This short post is just an idea I want to throw out their into the aether for someone/anyone to chew on.
Being diagnosed with Parkinson’s throws an individual into a hypothetical ‘foreign land’, where people (doctors and members of the affected community) talk in a strange new dialect about medication, brain chemicals called dopamine and accumulation of proteins that sound like distant galaxies (‘alpha synuclein‘).
The diagnosed individual has to adapt their lives to this new reality in order to get by. They are analogous to a refugee (bad analogy I appreciate, but bare with me – I’m going somewhere with this). Many fantastic support groups are available to help make that adjustment easier. But what happens when that individual wants to get involved with the research being conducted on the condition?
Efforts are being made in this direction, but we can always do better.
In today’s post I would like to discuss/explore an idea that deals with involving the Parkinson’s community in the research side of things, and has the goal of making the research more ‘patient-centric’.
When a refugee moves to a new country, it is an overwhelming experience.
Can you imagine leaving the mountain village that you have lived in your whole life – everything that is normal for you – and moving to some strange, big western city. Being exposed to a new culture, new societal expectations, new eco system, new prejudices, new everything. It must be a shock to the entire system.
If you speak the local language, great. You should be able to make do and get by with a bit of effort. But in order to truly integrate into the new community, you will still need a lot of support.
I was recently talking with a man who was a refugee and he had moved to Canada five years ago.
Canada. Source: Kuoni
He was originally from central Asia, and he talked at length about the hardships of the whole process. Even though his new home in North America was vastly more comfortable than his previous situation, he had still found the whole process extremely tiring and disorientating.
What stuck with me from that conversation, however, was that he could not say enough good things about the Canadian system of integration. He was extremely grateful for everything that they had done for him to help him insert himself into Canadian society. He was particularly impressed with the ‘Groups of Five‘ programme.
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.
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.
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.
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.
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.
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.
- 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