Special Interest Group on Parkinson and Technology
A quick introduction to the concept of Special Interest Groups, and it’s first implementation in SIGP@T.
By Werner Remmele
What is a SIG?
A SIG is a group of people who have come together out of an interest in a particular component of research into Parkinson’s disease, in the case of SIGP@T the development of assistive devices for patients or the medical caregivers.
The members decide on the level of organisation of their SIG.. The variations range from a loosely collaborative group without formal elements to a strictly rule-based organisation with fixed, defined procedures.
Therefore each SIG is responsible for setting its own goals and for achieving them: there is no predetermined structure, leadership or membership management. Nor does it automatically provide information to members and the Parkinson’s community through circulars, e.g, a newsletter. This flexibility allows for organisations that are largely tailored to the needs of the members.
What goals can be achieved with a SIG?
As each SIG specialises in a particular area of Parkinson’s disease, the possible objectives depend on the requirements of that area. A well-established, structured research-area will usually have a high entry barrier and offer few new opportunities in which (usually) non-professional SIG members can take ‘credit’. On the other hand, these often difficult to access topics offer opportunities to present them in a comprehensible way, and thus provide targeted information for the Parkinson’s disease community. It is not necessarily the grade of novelty that makes information valuable, but also its preparation and interpretation, which allows even non-specialists among us to recognise its importance and draw our own conclusions.
From my point of view, the following possible objectives can be achieved:
- To develop scientific knowledge (will only be possible in the fewest areas)
- Collection, structuring and maintenance of knowledge
- Knowledge transfer to the Parkinson community
- Preparation of proposals for research or development topics – including product ideas.
This broad range of tasks establishes the SIGs as an interpretive unit, establishing understanding between Parkinson professionals and the Parkinson patients, thereby articulating the wishes and needs of PwP and their partners and identifying and explaining the relevance of research and development results.
Which are ‘our’ technologies?
We will focus on ‘intelligent’ systems, but not restrict ourselves to an individual technology.
We use the term ‘system’ as an umbrella term and thus avoid restrictions in the classification of products, such as app, robot, service …
Support that we can provide can take place in three disjunctive areas, all including the Parkinson patient:
- Direct support in the treatment of the disease, e.g.
- Intelligent pillbox
- Individual dosage of medication
- Direct support, mastering the issues of the daily life, e.g.
- Maintaining mobility
- Aids to operate complex interfaces
- Support of the healthcare professional, e.g.
- Improving diagnosis
- Control of the effect of a personalised drug mix
The distinction is useful because each area has its own requirements.
What are our goals?
My basic understanding: I don’t want to wait passively until I hear by chance about a possible development in one of my home areas. I rather would like to be a part of this environment
I want to be an asset in the community, whose contributions are appreciated (I will have time to sit around and watch soaps later, when my grey cells won’t be working properly anymore …).
So far – and to start the discussion – I would like to introduce:
- We want to collect and pass on knowledge in the area of intelligent systems for Parkinson:
- We should try to get as good a knowledge of the market as possible – and continue to maintain it.
- Overview of products in order to compare and evaluate their usability for PwP.
- Generating ideas for products and convincing the industry: Become an ‘Innovation Driver’.
- Acquire and maintain a basic understanding of the technologies that push the area.
These targets reflect my interest in SIGs, as an active component of the Parkinson Community as well as some memories of technologies I dealt with during my professional life. But, despite being selfishly taken as targets for the group, I believe, that they are a valid and profound starting point for this SIG.
How are we going to publish our results?
This is one of the main tasks of the SIG and must be anchored in every SIG. SIGs are not a reason in themselves, but serve the community and ultimately the goal of defeating the disease.
The last weeks and months have shown that there are better, faster, more intensive methods of imparting knowledge than holding conventional conferences. In this context of virtual events we should be able to generate the optimal attention for each topic, for example by preparing lectures for a main event, thus building up expectations, etc.
The WPC is out of the ordinary for one reason: It is the one event that electrifies every participant and leaves a life long lasting impression: We all are Parkinson! To experience such an atmosphere of positive emotions, meeting dedicated professionals, seeing thousands of fellow PwP struggling with similar problems my body confronts me every day – and still be there, absorbing every single ray of hope … Having been a part of this story myself in Montreal, I am proud to have received the honour to become an ambassador for the 2022 congress.
With memories so clear and the knowledge, that this congress in Canada has changed my whole life with Parkinson, my perception of the disease and the way I live with it, I am happy to help others to plan and participate in Barcelona 2022.
SIGs, too, play a role in this: I strongly believe that we have the people and the organisation to show good results even within a few months. There will be events to attract people to this topic, the first one will already be held on 21st Nov 2020.
We expect that we will create a focus area, which also may be dealt with at the WPC2022, and have found people to present there or – at least – will challenge them against others that may be presented there.
I hope that the increasing importance of this field will convince potential participants so that as many as possible get the chance to experience the vibrant, energising, positive flair of the WPC, like I did during one of the best weeks of my life in Montreal.
Despite Parkinson – or because of Parkinson.