TIPS for research in prosthetic arms for below elbow amputees [paper review / tips]

There was this recent paper 1[1] [link] presenting us with "tips for research" for prosthetic arms, and it is a great example of what thoughts seem to prevail these days, with regard to what research is expected to be done. One thing however, that we also wonder, is, how was it possible, that 2020 could come, and body-powered hooks are still the best thing, why body-powered arms still win Cybathlon 2020 while already winning Cybathlon 2016, when these events were clearly devised to make myoelectric technology shine [link], while the never-changing same type of opposition refers to "Captain Hook" [link]? What, in terms of the social tension fields and values, was maintained, over years or decades? So these tips also may reveal a continuation of pre-existing deep problems that separate our planets (as you know, arm amputees and real-life prosthesis reside in a planet that is almost disjunct from the "non-disabled" world of fun in prosthetic research, et cetera). It may be a step towards at least trying to understand these published ideas better by providing some comments to allow for better understanding in a wider context.

TIPS on Translation of research findings.

  • Focus more research on translational research stage 3 (translational research can be divided into three stages: activities to establish the effectiveness of care (stage 1), activities to assess who benefits from promising care (stage 2), and activities to determine how to deliver high-quality care reliably and in all relevant settings,mostly home try-outs (stage 3)) [1] - Comment: not to discourage these tender steps, what we really need are quite simply killer ideas, and killer applications.The average arm amputee may just be impatient, depressed, pissed off, and in chronic pain, and in no mood to cater to any incremental and basically insecure steps as to what a "promising" but arduous research path towards a next research paper may be (see death cycle of hope - link). One wants to offer true killer solutions and killer applications, prosthetic solutions that look and are so good, so pervasive, so spot-on, that people want to sign up and take them home, immediately, and all by themselves. To avoid the otherwise immediate backlash, then, these solutions may have to be so comfortable, reliable, easy to control, affordable, good-looking, and robust that the users are compelled to buy them, wear them and use them at all times with a great experience - even when the next day threatens to be a tough day. Because in real life, now, in 2020 and probably still in 2025, once the arm amputee life experience has exceeded a certain experience level in dealing with everyday life without a prosthesis on, we are perfectly well off without such contraptions.And given a typical conventional commercial prosthesis, chances are high that there is significant if not prevalent downtime, so even a "good" contemporary prosthetic arm tends to be available at maybe 25% of the time and then ends up getting worn at 5% of the time at first and 0% later. Then, we can, are able to, manage to, carry out to, perform to tie our shoes, open a can of beans, and make coffee or go out for a movie, all without a prosthesis or such contraption, being trained extremely well by mere exposure - and once that has sunk in and become a second habit, this list of tips is going nowhere.Then any research plan, depending on specifics, just may be another riding a dead horse from its inception, particularly if employing myoelectric technology [link]. So, this is not really a critique, but a comment as to where in the world our relative positions may be on this.One killer application is the ability to use - and I mean use as in really use - the prosthesis in the kitchen.
  • Consider home try-outs to be part of research proposals [1] - Comment: home and work try-outs actually are the only way to find out if your project or prototype is anywhere near close to real-life success. It is in your deepest own interest to reach out that way if ever you feel like you have something useful on your hand.Conversely, there are things that are being developed, that I would not ever want to test, that I would not even touch with a knitting needle. One of the strangest experiences, where a line of questionable testability was reached, was when I tested the LN-4 hand [link].

  • Make use of the advantages of smart technology and telerehabilitation [1] - Comment: Anything "tele" may be a problem. The current reality is that, for example, Ossur switched that software off that I had used always and that defined my iLimb as a programmable multi-grip device [link], as that software when starting it up, first had to obtain permission to run from some Ossur server computer - and since a while, Ossur server computer now denies these requests.The question is whether you can make use of truly functional, direct, physical, mechanical, and actually useful technology - because anyone can provide a remote, virtual or apparent mock-up of anything that may last just a really short time and not even make it into a second, third or fourth revision, such as some recently glorified mock-ups have shown.I also prefer software control where I get to actually control, not stuff that always checks some license or permission online - after all, when the customer or their insurance paid 80 000 bucks for what in essence is maybe 700 bucks worth in materials, why are excessive "license checks" for the software necessary seeing as if the software always has been complimentary, to begin with, and, totally proprietary and manufacturer-specific anyway.Have you ever used a bike with disc brakes - that suffer from relatively frequent proprietary problems, require professional repair and maintenance, and are expensive - and then compared that aspect with the quality of riding and maintaining/using a rim brake road bike? In my experience of using devices, vehicles, tools, et cetera, there is nothing better than an easy to service, lightweight robust tightly set up road bike. Along the same line, I think that a really lightweight, high-end, mechanical body-powered arm is by so very far the best setup ever, for right below elbow amputee needs (..what was the name of this website again?). There are a range of interlocking and related arguments reasons why I think that, but "smart" in this context for me at least does not start with electronics, or tele-rehabilitation. If anything, I made use of dedicated areas or dedicated domains at home, that I called "dedicated hook zones". How much more analog can things get.
    (C) Copyright Kings Men
  • Consider alternative study designs, such as small-N methodology; Scientific journals should accept and stimulate the submission of small-N papers [1] - Comment: the problem that goes through prosthetic arm research & development like a big thick red thread is that there is a risk that wrong and ill-researched premises lead to strange attempts for research attempts or even a proposed solution. Much more than the problem that a small number of observations are necessarily irrelevant. And remote, detached or ill-networked aspects can be detrimental. For example, word has it, that a researcher that tried to sell their invention, a prosthetic gripper, to a large manufacturer, injured his hand while demonstrating the use of his device, so he even bled from the finger injury. So instead of reducing the N to label it as good research, the quality of content has to be improved - and that is almost impossible without addressing another problem: a rather extensive dialog on eye-level, so to say, between researchers and arm amputees would be necessary, one that avoids treating us like subhuman second-class or vegetative beings. That problem is far from new [e.g., link], but it is far from solved as well. Case studies are not representative of a group, or a population, as logically, a case study usually represents N=1- However, case studies serve a different goal. If the feasibility of a concept is well demonstrated in a case study, then it may become hard or impossible to argue against such feasibility. If a case study shows the validity of a concept that first was regarded as invalid, then the case study may be very important even though only N=1.But studies with a cohort require N>1. For that, maybe, amputees are needed. Maybe there, the researchers may consider to first, treat us like we were humans, then to approach good killer applications and true needs, and last but not the least, then to get quality content as research premise and goal - and very quickly, then, N may become a non-issue.

    (C) Copyright MakeAGif

TIPS on improving the body of research on ULP [upper limb prosthetic] Innovations

  • Strive for a shape of a tall hat instead of a sombrero for the body of ULP [upper limb prosthetic] research; Compose more evidence-based guidelines and systematic reviews; Develop standardized protocols, including a core set of questionnaires, to improve the quality of evidence-based guidelines, systematic reviews, and meta-analyses; Use established reporting guidelines when reporting study results; Base design innovations on theories; Scientific journals should encourage authors to submit theoretical papers; Provide good clinical practice education to all clinical staff [1] - Comment: all research considerations here seem to describe theories, expert opinions, case studies, cohort studies, controlled-clinical studies, randomized controlled trials, systematic reviews and meta-analyses, and then, evidence-based guidelines.At this stage, it is my clear argument that not all of these dutifully listed text-book research methodologies really work to achieve this particular goal of building useful practical solutions for arm amputees.Sometimes, established and accepted methods may fail: a rare gem in scientific publishing with regard to assumedly successful methodology was an article that described that the methods that neuroscientists used to examine and lay open the brain's function were, by and large, so inefficient, that they were also unable to successfully understand a far less complex microprocessor [2]. This would be a nice application of the "review paper" method, where the success of academic authors and prosthetic arm specialists could be evaluated by what technical improvements they actually provided, that then, practically, really and de facto excelled with the users.However, to understand how complicated the field really is, as none of the above-listed protocol approaches ever seemed to have built a great new gripper or defined a new technology that really helped users, different research methods, study types, and topics may be needed. I will get to that, below.
  • Establish a dedicated database to host guidelines and systematic reviews on ULP [upper limb prosthetic] topics [1] - Comment: Regular medical literature databases appear to be sufficient.If a new product or prototype is released, the best way to include that in medical literature may be to write a technical note or case report about it. There are definitely not enough technical notes or case reports about new devices out.Dedicated databases may distract from the real issues, namely, that currently, researchers, for the most part, seem to have no cogent stories to tell, no really good killer solutions to offer. I think that should be worked on first.


  • Rely much less on research on able-bodied persons; In all studies, always include at least some persons with ULD [upper limb difference/deficiency] [1] - Comment: What I also see as a fact, from anecdotal experiences here and there, that increasingly, and as a trend, we (as people with ULD [upper limb deficiency/difference]) may not participate in research studies nearly as much now as in the past, or even less if at all, seems to be a main reason that able-bodied people are used to populate some studies.That is a fascinating aspect of our divided worlds, of our remote planets, of our parallel lives without many intersections, as I described above. Along these lines, I might even have reviewed some of these studies that mainly use able-bodied participants, but I admit that mostly they struck me as rather irrelevant from my very applied practical and truly tech interested view, that I outright dismissed them.Also, I found the direct if not personal interaction with some of these researchers deeply disturbing (while there are notable exceptions) - it did not feel as if one was viewed as an equal human, sometimes even like, at all. So as some of the researchers may truly wish for subjects to serve as their proverbial test rabbits, many of us have learned to duck away or hide or stay away forever - for exactly these reasons.And from a few interactions with other amputees, it did not appear their experiences were always so much different from mine.If a particular research topic seems more or less irrelevant to begin with, I see absolutely nothing wrong with performing such a study with non-disabled people. That study authors call these "healthy" is a different topic.

    (C) Copyright MakeAGif

Patient involvement

  • Include patient perspectives in each research project; Involve patients in each research project from the start of the project [1] - Yes and no. If researchers go about performing qualitative research into just how and why interactions between prosthetic manufacturers, research & development, insurances, prosthetic technicians, and users regularly seem to go awry,  no direct involvement of "patients" seems needed at first. Only a few well-grounded normative ideas may be necessary at first, like, "we expect a prosthesis to be fitted at such an such a level of quality", or, "who earns exactly what percentage of the total price of a prosthetic limb as billed to the user, and how much repair will be necessary from day 1 to actually make it work?" - these things are obvious and can be investigated as is. Also, some technical aspects can be investigated using theory, analysis, and experiments or lab try-outs, such as when building a new prosthetic gripper.
  • Evaluations should be based on opinions of prosthetic users [1] - Depending on the type of study, users or other stakeholders are the key populations to rate or evaluate an outcome.If I want to know how well a new prosthetic hand performs in the "appearance test" (an extremely hard test, that must be passed in order for a prosthetic hand to pass as lifelike from my view) [link], any study population may probably act as evaluation population. If economic aspects of pricing, or cost distribution, are to be addressed, why not ask an economist.
  • Consider qualitative study designs to elucidate patient perspectives [1] - Qualitative study designs are great, but prosthetic arm research seems to have failed real-life use aspects for over 50 years, so patient perspectives should possibly not be the only focus if one wants to trouble-shoot the problems that exist.

    (C) Copyright MakeAGif
  • Have an active attitude in your contacts with patient associations [1] - Maybe to take acting lessons?

    (C) Copyright MakeAGif

TIPS on Spreading of research findings

  • Implementation should be part of each research proposal [1] - It is far more important to have a really relevant research topic, as explained already.If it is an analytic or theoretic subject, it may not need implementation but discussion.If it is an economic study, also, implementation may not be necessary.A technical design may be a great result but the next step may be durability testing, or refinement, not implementation. And some research results should clearly not be implemented rather than implemented - which currently, a totally skewed market and demand economization seems to achieve.

    (C) Copyright MakeAGif
  • Take advantage of the feel-good content of ULP research by attracting media [1] - I am not sure if "feel-good" pertains to all that I, as an arm amputee, feel in the context of what often is pure hype, or if "feel-good", appears to address the faux hope dream world created for the other, disjunct planet where researchers and non-disabled people live. The current reality of academic research on upper limb prosthetic topics, from my view, more feels like a dark dystopia.

    (C) Copyright EMPC
  • Make it a habit to use social media and traditional media [1] - Not sure about that. Many prosthetic arm users, particularly those with bad device experiences, and with long-standing bad device experiences (where we may know what we are talking about), are on social media also to exchange frustration. That frustration can be rather extensive, and understandable, just imagine if you buy a prosthetic hand that costs as much as a house or 2-10 cars or so, and that does not really work: to be really upset is extremely normal. And as that was clear from the outset, as conformance with some related CE-norms could still be subject of discussion [link], we may have at least to consider the existence of an industry and R&D complex that in relation to some ways they perform their work, appears to routinely piss off users, sometimes to an extremely high and rather sustainable degree. If already over ten years ago, some of us users felt like "friends do not let friends wear [insert name of large German manufacturer here])", and if already ten years ago, we would call each other on the telephone, around the globe, or if we then regularly met or interacted, maybe also met for drinks, and if just to keep spirits up in that context, then something is up that is not found in quite the same degree in most other consumer products. There are no "do not buy Volvo" telephone circles that go around the globe to support each other in one's existential crises. I mean if you did not know that, what did you know about the situation of prosthetic limbs, and manufacturers, and customer "care". These manufacturers, after all that was said and done, then als0 may then go out to meet on social media: what do they expect there? Really? Not sure that industry or R&D is really welcome there, or, that they could promote their undiluted agenda there. Why not do a careful subtle and inquisitive qualitative study on that before exaggerating any social media presence. They should consider staying away from social media as far as I see it.|

    (C) Copyright IWDRM
  • Make a dissemination plan at the start of a project [1] - Not all research needs to be disseminated, like, at all. If there is a good collection of experiences, just a review article would be sufficient, or a book chapter every now and then.

    (C) Copyright TriStar / Turman Foster
  • (Inter)national collaboration and a team approach are essential [1] - That depends on the topic. Some topics are best worked out by a single individual. There are individuals, of which I would love 30 articles, whereas I may not even read 1 article of some team elsewhere.

  • Establish shared databases and include each person with an upper limb defect in these databases [1]  - Share data in public data repositories [1] - Create a dedicated ULP data repository [1] - If anything, let everyone and their grandmother access relevant databases. But there also has been research data released that seems irrelevant, to publishing some ill-devised raw data and calling it a day is not cool. Better to analyze the data rather than just making it available.

  • Publish in open access journals [1] - Could be an option, but alternatively, they could just run a cool blog or Youtube website, and make true news available there. And if articles are not Open Access, put a pre-print draft on the research project website, or into University repository.
  • Use conferences as a start of new beginnings [1] - New beginnings may also start totally elsewhere.

More useful research suggestions for better understanding deep divide and built better devices

  • Qualitative studies seem to be needed to examine the cycle of death, that explains how prosthetic arm R&D risks to tank and risks to leave us users standing in the rain , from its current, well established problematic status, and there, the following study populations may be of particular interest:
    • Academic researchers. The question is, why nothing seems to come of it from a user view. Not why only a little but seems to come from it, but, why nothing. I once spent some extensive quality time, trying to learn the attitudes and hopes of academic researchers that worked on upper extremity prosthetic research ideas. It appeared in conversation, that they had zero idea about real life, zero idea about real life prosthetic arm requirements and use, and they were quite disillusioned after that exchange. They said they had been promised that their research would change and impact lives. However, their ideas, as many ideas nowadays, seeemed to be free floating, detached, not without spark or funny aspects but by and large nothing I would take home to test. A qualitative research into the hopes, ideas and motivations of academic researchers that work on prosthetic arm may be relevant just as much as their attitudes, views and opinions about people with upper limb amputations or differences: do they really think that in order to make "us" look or even be "human" ('again'), "we" really "need" a prosthetic hand of any kind? What does that imply about "our" current status according to their view, attitude or opinion? Is it true that academic research into prosthetic hands mostly does not care about real use aspects, and that they only need research money from "disability funds" or such to develop space travel / military gripper solutions?
    • Industrial developers. Where is their understanding of grip mechanics derived from? What experiences do they have, themselves, with wearing prosthetic arms, grippers or hands? What technical options do they know of, how do they update their knowledge? How are they appointed or employed: part time, temporary, or by the hour? Is their work at all credited? How much direct customer feedback to they want, get, or need? How do they connect the CE-label conformance requirements [link] with the actual performance, performance documentation and technical testing and documentation of prosthetic arm components?
    • Industrial / commercial customer service and marketing. Why do representatives of, say, large Icelandic or German or other companies often appear so "reluctant" to address customer needs directly? Is it inability? What did they train? What do they actually know about, e.g., metal joints, wrist connectors, "bionic" hand control and software, etc. - maybe let them sit a fact test? W
    • Prosthetic technicians. Prosthetic technicians are the ones to sell stuff to amputees. How good are their sales tactics, could one make them sit some economy test questions ("if you open a gas station at ... how much money will you make after 6 years if ..."?), could we learn more there? As far as we have to maybe assume, they preferably sell "bionic" hands because they get 30% on all hardware, so how is pricing and insurance compensation a factor? And how would that have to be changed, fixed, adapted, to get better outcomes? How is their attitude towards amputees: why is it, that in local support groups, stories are told about how people are treated at the prosthetic technician center that questions whether they should at all work with people, leave alone a vulnerable group of disabled people? What research is needed to pull underlying attitudes there into the open, how to let them voice their sub-basis narratives?
    • Insurance representatives. What knowledge to insurance representatives have about prosthetic arms, if any? Why did I, for example, have to spend some six weeks trying to get insurance representatives to understand that replacing a prosthetic hand cover, or, a liner, is a routine thing that will happen over and over, and, all the time?
    • Academic article reviewers. How do research article reviewers check prior assumptions, research premises, correctness of citations, to begin with? How do they check possibly outrageous claims of research papers?
    • Physiotherapists, doctors, researchers, prosthetists - How do they feel repulsed by our amputated limbs? In what way does this cause extensive impact on health care that we can expect or actually get? After how many sessions of getting stared at with repulsed faces by physiotherapists will I not go to another session any more? And I am not making that up in the least bit. At least German speaking physiotherapists appeared to have a break-through moment when one editor admitted that amputees do have the capacity to repulse them [quote at top of page, "Kneifen ist nicht", link].
  • For individual user experiences:
    • Relative goals, rather than absolute goals, to narrow down user differences and requirement differences. Does person A perform task 1 or task 2 better without prosthesis, or with prosthesis X1 or X2? What about person B? [link]
    • Hard work resilience of prosthetic arm: does the prosthesis actually deliver under objectively hard constraints such as heavy or repetitive work, or hot or cold ambient temperatures? [link]
  • For societal or perceptive impact of prostheses on others:
    • Normative societal goals that both challenge development and user. The "appearance test" that I devised tests that [link].
    • Theoretical papers. Address the social perception spaces where research goal and actual perceptions diverge, as "bionic hands" may be the ultimate trap as I suggested a while ago [link]. Where is transhumanism stuck? [link] [link]
  • For parts, components, setups:
    • Difficult, relevant goals and hard testing, for device parts [link].
    • Control errors must be in a range of industrially acceptable low level, and if that is not a given, keep the game in the laboratory for time being [link].
    • Gripper geometry should be investigated in full detail [link]. The gripper must be gold before you go on to sell stuff to anyone, get people involved, and so on.
    • Construction and building community - an intact constructive and building team may be very relevant for anyone that wants to walk new paths in terms of better prosthetic grippers.

I welcome the fact that also OANDP Edge finally decided to point towards there being a list of potential research improvements, but really, their analysis and critical revew is not nearly as thorough as this here [link].

[1] C. K. van der Sluis and R. M. Bongers, "TIPS for Scaling up Research in Upper Limb Prosthetics," Prosthesis, vol. 2, iss. 4, pp. 340-351, 2020.
[Bibtex]
@article{van2020tips,
  title={TIPS for Scaling up Research in Upper Limb Prosthetics},
  author={van der Sluis, Corry K and Bongers, Raoul M},
  journal={Prosthesis},
  volume={2},
  number={4},
  pages={340--351},
  year={2020},
  publisher={Multidisciplinary Digital Publishing Institute}
}
[2] E. Jonas and K. P. Kording, "Could a neuroscientist understand a microprocessor?," PLoS computational biology, vol. 13, iss. 1, p. e1005268, 2017.
[Bibtex]
@article{jonas2017could,
  title={Could a neuroscientist understand a microprocessor?},
  author={Jonas, Eric and Kording, Konrad Paul},
  journal={PLoS computational biology},
  volume={13},
  number={1},
  pages={e1005268},
  year={2017},
  publisher={Public Library of Science San Francisco, CA USA}
}

Footnotes

  1. C. K. van der Sluis and R. M. Bongers, "TIPS for Scaling up Research in Upper Limb Prosthetics", Prosthesis, vol. 2, iss. 4, pp. 340-351, 2020.

Cite this article:
Wolf Schweitzer: swisswuff.ch - TIPS for research in prosthetic arms for below elbow amputees [paper review / tips]; published 13/12/2020, 13:51; URL: https://www.swisswuff.ch/tech/?p=11276.

BibTeX: @MISC{schweitzer_wolf_1634852976, author = {Wolf Schweitzer}, title = {{swisswuff.ch - TIPS for research in prosthetic arms for below elbow amputees [paper review / tips]}}, month = {December}, year = {2020}, url = {https://www.swisswuff.ch/tech/?p=11276} }