I appreciate that this makes the content less appealing for a general audience and more niche, but I wanted the website to offer something different. If you are looking for a more layperson description, I would fully recommend the Parkinson’s news today website (mentioned above). They do a great job of providing a layperson summary of Parkinson’s research.
I hope this helps.
Kind regards,
Simon
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Simon,
Let me start by thanking you for the amazingly good job that you do with the blog. The knowledge that you communicate arms PwP to better fight PD. Three points:
1. Keep up the good work. But make sure that you get the work, life balance correct.
2. Stay clear of ads.
3. Plan for the web site in case you find you have to leave it suddenly. It is a resource that we don’t want to lose.
John
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Hi John,
Thanks for your comment. Much appreciated. Life/work balance is under control, but I agree that future planning is required. I will look into this, once the busy end of year period is dealt with.
Kind regards,
Simon
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hi Simon, kudos to you for reaching out to get feedback.
I wonder if the recent dip in reader eyeballs reflects the very exciting flurry of high-profile trial announcements in 2017/2018 (Exenatide, GDNF, …) and now a reversion to a more normal pattern? Anyway, I really wouldn’t worry too much about it unless it turns into a long-term trend; what you do is hugely appreciated and remains a valuable resource.
If I have any misgivings about the format and medium, it is that a linear blog isn’t a very good way to help readers keep track of progress in various areas. I know you put quite a lot of effort into tagging your posts so that they can be grouped and organized at will later, but the reality is that most of us don’t bother to do that. Your monthly roundups help somewhat with that, but again they are (of necessity) rather linear.
I find myself looking quite closely at your Twitter feed because it’s a useful heads-up to me about what’s new and interesting. I wonder if a more lasting version of some kind of very abbreviated digest or table of contents might be a useful thing to provide? You could probably automate it to a large extent. You’ll be up to a thousand posts some time soon, and trawling through that lot to find That Interesting Thing About, You Know, That Mitochondria Thingumabob That Simon Posted A While Ago isn’t exactly a walk in the park.
Anyway… whatever you do, don’t stop doing it – you’re providing a unique and valuable resource here and I’m sure most of your readers really, really appreciate it. It’s always my go-to answer when people ask me “how do I find more about the science”.
Jonathan
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Hi Jonathan,
Mayn thanks for your kind words and useful thoughts. Much appreciated. I have long tried to avoid any tables or lists that continually need updating, but I appreciate that the amount of content is now getting ridiculous and a useful way of filtering/ordering it would be good. My only consistent effort in this regard is the previous posts/site map page (https://scienceofparkinsons.com/site-map/), which includes some key words, but I appreciate that this is not ideal. I will explore this further in the new year.
Thanks again.
Kind regards,
Simon
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Thanks for doing this. I’ve often recommended your site to those in pd research.
I really like your humour.
I really like not having ads.
Personally, I often get lost in the science and skim articles trying to work out the essence of the research. But I’m not a scientist, just a serving suggestion. If I were a scientist, I’m sure I’d get even more from your blogs.
If having shorter posts and more links helps to preserve your work/life balance and your sanity, then for goodness sake do that. As my old boss used to say, put on your own life jacket first.
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I agree and disagree whit You, I am not a medical nor scientist at all, BUT I REALLY FIND SoPD BEST-of-the- BEST resource written absolute! scientifically (10 from tens core) and targeting every body whit an EXCELLENT “Plain English information about the research being conducted on Parkinson’s ” WHAT I MEAN IS THAT SoPD ia absolutely the best sci-info digging deep in parkinsons research understandable Yet understandable to anyone even for native foreigners who don’t speak fluent English like me
Absolute nowhere All over the internet а resource that is even close to this jewel here!
SIMON is simply BRILLIANT – WE LOVE YOU
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Hi iscatmen,
Thank you for your kind words. It is almost too much – readers will start to think that I am parading around in the background as iscatmen complementing myself! I am very pleased that you like the website and find it useful.
Kind regards,
Simon
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Hi Jellywoman,
Thanks for your comment. Much appreciated. And it was lovely to meet you at the Cure Parkinson’s Trust Autumn Research Review. Yes, work/life balance is always being checked. I am going to try to provide shorter, more regular posts (famous last words). And will stay a no ads site!
Kind regards,
Simon
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Hi Simon
I’m such a fan of your site but like Jonathan I’ve been spending more time on Twitter lately because i appreciate that you highlight the latest news and i know if it’s really notable there will be a blog write-up to come (which is great).
Now that I’ve had PD for 5 years and have been reading PubMed and your blog for a few years i think I’m a little discouraged like David and a little fatigued so that I’m doing more skimming. I do feel that I’ve got the basics down and you’ve been the best guide for that and i so appreciate the level of understanding you’ve helped me achieve. Maybe participating in a failed trial has contributed to my personal malaise but you have been overall wonderfully encouraging and i am grateful for your kindness and dedication.
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Hi Diana,
Thanks for your comment and for sharing. While I love creating the material for the SoPD website, I often wonder about the ‘psychology’ of it all. Is the website helping by aiding in the education of the PD community? Or is it inadvertently raising expectations (which will ultimately result in disappointment given the terribly slow pace of clinical research). I kid you not when I say that I have sat here long into the night battling with various aspects of this dilemma. I try (and want) to maintain a positive message, but I know that it is hard for long time readers to absorb this when they are dealing with the moment-to-moment, day-to-day aspects of the condition (something that I know little about).
I also like the rapidity of the twitter feed as I can cover a lot more research in those short tweets, but it lacks the layperson description of the underlying biology which the website allows. Something in between the website and twitter is probably the ideal, but I do not know what that looks like.
I admire you for taking part in a clinical trial. Having never done it myself I have a lot of respect of those who have made that decision/commitment.
Kind regards,
Simon
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Simon, thank you for providing this wonderful tool for those of us who are interested in PD research. I second those who are asking you not to stop publishing this wonderful blog. I am sure that most of your readers are people with PD or those who are related to those who have PD (caregivers, family members etc.) For those of us who have this illness the current state of research doesn’t give much hope. I certainly do not intend to demean in any way those who spend their scientific careers looking for answers trying to understand this complex disease. However looking at it realistically it is hard to have an optimistic outlook. Perhaps this hope fatigue is partially to blame for the declining readership. I think that having regular rubric to cover such fundamental aspects of the research like finding representative animal model, progress in understanding disease etiology, diagnostic work that would clearly indicate if you actually have or don’t have PD would be very useful. It is obvious that you can’t possibly reply to all of the questions your readers are asking but if you could have others (may be some of your qualified readers) who could provide some answers to the questions your posts are generating that would certainly make your effort even more valuable.
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Hi Felix,
Thanks for your considered comment – very much appreciated. I am intrigued by the idea of “hope fatigue”. My nature is to get excited by the novel therapeutic angles as I am coming to this situation from the stand point of a problem solving exercise. But I can see that if every post involves the words “novel potential therapeutic target” it could become frustrating for the affected community who interpret those words as “10 years away”. As I said above in the response to Diana, the psychology of the website has increasingly become a concern for me. Perhaps I am over thinking it, but it is always in the back of my mind.
I really appreciate your idea/feedback of having a broader mix of material. This makes a lot of sense with regards to dealing with that psychology issue. I will certainly try to make this a common theme moving forward.
Kind regards,
Simon
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Previous comments seconded.
To my mind the cause of the recent dip in visits is obvious – there were few posts over the summer as you were busy. I know I got out of the habit of checking this site.
On a practical note…
1. Put the link to the comments at the top of the post. I often find them informative or heartening, but seeing if there are new ones at a glance without scrolling to the bottom would be useful.
2. Search box at the top of the site that throws up a list of blog links to eg vitamin b3, so it is easier to go back to a subject of interest.
3. Yes – more follow-up. For example Mannitol still seems to be in play, but what happened to trehalose?
4. Maybe a table with links to posts on nutriaments / life style posts. Whether on our own behalf or for others the hope of something which will at least slow progression is important. Having a scientific reason, rather than old wives tales for eg drinking the green tea is reassuring!
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Hi Linda,
Thanks for your comment and proposed ideas. I will look into the link to the comments idea (a bit beyond my coding skills at present, but should be possible). The search box/dropmenu idea is slightly more difficult – not from a technical standpoint but rather as an ongoing maintanence issue. I have tried to avoid any pages that require continual updates beyond the previous posts/site map page (https://scienceofparkinsons.com/site-map/) which allows folks to find topics using keywords. I will look into presenting this better in the new year. Trehalose is an interesting topic – we are currently exploring this at work, hopefully will have more on this soon. Meanwhile mannitol is ongoing in a clinical trial in Israel (https://clinicaltrials.gov/ct2/show/NCT03823638) and we will hopefully see those results in the second half of next year. Regarding a table, I have previously explored this but it falls into that ‘continual maintanence and updating’ category that I have tried to avoid. I can appreciate the obvious value of a scientific rationale for many supplements, but I currently barely have time to maintain the blog, let alone much else. I will put it down on the list of things to follow up though.
Many thanks again for your thoughts – greatly appreciated!
Kind regards,
Simon
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I was thinking of a Google box that searches only within the blog – I have seen such on other pages. Your keywords are already excellent, which is why Google often finds you.
Maybe add a keyword such as “practical”. To me it is increasingly clear that the NHS neurology service is also imploding, so the more small tweaks an individual can make… And waiting for for drugs to be approved…
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Dear Simon,
You asked us a very beautiful question “WHAT WE CAN DO FOR YOU’ so I rally asked my self, WHAT I CAN DO FOR YOU and my simplest possible “wabi-sabi” answer is: To establish a Non-governmental Non-profit Foundation “Parkinson’s Society of Bulgaria” and with two other doctors as a consultant neurologist and sworn translator of medical literature so that we can,( with your official consent), translate fully and professionally Science for Parkinson’s (online media/forum) in all languages that use Cyrillic letters i.e Bulgarian, Macedonian and Russian, so that this valuable information on innovative Parkinson’s Therapies and research can be reached quickly, correctly and in full, by the Parkinson’s societies of these countries. I am personally speaking Russian and Bulgarian but unfortunately my English skills are somewhat BASIC but fortunately, my son is a clinical bioinformatician researcher in England and he will help this charitable cause
Kindest Regards , R. Nakev
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Dear R. Nakev,
Thank you for your comment and what a wonderful idea! You are most welcome to use anything from the website and you do not require my permission to copy or translate any written material from the SoPD. All of the information on this website is licensed under a Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/) – meaning you can do whatever you like with it. There is already a French version of the SoPD (https://science-parkinson.blogspot.com/) which is being tranlated by a French patient association, and I am aware of several efforts in Chinese translations. No attribution is required. My only thought is be aware that sometimes the images used on the website may be affected by copywrite (if asked, I remove them and replace them with something else). But by all means please feel free to translate anything you find interesting on the SoPD website. I am very conscious that a major portion of the Parkinson’s world are not speaking English.
Please let me know if I can help in any way.
Kind regards,
Simon
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Simon
I have been following your column for 3 years now and find it very interesting.. I tend to skip read it especially the parts I recognise as lifted from prevoius editions. I agree with all of the comments so far.. well done.
I would like to see more sbout research into Atypical Parkinsonisms, particularly PSP. There is a surprising amount of promising research going on and about to start; eg PASSPORT results awaited this winter immununisation against the Tau protein clinical trails to start early 2020.
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First and foremost, thank you for all the time and effort you put into SOPD, There is nothing like it and as a person often frustrated that I don’t have access to journals that publish new research, I figure that if new research results are potentially groundbreaking, I will be able to read about it (with explanation) on SOPD.
One thing that would appeal to me is to preface a post with a short and basic summary of what, potentially the drug (or procedure, etc) does to improve or alleviate a Parkinson’s symptom or condition…i.e. what’s the big picture that matters to me as a person with Parkinson’s. I’d like to know this before I decide to take a dive into the weeds. For example, I found myself scanning the Neuraly Trial post trying to figure out why this would be hopeful to me, i.e. I’m looking for that incentive first to convince me to get an extra large coffee and read the full post.
Joyce
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Hello Simon
As you know, because I have told you before SoPD blog is really important to me, my life would be poorer without it and I am quite sure there are plenty like me. Thank you again.
I spend quite a lot of time reading, understanding and sometimes following up further, in fact my partner often says I spend more time with you than with him 😊!
I really like the introductory comments – it helps to make it a personal sort of blog, and I think we all feel as if we know you and trust what you say. Awful responsibility I know but you are always wisely very clear about not expressing an opinion. We feel you care.
Like others who have commented I skim some bits for 2 reasons:-
I’ve already got the hang of some bits – thanks to you!
I haven’t got the hang of some bits – despite your best efforts, though I do know what bits I can skip but still get the overall picture. Its a bit like being a student and having to read lots of papers for an essay – read the intro and the conclusion and then decide whether you need to go through the detail to find a particular quote or bit of evidence.
I really like the monthly summary. I hope that doesn’t take you too long to do. I feel its largely your tweets reorganised into sections. You may add a bit and I guess that takes time but maybe you don’t need to do as much as you do, maybe we can cope with just copy and paste.
When I first started following the blog, there were so many posts of such length, I remember thinking “Does this man never sleep?” You must maintain your work life balance so if it needs to be one full post a week or even fewer that has to be the way it is. You may then have the difficulty of what to choose to post about I suppose. Maybe you could do some that are basically shorter and are just a shout out – “something interesting here” with some links.
You asked about links and I do – if the subject is of particular interest – follow the links and watch the videos etc and sometimes I am gone for hours!
As far as subject matter is concerned, I am sure your readers are all different so its tricky. I value posts on research that looks at practical interventions exercise, probiotics, cognitive training etc but I guess there is less emerging on those than the basic biology. Also the BIG Data type of projects when they come up with links, personally I think the real answers to what is going on may come from that sort of work.
You said you had ideas about where the blog was going – lets have them! As long as is isn’t going to disappear.
Thanks again for all that you do.
Eirwen
PS Thanks for retweeting me – I am trying to get my little blog more widely read 😊
ent from Windows Mail
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Hi Simon Thanks for asking for feedback. i am an intelligent guy (PhD in Clinical Psyc) but not a science guy. One of my cognitive symptoms is intolerance for complexity. i like it when you ask Socratic questions just to keep your reader engaged. My suggestion is to intersperse short paragraphs or boxes Summary for Dummies tell us how this little molecule or obscure process can make a difference in my life. You sort of do this at timesl Just do it a little more often.
Thanks
Mac Greene
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Hi Mac,
Thanks for your comment – much appreciated. I like the idea of small summary boxes interspersed across a post. Will test it in some upcoming posts. Thanks again!
Simon
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Simon, Pls keep the monthly updates. I did compose a longer reply but a gremlin along the way ate it. Peter
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Hi Peter, thanks for your thoughts. Will do. I think it is a useful feature, though I have been wondering how I could evolve it a bit.
Kind regards, Simon
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Hi Simon: As a clinical operations guy with YOPD I find your posts and maintenance of this website invaluable. I love the science and the presentation; I think the images/pictures/powerpoint diagrams are a great complement. I’d like to think your site is a treasure trove for PhD candidates looking for projects. The monthly sum-ups are particularly useful.
“What new features would you like to see? What would be useful?”
I’d actually like to see a page that sums up or is devoted to the agents currently in clinical testing. Or even simply a flag on the recent posts listing that would point a reader to a story about a compound that is in testing or will be in testing soon.
Most importantly this site gives patients hope; it’s reassuring to find out how much work is going on in this field.
Thanks again,
Chris
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Hi Simon,
It was great to finally meet you at the Cure Parkinson’s Research Meeting on October 28th October. We talked a bit about how useful the SoPD blog was to me and my wife. Here are some more comments.
Before I discovered the SoPD blog there was no reliable and critically, central source of information on any the PD research. Historical or new. My wife was diagnosed in 2012 and no one we met in our PD clinic could tell us what the current research was, and they didn’t seem to have much enthusiasm or inclination to share any information they may have had.
I always look forward to getting my almost daily updates via this news consolidator https://blogtrottr.com. The updates can be new posts or comments on your posts. The comments I flick through but your new subject posts, and particularly your monthly research review posts are read in detail. I understand from the other comments above that these are a compilation of your Twitter posts, but Twitter is not an easy read, especially when I am running through the updates with my wife
The introductions are always entertaining, and informative. Puts me in the right frame of mind for what is to come 😊
I am not a scientist but have always been interested in how things work. I really like the way you repeat some of the basics each time. If I know it I skip it, but I also use them as a test of my memory and understanding.
For me the current layout is clear and easy to follow, and just enough links to click on if I really want to get more detail. I usually don’t click on the science research papers (you provide more than enough detail in the main body of the blog) but I usually have a look at the companies behind the research.
Your blog provides us with some hope, based on facts. Compared to where we were 7 years ago (personally, and the whole PD Community), there is so much going on something has to eventually come through. Please keep up your amazing contribution. It makes a real difference.
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Hi Simon, I hugely appreciate your work. There is more info/complexity than I can cope with and it keeps coming! I would love some one to take the practical things PWP can do. (EGCg, light box, NAC, etc). Then publish this shorter document.
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