Demonstration of an OpenCare model of a ‘makerspace’, We propose a laboratory where people living with motor impairment due to e.g. multiple sclerosis (MS), stroke or spinal cord injury (SCI) can meet and collaborate with other people. There will be mentors (physiotherapists, engineers and designers etc.) and together we will create solutions to personal needs in form of assistive devices. A cooperative model where citizens with various skills can work together on realizing devices for use in everyday life, that will improve or maintain individual functional capabilities. This model will explore ways to transfer research results directly to users (target participants). New and existing ideas will be challenged and transformed into methods and assistive technology for activities of daily living. Initial focus will be to demonstrate how the challenges of mobility can be resolved by helping people’s creativity in a social environment. One challenges that people often meet is the need for adaptation of tools to be able to perform day-to-day tasks as .abilities change, In the WeHandU laboratory people will be able (and helped) to implement such changes.
More participants = more results
The basis of WeHandU is to be volitional participation of people with skills in various aspects of assistive technology. Solutions will vary from realizing simple mechanical aids to involvement of expert researchers. The new infrastructures of makerspaces (also known as fablabs or hackerspaces), allowing the do-it-yourself construction of objects, lend itself as a host for the WeHandU initiative. Here sophisticated devices can be prototyped using advanced machining processes (e.g. 3D printing). A lot of individuals create a personal DIY solutions. Those not marketed or provided by the health service can be manufactured in the WeHandU framework. Likewise subsequent modifications can be easily be implemented as new needs arise. People challenged by MS, stroke and SCI will find help in peers, designers, engineers networking with clinicians as well as people with ‘soft’ skills in the socializing context of a makerspace. One of the concrete challenges to resolve is addressing the problem of dropped foot . With a vast practical experience we can guide people to select, try or even construct their foot drop correcting stimulator. A device that, despite solid proof of efficiency in scientific literature, has not been adopted by the healthcare systems. Another of the most important problems regards the vanishing hand function. Here a recently developed technology comes in. It’s a open source (meaning that all details of how to replicate are publically available) device for strengthening the hand, using FES (mecfes.wikispaces.com). It has been tested clinically for improving hand function in SCI, but there is no contraindications for applying it to people living with MS. Most important of all, this initiative in synergy with OpenCare will challenge the existing healthcare providers to adopt the model and provide a more user centered approach.
The WeHandU idea is mainly concerned about preserving autonomy by assistive technology for the hand function and walking using state of the art technological inventions combined with simple do-it-yourself manufacturing techniques in a socially engaging environment. Use of nowadays rapid-prototyping technologies(es. 3d printing), allows to bring creative people together for an effective low-cost collaboration process which brings real and efficient industrial solutions in relatively short time.
@Alexander_Shumsky welcome to Edgeryders, and thanks to Rune for inviting you!
I read this and also the full project description, and I see it ties nicely to Rune’s question from before: what it would be like for patients to work side by side with researchers and makers. But to be sure: are you working on a makerspace or on a series of activities to happen in one or more existing spaces? And where?
then we know about a number of other solutions for other physical functions. When you work with people you find solutions.
Where: We need to start locally of logistic issues. Telematics are good but physical contact is better. As said, WeMake is close so if they agree, this is where we start. We need a hub to share ideas, thats where I hope OpenCare & Edgeryders come in.
Who: We will be dedicating our spare time to this. For some it overlaps our profession. We need to cover many diciplines (also just as contact persons). We will work to include. Participants will become experts (mentors and facilitators)
Future: It MUST spread as makerspaces have spread. Hopefully with shared MISSION and VALUES, concepts of WHAT may differ as local resources differ.
Why: Because it will fill a need that the healthsector is not meeting. Personalized, responsible selfcare and building a DIRECT bridge between healthcare professionals/researchers and users.
Having seen Constantino resurfacing I get the connection now and have a much better sense of what you are up to, clearly on the side of OpenCare prototyping and testing the idea in practice.
Yes @Noemi, I have the great pleasure that @Alexander Shumsky is working with me at the hospital. We have proposed @Costantino to join with WeMake on this one. Anyone are strongly encouraged to contact us, we really need some clinical people or just some epathic persons. Often what people really need is just to talk.
@Noemi, you have a good one in “what it would be like for patients to work side by side with researchers”. That was how it used to be, and that was the most productive time in scientific history. Now, if you, say, make a survey of what colour of wheelchar is preferred, you need permissions from ethic comittee, legal paperwork etc, = >2k€ and >2-3 months delay
This initiative is not intended as research, not intended as competing with hospital regulations. It’s aim is to join experts (=people dedicating time to making mistakes) with newbees (people spending time adapting/improving to new/chronic physical conditions.
Welcome @Alexander_Shumsky . This is exactly the core idea of opencare: communities endowed with both care problems and care solutions, equipped with collective smarts and open knowledge.
Note that this is not the same thing as “patients working with researchers”. Pharma has this already. But it maintains a hard distinctions between patients and researchers, problem-bearers and solution-makers, consumers and producers. This is about patients being researchers, and viceversa.
Thanks, @Alberto. You coined it perfectly ’ This is about patients being researchers, and viceversa’. Actually we try to avoid terms like patients (patient - Wiktionary, the free dictionary) but prefer participants, mentors and facilitators differentiating the role of engagement.
@Noemi, @Alberto - I had a short conversation with @Rune and @Alexander Shumsky yesterday. Besides discussing OPENandchange, I was also asked to try and help to find physiotherapists and patients who’d like to volunteer their time to work on their research. Do you know of anyone in the community who could be of help here? Or a good way to connect? They really want to have people from Milano and around, in order to be able to work hands on and regularly with them.
Thanks @Natalia, re ‘volunteer their time to work on their research’ I’d like to point out that we do not consider it research, rather a quest. The research has been done, it’s about applying the results and create value for the comunity.
Who do we know in Milano in medical care/ practice?
I am hoping one of you can help connect Rune and his team to practitioners and patients interested to volunteer to explore how assistive technology can move forward and into use? @Rossana_Torri, @Franca, @Francesco_Maria_ZAVA, @Alberto_Simonetti ?
No exactly clinical expertise, but very interesting link!
Hi
Some time ago, just before the OpenCare Project’s start, I had tried to involve the LEDHA (http://www.ledha.it/) that, as reference body for the associations of disabled people, could then and could today contribute to the construction of competent connections as parties concerned for the development of “WeHandU”. I believe that the proposal to Rune can actively engage these people.
Of course I agree on the role of WeMake as a reference point and work space! : D
Tanks +Francesco Maria ZAVA. What happened when you ’ had tried to involve the LEDHA’? I had a look on the site. I’t really would be a great help I you, or someone (+Costantino, +Alexander Shumsky) could inquire.
A. We are about to establish the first prototype session (prototyping the flow of encounters in WeHandU). A1. We are contacting candidate participants (people with tetraplegia/multiple sclerosis or stroke).
B. Grant applications (we already got swedish, local and other funding + materials) - preparing 100k request
C. Finishing instructables for solution for the hand.
D Launching the WeHandU.IT site
Any participation would be great fun (as in functional) for all. Especially on public relations (A1) management (B) and networking (D)
