Because nobody knows probably, and isn't knowledge more of an emergent property anyways? We are committed to observing and exploring that amidst a culture that clings to certainty.
Table of Contents
Overview
The advent of advanced digital technologies is a feature of our global landscape that could facilitate the democratic distribution of scientific exploration, production, and consumption in ways that were once thought to be impossible. However, the universal human right to participate in science, knowledge production, and knowledge application, has been largely sidelined: we typically think or believe that only institutional entities possess the unique intellectual capacities and practical resources that are required to produce epistemic and technological goods. However, buying into this notion–the notion that the means of the production of knowledge is held by an intellectually “elite” few is–firstly, just theoretically flawed–and secondly, in practice, it serves to disproportionately place decision making power and access into the hands of those entities who are more likely to prioritize their own social or economic comfort (which is honestly most people in a hard capitalist society), and therefore are more likely to use their accrual of “knowledge credits” to invest first in their own growth, rather than their cooperative engagement with others and novel propositional ideas. This ultimately undermines the entire scientific enterprise in the sense that the system just perpetuates the inequities and harms that “science” and “technology” are supposed to mitigate. We’re all part of this problem–
(whether we’re the ones fearing we’re not ‘worthy’ of ‘doing science’, or whether we’re the ones agnostically and uncritically consuming whatever knowledge is produced, or whether we’re the ones doing science and thinking that this qualifies us as intellectually unique/superior);
–therefore, we’re all part of minimizing the senseless inequity and harm here.
So what can we structurally alter (at all levels spanning the “individual psychological” to the “sociopolitical” in order to bring about functional change?)
Knowledge Map Visualization | Open Science Projects
“Democratizing Science & Medicine”-Themed Literature
Members of the public are making substantial contributions to science as citizen scientists, and advances in technologies have enabled citizens to make even more substantial contributions. Technologies that allow computers and machines to function in an intelligent manner, often referred to as artificial intelligence (AI), are now being applied in citizen science. Discussions about guidelines, responsibilities, and ethics of AI usage are already happening outside the field of citizen science. We suggest such considerations should also be explored carefully in the context of citizen science applications. To start the conversation, we offer the citizen science community an essay to introduce the state-of-play for AI in citizen science and its potential uses in the future. We begin by presenting a systematic overview of AI technologies currently being applied, highlighting exemplary projects for each technology type described. We then discuss how AI is likely to be increasingly utilised in citizen science into the future, and, through scenarios, we explore both future opportunities and potential risks. Lastly, we conclude by providing recommendations that warrant consideration by the citizen science community, such as developing a data stewardship plan to inform citizens in advance of plans and expected outcomes of using data for AI training, or adopting good practice around anonymity. Our intent is for this essay to lead to further critical discussions among citizen science practitioners, which is needed for responsible, ethical, and useful use of AI in citizen science.
@article{teunisse_human_2019,
title = {Human enhancement through the lens of experimental and speculative neurotechnologies},
volume = {1},
issn = {2578-1863},
url = {https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6919332/},
doi = {10.1002/hbe2.179},
abstract = {Human enhancement deals with improving on and overcoming limitations of the human body and mind. Pharmaceutical compounds that alter consciousness and cognitive performance have been used and discussed for a long time. The prospect of neurotechnological applications such as brain‐steered devices or using invasive and noninvasive electromagnetic stimulations of the human brain, however, has received less attention—especially outside of therapeutic practices—and remains relatively unexplored. Reflection and debates about neurotechnology for human enhancement are limited and remain predominantly with neurotech engineers, science‐fiction enthusiasts and a small circle of academics in the field of neuroethics. It is well known, and described as the Collingridge dilemma, that at an early stage of development, changes can easily be enacted, but the need for changes can hardly be foreseen. Once the technology is entrenched, opportunities and risks start to materialize, and the need to adapt and change is clearly visible. However, carrying out these changes at such a late stage, in turn, becomes very difficult, tremendously expensive, and sometimes practically impossible. In this manuscript, we compile and categorize an overview of existing experimental and speculative applications of neurotechnologies, with the aim to find out, if these real or diegetic prototypes could be used to better understand the paths these applications are forging. In particular, we will investigate what kind of tools, motivations, and normative goals underpin experimental implementations by neurohackers, speculative designers and artists.},
number = {4},
urldate = {2020-06-01},
journal = {Human Behavior and Emerging Technologies},
author = {Teunisse, Wessel and Youssef, Sandra and Schmidt, Markus},
month = oct,
year = {2019},
pmid = {31894206},
pmcid = {PMC6919332},
pages = {361--372},
}
Human enhancement deals with improving on and overcoming limitations of the human body and mind. Pharmaceutical compounds that alter consciousness and cognitive performance have been used and discussed for a long time. The prospect of neurotechnological applications such as brain‐steered devices or using invasive and noninvasive electromagnetic stimulations of the human brain, however, has received less attention—especially outside of therapeutic practices—and remains relatively unexplored. Reflection and debates about neurotechnology for human enhancement are limited and remain predominantly with neurotech engineers, science‐fiction enthusiasts and a small circle of academics in the field of neuroethics. It is well known, and described as the Collingridge dilemma, that at an early stage of development, changes can easily be enacted, but the need for changes can hardly be foreseen. Once the technology is entrenched, opportunities and risks start to materialize, and the need to adapt and change is clearly visible. However, carrying out these changes at such a late stage, in turn, becomes very difficult, tremendously expensive, and sometimes practically impossible. In this manuscript, we compile and categorize an overview of existing experimental and speculative applications of neurotechnologies, with the aim to find out, if these real or diegetic prototypes could be used to better understand the paths these applications are forging. In particular, we will investigate what kind of tools, motivations, and normative goals underpin experimental implementations by neurohackers, speculative designers and artists.
@article{ryff_entrepreneurship_2019,
title = {Entrepreneurship and eudaimonic well-being: {Five} venues for new science},
volume = {34},
issn = {08839026},
shorttitle = {Entrepreneurship and eudaimonic well-being},
url = {https://linkinghub.elsevier.com/retrieve/pii/S0883902617307899},
doi = {10.1016/j.jbusvent.2018.09.003},
abstract = {Researchers in entrepreneurial studies are increasingly interested in the psychological well-being of entrepreneurs. Approaches to well-being tend to be partitioned into hedonic and eudaimonic formulations. Most entrepreneurial studies have focused on hedonic indicators (life satisfaction, happiness, positive affect). The central objective of this essay is to examine the relevance of eudaimonic well-being for understanding entrepreneurial experience. The theoretical background and key dimensions of eudaimonic well-being are described and their relevance for entrepreneurial studies is considered. Illustrative findings from prior well-being studies are examined, also with emphasis on possible extensions to entrepreneurship. Five key venues for the entrepreneurial field are then considered: (1) entrepreneurship and autonomy, viewed both as a motive (self-determination theory) and as an aspect of well-being (eudaimonic well-being theory); (2) varieties of entrepreneurship (opportunity versus necessity) and eudaimonic wellbeing; (3) eudaimonia in the entrepreneurial journey (beginning, middle, end); (4) entrepreneurship, well-being and health; and (5) entrepreneurs and the eudaimonia of others –contrasting virtuous and vicious types. In each topic, extant findings from entrepreneurial studies are considered and new research directions proposed. The overall aim is to be generative regarding the interplay between entrepreneurial experience and eudaimonic well-being.},
language = {en},
number = {4},
urldate = {2020-04-02},
journal = {Journal of Business Venturing},
author = {Ryff, Carol D.},
month = jul,
year = {2019},
note = {ZSCC: 0000013},
pages = {646--663},
}
Researchers in entrepreneurial studies are increasingly interested in the psychological well-being of entrepreneurs. Approaches to well-being tend to be partitioned into hedonic and eudaimonic formulations. Most entrepreneurial studies have focused on hedonic indicators (life satisfaction, happiness, positive affect). The central objective of this essay is to examine the relevance of eudaimonic well-being for understanding entrepreneurial experience. The theoretical background and key dimensions of eudaimonic well-being are described and their relevance for entrepreneurial studies is considered. Illustrative findings from prior well-being studies are examined, also with emphasis on possible extensions to entrepreneurship. Five key venues for the entrepreneurial field are then considered: (1) entrepreneurship and autonomy, viewed both as a motive (self-determination theory) and as an aspect of well-being (eudaimonic well-being theory); (2) varieties of entrepreneurship (opportunity versus necessity) and eudaimonic wellbeing; (3) eudaimonia in the entrepreneurial journey (beginning, middle, end); (4) entrepreneurship, well-being and health; and (5) entrepreneurs and the eudaimonia of others –contrasting virtuous and vicious types. In each topic, extant findings from entrepreneurial studies are considered and new research directions proposed. The overall aim is to be generative regarding the interplay between entrepreneurial experience and eudaimonic well-being.
@article{thomas_potential_2019,
title = {Potential {Applications} of {Digital} {Technology} in {Assessment}, {Treatment}, and {Self}-help for {Hallucinations}},
volume = {45},
issn = {0586-7614, 1745-1701},
url = {https://academic.oup.com/schizophreniabulletin/article/45/Supplement_1/S32/5305655},
doi = {10.1093/schbul/sby103},
language = {en},
number = {Supplement\_1},
urldate = {2020-04-02},
journal = {Schizophrenia Bulletin},
author = {Thomas, Neil and Bless, Josef J and Alderson-Day, Ben and Bell, Imogen H and Cella, Matteo and Craig, Tom and Delespaul, Philippe and Hugdahl, Kenneth and Laloyaux, Julien and Larøi, Frank and Lincoln, Tania M and Schlier, Björn and Urwyler, Prabitha and van den Berg, David and Jardri, Renaud},
month = feb,
year = {2019},
note = {ZSCC: NoCitationData[s0]},
pages = {S32--S42},
}
@misc{staff_patient-driven_2017,
title = {Patient-{Driven} {Medical} {Innovations}: {Building} a {Precision} {Medicine} {Supply} {Chain} for {All}},
shorttitle = {Patient-{Driven} {Medical} {Innovations}},
url = {https://blog.petrieflom.law.harvard.edu/2017/03/06/patient-driven-medical-innovations-building-a-precision-medicine-supply-chain-for-all/},
abstract = {Kingshuk K. Sinha, PhD (Department Chair and Mosaic Company-Jim Prokopanko Professor of Corporate Responsibility Supply Chain and Operations Department, Carlson School of Management, University of Minnesota) This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the […]},
language = {en-US},
urldate = {2021-03-17},
journal = {Bill of Health},
author = {Staff, The Petrie-Flom Center},
month = mar,
year = {2017},
note = {ZSCC: NoCitationData[s0]},
}
Kingshuk K. Sinha, PhD (Department Chair and Mosaic Company-Jim Prokopanko Professor of Corporate Responsibility Supply Chain and Operations Department, Carlson School of Management, University of Minnesota) This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the […]
@article{wildschut_need_2017,
series = {Post-{Normal} science in practice},
title = {The need for citizen science in the transition to a sustainable peer-to-peer-society},
volume = {91},
issn = {0016-3287},
url = {http://www.sciencedirect.com/science/article/pii/S0016328717300435},
doi = {10.1016/j.futures.2016.11.010},
abstract = {Society is changing towards a peer-to-peer society that is characterised by a new way to produce things, ranging from software to food, to cities, to scientific knowledge. This requires a new role for science. Instead of focusing on knowledge production for NGO's, governments and business, scientists should become aware that the citizen will be the new decision-maker in a future peer-to-peer (p2p) society, and produce suitable and accessible knowledge, and work together with citizen scientists.},
language = {en},
urldate = {2020-06-05},
journal = {Futures},
author = {Wildschut, Diana},
month = aug,
year = {2017},
note = {ZSCC: 0000031},
pages = {46--52},
}
Society is changing towards a peer-to-peer society that is characterised by a new way to produce things, ranging from software to food, to cities, to scientific knowledge. This requires a new role for science. Instead of focusing on knowledge production for NGO's, governments and business, scientists should become aware that the citizen will be the new decision-maker in a future peer-to-peer (p2p) society, and produce suitable and accessible knowledge, and work together with citizen scientists.
@inproceedings{meissner_-it-yourself_2017,
address = {Edinburgh, United Kingdom},
title = {Do-{It}-{Yourself} {Empowerment} as {Experienced} by {Novice} {Makers} with {Disabilities}},
isbn = {978-1-4503-4922-2},
url = {http://dl.acm.org/citation.cfm?doid=3064663.3064674},
doi = {10.1145/3064663.3064674},
abstract = {Recent HCI research has highlighted the potential afforded by maker technologies for supporting new forms of DIY Assistive Technology (DIY-AT) for people with disabilities. Furthermore, the popular discourse surrounding both the maker movement and disability is one of democratisation and empowerment. Despite this, critics argue that maker movement membership lacks diversity and that within DIY-AT, it is seldom the people with disabilities who are creating such designs. We conducted a qualitative study that explored how people with disabilities experience the empowering potential of making. We analysed online videos by makers with disabilities and conducted fieldwork at two makerspaces. These informed the design of DIY-Abilities, a series of workshops for people with disabilities in which participants could learn different maker technologies and complete their own maker project. Through analysis of participants’ narratives we contribute a new perspective on the specific social and material capacities of accessible maker initiatives.},
language = {en},
urldate = {2020-03-19},
booktitle = {Proceedings of the 2017 {Conference} on {Designing} {Interactive} {Systems} - {DIS} '17},
publisher = {ACM Press},
author = {Meissner, Janis Lena and Vines, John and McLaughlin, Janice and Nappey, Thomas and Maksimova, Jekaterina and Wright, Peter},
year = {2017},
pages = {1053--1065},
}
Recent HCI research has highlighted the potential afforded by maker technologies for supporting new forms of DIY Assistive Technology (DIY-AT) for people with disabilities. Furthermore, the popular discourse surrounding both the maker movement and disability is one of democratisation and empowerment. Despite this, critics argue that maker movement membership lacks diversity and that within DIY-AT, it is seldom the people with disabilities who are creating such designs. We conducted a qualitative study that explored how people with disabilities experience the empowering potential of making. We analysed online videos by makers with disabilities and conducted fieldwork at two makerspaces. These informed the design of DIY-Abilities, a series of workshops for people with disabilities in which participants could learn different maker technologies and complete their own maker project. Through analysis of participants’ narratives we contribute a new perspective on the specific social and material capacities of accessible maker initiatives.
@article{swan_quantified_2013,
title = {The {Quantified} {Self}: {Fundamental} {Disruption} in {Big} {Data} {Science} and {Biological} {Discovery}},
volume = {1},
issn = {2167-6461, 2167-647X},
shorttitle = {The {Quantified} {Self}},
url = {http://www.liebertpub.com/doi/10.1089/big.2012.0002},
doi = {10.1089/big.2012.0002},
abstract = {A key contemporary trend emerging in big data science is the quantified self (QS)–individuals engaged in the selftracking of any kind of biological, physical, behavioral, or environmental information as n = 1 individuals or in groups. There are opportunities for big data scientists to develop new models to support QS data collection, integration, and analysis, and also to lead in defining open-access database resources and privacy standards for how personal data is used. Next-generation QS applications could include tools for rendering QS data meaningful in behavior change, establishing baselines and variability in objective metrics, applying new kinds of pattern recognition techniques, and aggregating multiple self-tracking data streams from wearable electronics, biosensors, mobile phones, genomic data, and cloud-based services. The long-term vision of QS activity is that of a systemic monitoring approach where an individual’s continuous personal information climate provides real-time performance optimization suggestions. There are some potential limitations related to QS activity—barriers to widespread adoption and a critique regarding scientific soundness—but these may be overcome. One interesting aspect of QS activity is that it is fundamentally a quantitative and qualitative phenomenon since it includes both the collection of objective metrics data and the subjective experience of the impact of these data. Some of this dynamic is being explored as the quantified self is becoming the qualified self in two new ways: by applying QS methods to the tracking of qualitative phenomena such as mood, and by understanding that QS data collection is just the first step in creating qualitative feedback loops for behavior change. In the long-term future, the quantified self may become additionally transformed into the extended exoself as data quantification and self-tracking enable the development of new sense capabilities that are not possible with ordinary senses. The individual body becomes a more knowable, calculable, and administrable object through QS activity, and individuals have an increasingly intimate relationship with data as it mediates the experience of reality.},
language = {en},
number = {2},
urldate = {2020-06-05},
journal = {Big Data},
author = {Swan, Melanie},
month = jun,
year = {2013},
note = {ZSCC: 0000833},
pages = {85--99},
}
A key contemporary trend emerging in big data science is the quantified self (QS)–individuals engaged in the selftracking of any kind of biological, physical, behavioral, or environmental information as n = 1 individuals or in groups. There are opportunities for big data scientists to develop new models to support QS data collection, integration, and analysis, and also to lead in defining open-access database resources and privacy standards for how personal data is used. Next-generation QS applications could include tools for rendering QS data meaningful in behavior change, establishing baselines and variability in objective metrics, applying new kinds of pattern recognition techniques, and aggregating multiple self-tracking data streams from wearable electronics, biosensors, mobile phones, genomic data, and cloud-based services. The long-term vision of QS activity is that of a systemic monitoring approach where an individual’s continuous personal information climate provides real-time performance optimization suggestions. There are some potential limitations related to QS activity—barriers to widespread adoption and a critique regarding scientific soundness—but these may be overcome. One interesting aspect of QS activity is that it is fundamentally a quantitative and qualitative phenomenon since it includes both the collection of objective metrics data and the subjective experience of the impact of these data. Some of this dynamic is being explored as the quantified self is becoming the qualified self in two new ways: by applying QS methods to the tracking of qualitative phenomena such as mood, and by understanding that QS data collection is just the first step in creating qualitative feedback loops for behavior change. In the long-term future, the quantified self may become additionally transformed into the extended exoself as data quantification and self-tracking enable the development of new sense capabilities that are not possible with ordinary senses. The individual body becomes a more knowable, calculable, and administrable object through QS activity, and individuals have an increasingly intimate relationship with data as it mediates the experience of reality.
@misc{noauthor_partners_2012,
title = {Partners \& {Organizational} {Supporters} {\textbar} {Society} for {Participatory} {Medicine}},
url = {https://participatorymedicine.org/organizational-supporters-partners/},
abstract = {Our founding grant and additional annual support generously provided by: Bronze Organizational Members 2019 Event Sponsor Members American College of Radiology Kairos PatientsLikeMe Salem Oaks Additional 2019 Sponsors Inspire Psych Central Helping people make smarter healthcare choices WEGO Health Backpack Health […]},
language = {en-US},
urldate = {2021-03-17},
month = sep,
year = {2012},
}
Our founding grant and additional annual support generously provided by: Bronze Organizational Members 2019 Event Sponsor Members American College of Radiology Kairos PatientsLikeMe Salem Oaks Additional 2019 Sponsors Inspire Psych Central Helping people make smarter healthcare choices WEGO Health Backpack Health […]
@article{swan_crowdsourced_2012,
title = {Crowdsourced {Health} {Research} {Studies}: {An} {Important} {Emerging} {Complement} to {Clinical} {Trials} in the {Public} {Health} {Research} {Ecosystem}},
volume = {14},
shorttitle = {Crowdsourced {Health} {Research} {Studies}},
url = {https://www.jmir.org/2012/2/e46/},
doi = {10.2196/jmir.1988},
abstract = {Background: Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns. Objective: The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies. Methods: Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites. Results: Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor. Conclusions: Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research. [J Med Internet Res 2012;14(2):e46]},
language = {en},
number = {2},
urldate = {2020-03-23},
journal = {Journal of Medical Internet Research},
author = {Swan, Melanie},
year = {2012},
note = {Company: Journal of Medical Internet Research
Distributor: Journal of Medical Internet Research
Institution: Journal of Medical Internet Research
Label: Journal of Medical Internet Research
Publisher: JMIR Publications Inc., Toronto, Canada},
pages = {e46},
}
Background: Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns. Objective: The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies. Methods: Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites. Results: Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor. Conclusions: Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research. [J Med Internet Res 2012;14(2):e46]
@article{hotze_identifying_2011,
title = {Identifying the {Challenges} in {Community}-{Based} {Participatory} {Research} {Collaboration}},
volume = {13},
issn = {2376-6980},
url = {https://journalofethics.ama-assn.org/article/identifying-challenges-community-based-participatory-research-collaboration/2011-02},
doi = {10.1001/virtualmentor.2011.13.2.jdsc2-1102},
abstract = {Ross LF, Loup A, Nelson RM, et al. The challenges of collaboration for academic and community partners in a research partnership: points to consider. J Empir Res Hum Res Ethics. 2010;5(1):19-31.},
number = {2},
urldate = {2021-04-10},
journal = {AMA Journal of Ethics},
author = {Hotze, Timothy},
month = feb,
year = {2011},
note = {ZSCC: 0000009
Publisher: American Medical Association},
pages = {105--108},
}
Ross LF, Loup A, Nelson RM, et al. The challenges of collaboration for academic and community partners in a research partnership: points to consider. J Empir Res Hum Res Ethics. 2010;5(1):19-31.
@article{de_couvreur_design_2011,
title = {\textit{{Design} for (every)one} : co-creation as a bridge between universal design and rehabilitation engineering},
volume = {7},
issn = {1571-0882, 1745-3755},
shorttitle = {\textit{{Design} for (every)one}},
url = {http://www.tandfonline.com/doi/abs/10.1080/15710882.2011.609890},
doi = {10.1080/15710882.2011.609890},
abstract = {In this paper the authors describe a general framework for co-designing assistive devices in a horizontal user innovation network [1] by and for disabled users. This framework attempts to identify, share and use “hidden solutions” in rehabilitation contexts and translate them into disruptive assistive devices build with local resources. Within healthcare contexts local solutions are frequently more effective, as they reflect the physical, emotional and cognitive needs of specific patients and engage all the stakeholders in a specific local context. By using an open horizontal innovation network, where assistive devices can be easily shared and physically hacked by other paramedics, general patterns can be detected and translated into standard universal design objects. This generative design thinking approach [2] is more than feasible with digital trends like crowd sourcing, user-generated content and peer production [3]. Cheap and powerful prototyping tools have become easier to use by non-engineers; it turns them into users as well as self manufactures [4]. We discuss the different aspects of this open innovation process within a „design for disability‟ context and suggest the first steps of an iterative codesign methodology bringing together professional designers, occupational therapists and patients. In this paper the authors sketch the holistic framework which starts with the innovation development and the cocreation process between these disciplines.},
language = {en},
number = {2},
urldate = {2020-03-20},
journal = {CoDesign},
author = {De Couvreur, Lieven and Goossens, Richard},
month = jun,
year = {2011},
pages = {107--121},
}
In this paper the authors describe a general framework for co-designing assistive devices in a horizontal user innovation network [1] by and for disabled users. This framework attempts to identify, share and use “hidden solutions” in rehabilitation contexts and translate them into disruptive assistive devices build with local resources. Within healthcare contexts local solutions are frequently more effective, as they reflect the physical, emotional and cognitive needs of specific patients and engage all the stakeholders in a specific local context. By using an open horizontal innovation network, where assistive devices can be easily shared and physically hacked by other paramedics, general patterns can be detected and translated into standard universal design objects. This generative design thinking approach [2] is more than feasible with digital trends like crowd sourcing, user-generated content and peer production [3]. Cheap and powerful prototyping tools have become easier to use by non-engineers; it turns them into users as well as self manufactures [4]. We discuss the different aspects of this open innovation process within a „design for disability‟ context and suggest the first steps of an iterative codesign methodology bringing together professional designers, occupational therapists and patients. In this paper the authors sketch the holistic framework which starts with the innovation development and the cocreation process between these disciplines.
@misc{maps_open_nodate,
title = {Open {Knowledge} {Maps} - {A} visual interface to the world's scientific knowledge},
url = {https://openknowledgemaps.org/},
abstract = {Start your literature search here: get an overview of a research topic, find relevant papers, and identify important concepts.},
language = {en},
urldate = {2021-03-17},
journal = {Open Knowledge Maps},
author = {Maps, Open Knowledge},
note = {ZSCC: 0000001},
}
Start your literature search here: get an overview of a research topic, find relevant papers, and identify important concepts.
@misc{noauthor_what_nodate,
title = {What is {Citizen} {Science}},
url = {https://scistarter.org/citizen-science},
abstract = {SciStarter connects people to citizen science projects, citizen scientists, and resources. Real science we can do together.},
urldate = {2020-06-05},
journal = {SciStarter},
note = {Library Catalog: scistarter.org},
}
SciStarter connects people to citizen science projects, citizen scientists, and resources. Real science we can do together.
@article{meddings_service_nodate,
title = {From {Service} {User} to {Student} – {The} {Benefits} of {Recovery} {College}},
language = {en},
author = {Meddings, Sara and Campbell, Emogen and Guglietti, Shannon and Lambe, Hazel and Locks, Lucy and Byrne, Diana and Whittington, Adrian},
note = {ZSCC: 0000028},
pages = {9},
}
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