Parkinson

Improving the SoPD blog – any thoughts? – The Science of Parkinson’s

It has been a week since we posted our discussion regarding where we think things are going in 2017 in the world of Parkinson’s disease research. Today’s short post is a follow up piece on how we can improve the SoPD blog.

Specifically, we would like to ask for your thoughts as to what particular improvements you would like to this on this blog.


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PPI in action. Source: Parkinson’s UK

Patient and public involvement (PPI)

PPI is a big deal in the world of Parkinson’s research.

It involves researchers and people affected by Parkinson’s disease (both sufferers and carers/family/friends) work in partnership to plan, design, implement, manage, evaluate and disseminate research. It is a win-win situation for everyone involved as it seeks to achieve a more patient-centric approach to the research.

Parkinson’s UK provides lots of very useful information on PPI (Click here to read more).

Here at SoPD, we see great value in PPI and we would like to embrace it by asking for your feedback on what we are doing here.

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). This situation can make us blind to what the reader of this blog may be looking for. Similarly, we 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 at the SoPD currently stand, and then what future plans are being developed, before we then invite your feedback.

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The State of the Union address. Source: Tngop

So lets begin with where we are at present.

The state of the blog:

The blog has been running since the 9th Sept, 2015. We currently have 90 posts dealing with all manner of Parkinson’s disease research-related content. If you are interested in a particular topic, you can use our site map page to search for key words across all of those post.

In addition, we have a menu bar of key topics related to Parkinson’s disease, such as dopamine and tremor. We also have a page of lectures that we would like to expand in the new year.

The post are usually focused around a particular topic, recent research publication, or clinical trial. We try to provide an easy to understand background on the topic before delving into what new discovery or result has been announced. At the end of each post, we try to sum up what it all means for the Parkinson’s community.

For shorter and more regular updates, we also have a twitter account that you can follow.

Future directions:

In this new year, we are planning to:

  • add more pages to our menu bar dealing with key aspects of Parkinson’s disease (such as “what is a Lewy body?”)
  • encourage great involvement and participation in Parkinson’s research
  • put some videos on the site which will explain some of the more commonly asked questions regarding Parkinson’s disease.

There are some other ideas, but these are the ones we are prepared to put on paper and be held to.

And this brings us to your feedback.

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Source: Youtube

What improvements can we make?

We are seeking feedback here – either in the comments section below or by contacting us directly by email – regarding what features or changes you would like to see on this blog.

Specifically:

  • what could we improve or do better that we currently do on the blog?
  • what new features could we add?
  • are there alternative ways of bringing the same information to you that would be better/easier for you to consume?

Any and all thoughts would be greatly appreciated. Please help us to improve the service we are providing.

We look forward to hearing from you.

The team at SoPD


The banner for today’s post was sourced from OnthecontraryKelly

Published by Simon

I am the Deputy Director of Research at the Cure Parkinson’s Trust. Before that I was working as a Parkinson’s research scientist at the University of Cambridge where I conducted both clinical- and lab-based research on Parkinson’s. I have worked in the Parkinson’s research field for over 15 years – both academically and in biotech ventures. In addition, I am the president of my local Parkinson’s UK support branch in North Hertfordshire. All of my views/opinions expressed here are solely my own, and may not reflect the views of my employer or associated parties.
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