Democratizing Science & Medicine

Overview

The advent of advanced digital technologies is a feature of our global landscape that could facilitate the democratic distribution of opportunities for scientific exploration, knowledge production, and consumption in ways that were once thought to be impossible. However, the universal human right to participate in science and engineering 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 uncapped social or economic growth (which is honestly most people in a hard capitalist society), and therefore are more likely to use their accrual of “knowledge credits” to feed desires that serve them as individuals, rather than desires that involve the cooperative engagement with others, novel propositional ideas, and solution focused ventures. 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

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  2020 (1)
Elevating the human experience (HX) through service research collaborations: introducing ServCollab. Fisk, R. P.; Alkire (née Nasr), L.; Anderson, L.; Bowen, D. E.; Gruber, T.; Ostrom, A. L.; and Patrício, L. Journal of Service Management, 31(4): 615–635. May 2020. ZSCC: NoCitationData[s0]
Paper   doi   link   bibtex   abstract  
@article{fisk_elevating_2020,
	title = {Elevating the human experience ({HX}) through service research collaborations: introducing {ServCollab}},
	volume = {31},
	issn = {1757-5818},
	shorttitle = {Elevating the human experience ({HX}) through service research collaborations},
	url = {https://www.emerald.com/insight/content/doi/10.1108/JOSM-10-2019-0325/full/html},
	doi = {10.1108/JOSM-10-2019-0325},
	abstract = {Purpose
              Elevating the human experience (HX) through research collaborations is the purpose of this article. ServCollab facilitates and supports service research collaborations that seek to reduce human suffering and improve human well-being.
            
            
              Design/methodology/approach
              To catalyze this initiative, the authors introduce ServCollab's three human rights goals (serve, enable and transform), standards of justice for serving humanity (distributive, procedural and interactional justice) and research approaches for serving humanity (service design and community action research).
            
            
              Research implications
              ServCollab seeks to advance the service research field via large-scale service research projects that pursue theory building, research and action. Service inclusion is the first focus of ServCollab and is illustrated through two projects (transformative refugee services and virtual assistants in social care). This paper seeks to encourage collaboration in more large-scale service research projects that elevate the HX.
            
            
              Practical implications
              ServCollab seeks to raise the aspirations of service researchers, expand the skills of service research teams and build mutually collaborative service research approaches that transform human lives.
            
            
              Originality/value
              ServCollab is a unique organization within the burgeoning service research community. By collaborating with service researchers, with service research centers, with universities, with nonprofit agencies and with foundations, ServCollab will build research capacity to address large-scale human service system problems. ServCollab takes a broad perspective for serving humanity by focusing on the HX. Current business research focuses on the interactive roles of customer experience and employee experience. From the perspective of HX, such role labels are insufficient concepts for the full spectrum of human life.},
	language = {en},
	number = {4},
	urldate = {2021-06-21},
	journal = {Journal of Service Management},
	author = {Fisk, Raymond P. and Alkire (née Nasr), Linda and Anderson, Laurel and Bowen, David E. and Gruber, Thorsten and Ostrom, Amy L. and Patrício, Lia},
	month = may,
	year = {2020},
	note = {ZSCC: NoCitationData[s0]},
	pages = {615--635},
}

Purpose Elevating the human experience (HX) through research collaborations is the purpose of this article. ServCollab facilitates and supports service research collaborations that seek to reduce human suffering and improve human well-being. Design/methodology/approach To catalyze this initiative, the authors introduce ServCollab's three human rights goals (serve, enable and transform), standards of justice for serving humanity (distributive, procedural and interactional justice) and research approaches for serving humanity (service design and community action research). Research implications ServCollab seeks to advance the service research field via large-scale service research projects that pursue theory building, research and action. Service inclusion is the first focus of ServCollab and is illustrated through two projects (transformative refugee services and virtual assistants in social care). This paper seeks to encourage collaboration in more large-scale service research projects that elevate the HX. Practical implications ServCollab seeks to raise the aspirations of service researchers, expand the skills of service research teams and build mutually collaborative service research approaches that transform human lives. Originality/value ServCollab is a unique organization within the burgeoning service research community. By collaborating with service researchers, with service research centers, with universities, with nonprofit agencies and with foundations, ServCollab will build research capacity to address large-scale human service system problems. ServCollab takes a broad perspective for serving humanity by focusing on the HX. Current business research focuses on the interactive roles of customer experience and employee experience. From the perspective of HX, such role labels are insufficient concepts for the full spectrum of human life.
  2019 (5)
Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Greenhalgh, T.; Hinton, L.; Finlay, T.; Macfarlane, A.; Fahy, N.; Clyde, B.; and Chant, A. Health Expectations, 22(4): 785–801. 2019. _eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12888
Paper   doi   link   bibtex   abstract  
@article{greenhalgh_frameworks_2019,
	title = {Frameworks for supporting patient and public involvement in research: {Systematic} review and co-design pilot},
	volume = {22},
	issn = {1369-7625},
	shorttitle = {Frameworks for supporting patient and public involvement in research},
	url = {https://onlinelibrary.wiley.com/doi/abs/10.1111/hex.12888},
	doi = {10.1111/hex.12888},
	abstract = {Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a “build your own framework” co-design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.},
	language = {en},
	number = {4},
	urldate = {2021-07-12},
	journal = {Health Expectations},
	author = {Greenhalgh, Trisha and Hinton, Lisa and Finlay, Teresa and Macfarlane, Alastair and Fahy, Nick and Clyde, Ben and Chant, Alan},
	year = {2019},
	note = {\_eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12888},
	keywords = {codesign, framework, hermeneutic review, patient and public involvement, systematic review},
	pages = {785--801},
}

Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a “build your own framework” co-design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.
Opportunities and Risks for Citizen Science in the Age of Artificial Intelligence. Ceccaroni, L.; Bibby, J.; Roger, E.; Flemons, P.; Michael, K.; Fagan, L.; and Oliver, J. L. Citizen Science: Theory and Practice, 4(1): 29. November 2019. ZSCC: 0000003 Number: 1 Publisher: Ubiquity Press
Paper   doi   link   bibtex   abstract  
@article{ceccaroni_opportunities_2019,
	title = {Opportunities and {Risks} for {Citizen} {Science} in the {Age} of {Artificial} {Intelligence}},
	volume = {4},
	copyright = {Authors who publish with this journal agree to the following terms:    Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a  Creative Commons Attribution License  that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.  Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.  Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See  The Effect of Open Access ).  All third-party images reproduced on this journal are shared under Educational Fair Use. For more information on  Educational Fair Use , please see  this useful checklist prepared by Columbia University Libraries .   All copyright  of third-party content posted here for research purposes belongs to its original owners.  Unless otherwise stated all references to characters and comic art presented on this journal are ©, ® or ™ of their respective owners. No challenge to any owner’s rights is intended or should be inferred.},
	issn = {2057-4991},
	url = {http://theoryandpractice.citizenscienceassociation.org/articles/10.5334/cstp.241/},
	doi = {10.5334/cstp.241},
	abstract = {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.},
	language = {en},
	number = {1},
	urldate = {2020-06-05},
	journal = {Citizen Science: Theory and Practice},
	author = {Ceccaroni, Luigi and Bibby, James and Roger, Erin and Flemons, Paul and Michael, Katina and Fagan, Laura and Oliver, Jessica L.},
	month = nov,
	year = {2019},
	note = {ZSCC: 0000003 
Number: 1
Publisher: Ubiquity Press},
	pages = {29},
}

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.
Human enhancement through the lens of experimental and speculative neurotechnologies. Teunisse, W.; Youssef, S.; and Schmidt, M. Human Behavior and Emerging Technologies, 1(4): 361–372. October 2019.
Paper   doi   link   bibtex   abstract  
@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.
Entrepreneurship and eudaimonic well-being: Five venues for new science. Ryff, C. D. Journal of Business Venturing, 34(4): 646–663. July 2019. ZSCC: 0000013
Paper   doi   link   bibtex   abstract  
@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.
Potential Applications of Digital Technology in Assessment, Treatment, and Self-help for Hallucinations. Thomas, N.; Bless, J. J; Alderson-Day, B.; Bell, I. H; Cella, M.; Craig, T.; Delespaul, P.; Hugdahl, K.; Laloyaux, J.; Larøi, F.; Lincoln, T. M; Schlier, B.; Urwyler, P.; van den Berg, D.; and Jardri, R. Schizophrenia Bulletin, 45(Supplement_1): S32–S42. February 2019. ZSCC: NoCitationData[s0]
Paper   doi   link   bibtex  
@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},
}

  2018 (1)
Multidimensional Connectomics and Treatment-Resistant Schizophrenia: Linking Phenotypic Circuits to Targeted Therapeutics. MacKay, M. B.; Paylor, J. W.; Wong, J. T. F.; Winship, I. R.; Baker, G. B.; and Dursun, S. M. Frontiers in Psychiatry, 9. October 2018. ZSCC: 0000006
Paper   doi   link   bibtex   abstract  
@article{mackay_multidimensional_2018,
	title = {Multidimensional {Connectomics} and {Treatment}-{Resistant} {Schizophrenia}: {Linking} {Phenotypic} {Circuits} to {Targeted} {Therapeutics}},
	volume = {9},
	issn = {1664-0640},
	shorttitle = {Multidimensional {Connectomics} and {Treatment}-{Resistant} {Schizophrenia}},
	url = {https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6218602/},
	doi = {10.3389/fpsyt.2018.00537},
	abstract = {Schizophrenia is a very complex syndrome that involves widespread brain multi-dysconnectivity. Neural circuits within specific brain regions and their links to corresponding regions are abnormal in the illness. Theoretical models of dysconnectivity and the investigation of connectomics and brain network organization have been examined in schizophrenia since the early nineteenth century. In more recent years, advancements have been achieved with the development of neuroimaging tools that have provided further clues to the structural and functional organization of the brain and global neural networks in the illness. Neural circuitry that extends across prefrontal, temporal and parietal areas of the cortex as well as limbic and other subcortical brain regions is disrupted in schizophrenia. As a result, many patients have a poor response to antipsychotic treatment and treatment failure is common. Treatment resistance that is specific to positive, negative, and cognitive domains of the illness may be related to distinct circuit phenotypes unique to treatment-refractory disease. Currently, there are no customized neural circuit-specific and targeted therapies that address this neural dysconnectivity. Investigation of targeted therapeutics that addresses particular areas of substantial regional dysconnectivity is an intriguing approach to precision medicine in schizophrenia. This review examines current findings of system and circuit-level brain dysconnectivity in treatment-resistant schizophrenia based on neuroimaging studies. Within a connectome context, on-off circuit connectivity synonymous with excitatory and inhibitory neuronal pathways is discussed. Mechanistic cellular, neurochemical and molecular studies are included with specific emphasis given to cell pathology and synaptic communication in glutamatergic and GABAergic systems. In this review we attempt to deconstruct how augmenting treatments may be applied within a circuit context to improve circuit integration and treatment response. Clinical studies that have used a variety of glutamate receptor and GABA interneuron modulators, nitric oxide-based therapies and a variety of other strategies as augmenting treatments with antipsychotic drugs are included. This review supports the idea that the methodical mapping of system-level networks to both on (excitatory) and off (inhibitory) cellular circuits specific to treatment-resistant disease may be a logical and productive approach in directing future research toward the advancement of targeted pharmacotherapeutics in schizophrenia.},
	urldate = {2021-06-16},
	journal = {Frontiers in Psychiatry},
	author = {MacKay, Mary-Anne B. and Paylor, John W. and Wong, James T. F. and Winship, Ian R. and Baker, Glen B. and Dursun, Serdar M.},
	month = oct,
	year = {2018},
	pmid = {30425662},
	pmcid = {PMC6218602},
	note = {ZSCC: 0000006 },
}

Schizophrenia is a very complex syndrome that involves widespread brain multi-dysconnectivity. Neural circuits within specific brain regions and their links to corresponding regions are abnormal in the illness. Theoretical models of dysconnectivity and the investigation of connectomics and brain network organization have been examined in schizophrenia since the early nineteenth century. In more recent years, advancements have been achieved with the development of neuroimaging tools that have provided further clues to the structural and functional organization of the brain and global neural networks in the illness. Neural circuitry that extends across prefrontal, temporal and parietal areas of the cortex as well as limbic and other subcortical brain regions is disrupted in schizophrenia. As a result, many patients have a poor response to antipsychotic treatment and treatment failure is common. Treatment resistance that is specific to positive, negative, and cognitive domains of the illness may be related to distinct circuit phenotypes unique to treatment-refractory disease. Currently, there are no customized neural circuit-specific and targeted therapies that address this neural dysconnectivity. Investigation of targeted therapeutics that addresses particular areas of substantial regional dysconnectivity is an intriguing approach to precision medicine in schizophrenia. This review examines current findings of system and circuit-level brain dysconnectivity in treatment-resistant schizophrenia based on neuroimaging studies. Within a connectome context, on-off circuit connectivity synonymous with excitatory and inhibitory neuronal pathways is discussed. Mechanistic cellular, neurochemical and molecular studies are included with specific emphasis given to cell pathology and synaptic communication in glutamatergic and GABAergic systems. In this review we attempt to deconstruct how augmenting treatments may be applied within a circuit context to improve circuit integration and treatment response. Clinical studies that have used a variety of glutamate receptor and GABA interneuron modulators, nitric oxide-based therapies and a variety of other strategies as augmenting treatments with antipsychotic drugs are included. This review supports the idea that the methodical mapping of system-level networks to both on (excitatory) and off (inhibitory) cellular circuits specific to treatment-resistant disease may be a logical and productive approach in directing future research toward the advancement of targeted pharmacotherapeutics in schizophrenia.
  2017 (5)
OPEN DATA FOR DISCOVERY SCIENCE. Payne, P. R. O.; Huang, K.; Shah, N. H.; and Tenenbaum, J. Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing, 22: 649–652. 2017. ZSCC: 0000001
doi   link   bibtex   abstract  
@article{payne_open_2017,
	title = {{OPEN} {DATA} {FOR} {DISCOVERY} {SCIENCE}},
	volume = {22},
	issn = {2335-6936},
	doi = {10.1142/9789813207813_0061},
	abstract = {The modern healthcare and life sciences ecosystem is moving towards an increasingly open and data-centric approach to discovery science. This evolving paradigm is predicated on a complex set of information needs related to our collective ability to share, discover, reuse, integrate, and analyze open biological, clinical, and population level data resources of varying composition, granularity, and syntactic or semantic consistency. Such an evolution is further impacted by a concomitant growth in the size of data sets that can and should be employed for both hypothesis discovery and testing. When such open data can be accessed and employed for discovery purposes, a broad spectrum of high impact end-points is made possible. These span the spectrum from identification of de novo biomarker complexes that can inform precision medicine, to the repositioning or repurposing of extant agents for new and cost-effective therapies, to the assessment of population level influences on disease and wellness. Of note, these types of uses of open data can be either primary, wherein open data is the substantive basis for inquiry, or secondary, wherein open data is used to augment or enrich project-specific or proprietary data that is not open in and of itself. This workshop is concerned with the key challenges, opportunities, and methodological best practices whereby open data can be used to drive the advancement of discovery science in all of the aforementioned capacities.},
	language = {eng},
	journal = {Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing},
	author = {Payne, Philip R. O. and Huang, Kun and Shah, Nigam H. and Tenenbaum, Jessica},
	year = {2017},
	pmid = {27897016},
	note = {ZSCC: 0000001 },
	keywords = {Computational Biology, Humans},
	pages = {649--652},
}

The modern healthcare and life sciences ecosystem is moving towards an increasingly open and data-centric approach to discovery science. This evolving paradigm is predicated on a complex set of information needs related to our collective ability to share, discover, reuse, integrate, and analyze open biological, clinical, and population level data resources of varying composition, granularity, and syntactic or semantic consistency. Such an evolution is further impacted by a concomitant growth in the size of data sets that can and should be employed for both hypothesis discovery and testing. When such open data can be accessed and employed for discovery purposes, a broad spectrum of high impact end-points is made possible. These span the spectrum from identification of de novo biomarker complexes that can inform precision medicine, to the repositioning or repurposing of extant agents for new and cost-effective therapies, to the assessment of population level influences on disease and wellness. Of note, these types of uses of open data can be either primary, wherein open data is the substantive basis for inquiry, or secondary, wherein open data is used to augment or enrich project-specific or proprietary data that is not open in and of itself. This workshop is concerned with the key challenges, opportunities, and methodological best practices whereby open data can be used to drive the advancement of discovery science in all of the aforementioned capacities.
A Systems Approach to Healthcare Innovation Using the MIT Hacking Medicine Model. Gubin, T. A.; Iyer, H. P.; Liew, S. N.; Sarma, A.; Revelos, A.; Ribas, J.; Movassaghi, B.; Chu, Z. M.; Khalid, A. N.; Majmudar, M. D.; and Lee, C. X. Cell Systems, 5(1): 6–10. July 2017. ZSCC: 0000023
doi   link   bibtex   abstract  
@article{gubin_systems_2017,
	title = {A {Systems} {Approach} to {Healthcare} {Innovation} {Using} the {MIT} {Hacking} {Medicine} {Model}},
	volume = {5},
	issn = {2405-4712},
	doi = {10.1016/j.cels.2017.02.012},
	abstract = {MIT Hacking Medicine is a student, academic, and community-led organization that uses systems-oriented "healthcare hacking" to address challenges around innovation in healthcare. The group has organized more than 80 events around the world that attract participants with diverse backgrounds. These participants are trained to address clinical needs from the perspective of multiple stakeholders and emphasize utility and implementation viability of proposed solutions. We describe the MIT Hacking Medicine model as a potential method to integrate collaboration and training in rapid innovation techniques into academic medical centers. Built upon a systems approach to healthcare innovation, the time-compressed but expertly guided nature of the events could enable more widely accessible preliminary training in systems-level innovation methodology, as well as creating a structured opportunity for interdisciplinary congregation and collaboration.},
	language = {eng},
	number = {1},
	journal = {Cell Systems},
	author = {Gubin, Tatyana A. and Iyer, Hari P. and Liew, Shirlene N. and Sarma, Aartik and Revelos, Alex and Ribas, João and Movassaghi, Babak and Chu, Zen M. and Khalid, Ayesha N. and Majmudar, Maulik D. and Lee, Christopher Xiang},
	month = jul,
	year = {2017},
	pmid = {28750199},
	note = {ZSCC: 0000023 },
	keywords = {Academic Medical Centers, Delivery of Health Care, Diffusion of Innovation, Humans, Interdisciplinary Studies, Massachusetts, Models, Organizational, Systems Analysis},
	pages = {6--10},
}

MIT Hacking Medicine is a student, academic, and community-led organization that uses systems-oriented "healthcare hacking" to address challenges around innovation in healthcare. The group has organized more than 80 events around the world that attract participants with diverse backgrounds. These participants are trained to address clinical needs from the perspective of multiple stakeholders and emphasize utility and implementation viability of proposed solutions. We describe the MIT Hacking Medicine model as a potential method to integrate collaboration and training in rapid innovation techniques into academic medical centers. Built upon a systems approach to healthcare innovation, the time-compressed but expertly guided nature of the events could enable more widely accessible preliminary training in systems-level innovation methodology, as well as creating a structured opportunity for interdisciplinary congregation and collaboration.
Patient-Driven Medical Innovations: Building a Precision Medicine Supply Chain for All. Staff, T. P. C. March 2017. ZSCC: NoCitationData[s0]
Paper   link   bibtex   abstract  
@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 […]
The need for citizen science in the transition to a sustainable peer-to-peer-society. Wildschut, D. Futures, 91: 46–52. August 2017. ZSCC: 0000031
Paper   doi   link   bibtex   abstract  
@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.
Do-It-Yourself Empowerment as Experienced by Novice Makers with Disabilities. Meissner, J. L.; Vines, J.; McLaughlin, J.; Nappey, T.; Maksimova, J.; and Wright, P. In Proceedings of the 2017 Conference on Designing Interactive Systems - DIS '17, pages 1053–1065, Edinburgh, United Kingdom, 2017. ACM Press
Paper   doi   link   bibtex   abstract  
@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.
  2016 (2)
Academic Research in the 21st Century: Maintaining Scientific Integrity in a Climate of Perverse Incentives and Hypercompetition. Edwards, M. A.; and Roy, S. Environmental Engineering Science, 34(1): 51–61. September 2016. ZSCC: NoCitationData[s0] Publisher: Mary Ann Liebert, Inc., publishers
Paper   doi   link   bibtex   abstract  
@article{edwards_academic_2016,
	title = {Academic {Research} in the 21st {Century}: {Maintaining} {Scientific} {Integrity} in a {Climate} of {Perverse} {Incentives} and {Hypercompetition}},
	volume = {34},
	shorttitle = {Academic {Research} in the 21st {Century}},
	url = {https://www.liebertpub.com/doi/10.1089/ees.2016.0223},
	doi = {10.1089/ees.2016.0223},
	abstract = {Over the last 50 years, we argue that incentives for academic scientists have become increasingly perverse in terms of competition for research funding, development of quantitative metrics to measure performance, and a changing business model for higher education itself. Furthermore, decreased discretionary funding at the federal and state level is creating a hypercompetitive environment between government agencies (e.g., EPA, NIH, CDC), for scientists in these agencies, and for academics seeking funding from all sources—the combination of perverse incentives and decreased funding increases pressures that can lead to unethical behavior. If a critical mass of scientists become untrustworthy, a tipping point is possible in which the scientific enterprise itself becomes inherently corrupt and public trust is lost, risking a new dark age with devastating consequences to humanity. Academia and federal agencies should better support science as a public good, and incentivize altruistic and ethical outcomes, while de-emphasizing output.},
	number = {1},
	urldate = {2021-04-13},
	journal = {Environmental Engineering Science},
	author = {Edwards, Marc A. and Roy, Siddhartha},
	month = sep,
	year = {2016},
	note = {ZSCC: NoCitationData[s0] 
Publisher: Mary Ann Liebert, Inc., publishers},
	pages = {51--61},
}

Over the last 50 years, we argue that incentives for academic scientists have become increasingly perverse in terms of competition for research funding, development of quantitative metrics to measure performance, and a changing business model for higher education itself. Furthermore, decreased discretionary funding at the federal and state level is creating a hypercompetitive environment between government agencies (e.g., EPA, NIH, CDC), for scientists in these agencies, and for academics seeking funding from all sources—the combination of perverse incentives and decreased funding increases pressures that can lead to unethical behavior. If a critical mass of scientists become untrustworthy, a tipping point is possible in which the scientific enterprise itself becomes inherently corrupt and public trust is lost, risking a new dark age with devastating consequences to humanity. Academia and federal agencies should better support science as a public good, and incentivize altruistic and ethical outcomes, while de-emphasizing output.
Ethics and Relationship: From Risk Management to Relational Engagement. Birrell, P. J.; and Bruns, C. M. Journal of Counseling & Development, 94(4): 391–397. October 2016. ZSCC: 0000005
Paper   doi   link   bibtex  
@article{birrell_ethics_2016,
	title = {Ethics and {Relationship}: {From} {Risk} {Management} to {Relational} {Engagement}},
	volume = {94},
	issn = {07489633},
	shorttitle = {Ethics and {Relationship}},
	url = {http://doi.wiley.com/10.1002/jcad.12097},
	doi = {10.1002/jcad.12097},
	language = {en},
	number = {4},
	urldate = {2020-04-02},
	journal = {Journal of Counseling \& Development},
	author = {Birrell, Pamela J. and Bruns, Cindy M.},
	month = oct,
	year = {2016},
	note = {ZSCC: 0000005},
	pages = {391--397},
}

  2015 (1)
Perspective: Linking Design Thinking with Innovation Outcomes through Cognitive Bias Reduction. Liedtka, J. Journal of Product Innovation Management, 32(6): 925–938. 2015. ZSCC: 0000519 _eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1111/jpim.12163
Paper   doi   link   bibtex   abstract  
@article{liedtka_perspective_2015,
	title = {Perspective: {Linking} {Design} {Thinking} with {Innovation} {Outcomes} through {Cognitive} {Bias} {Reduction}},
	volume = {32},
	copyright = {© 2014 Product Development \& Management Association},
	issn = {1540-5885},
	shorttitle = {Perspective},
	url = {https://onlinelibrary.wiley.com/doi/abs/10.1111/jpim.12163},
	doi = {https://doi.org/10.1111/jpim.12163},
	abstract = {“Design thinking” has generated significant attention in the business press and has been heralded as a novel problem-solving methodology well suited to the often-cited challenges business organizations face in encouraging innovation and growth. Yet the specific mechanisms through which the use of design, approached as a thought process, might improve innovation outcomes have not received significant attention from business scholars. In particular, its utility has only rarely been linked to the academic literature on individual cognition and decision-making. This perspective piece advocates addressing this omission by examining “design thinking” as a practice potentially valuable for improving innovation outcomes by helping decision-makers reduce their individual level cognitive biases. In this essay, I first review the assumptions, principles, and key process tools associated with design thinking. I then establish its foundation in the decision-making literature, drawing on an extensive body of research on cognitive biases and their impact. The essay concludes by advancing a set of propositions and research implications, aiming to demonstrate one particular path that future research might take in assessing the utility of design thinking as a method for improving organizational outcomes related to innovation. In doing so, it seeks to address the challenge of conducting academic research on a practice that is obviously popular in management circles but appears resistant to rigorous empirical inquiry because of the multifaceted nature of its “basket” of tools and processes and the complexity of measuring the outcomes it produces.},
	language = {en},
	number = {6},
	urldate = {2021-04-09},
	journal = {Journal of Product Innovation Management},
	author = {Liedtka, Jeanne},
	year = {2015},
	note = {ZSCC: 0000519 
\_eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1111/jpim.12163},
	pages = {925--938},
}

“Design thinking” has generated significant attention in the business press and has been heralded as a novel problem-solving methodology well suited to the often-cited challenges business organizations face in encouraging innovation and growth. Yet the specific mechanisms through which the use of design, approached as a thought process, might improve innovation outcomes have not received significant attention from business scholars. In particular, its utility has only rarely been linked to the academic literature on individual cognition and decision-making. This perspective piece advocates addressing this omission by examining “design thinking” as a practice potentially valuable for improving innovation outcomes by helping decision-makers reduce their individual level cognitive biases. In this essay, I first review the assumptions, principles, and key process tools associated with design thinking. I then establish its foundation in the decision-making literature, drawing on an extensive body of research on cognitive biases and their impact. The essay concludes by advancing a set of propositions and research implications, aiming to demonstrate one particular path that future research might take in assessing the utility of design thinking as a method for improving organizational outcomes related to innovation. In doing so, it seeks to address the challenge of conducting academic research on a practice that is obviously popular in management circles but appears resistant to rigorous empirical inquiry because of the multifaceted nature of its “basket” of tools and processes and the complexity of measuring the outcomes it produces.
  2013 (2)
Do-it-yourself biology: challenges and promises for an open science and technology movement. Landrain, T.; Meyer, M.; Perez, A. M.; and Sussan, R. Systems and Synthetic Biology, 7(3): 115–126. September 2013.
Paper   doi   link   bibtex   abstract  
@article{landrain_-it-yourself_2013,
	title = {Do-it-yourself biology: challenges and promises for an open science and technology movement},
	volume = {7},
	issn = {1872-5325},
	shorttitle = {Do-it-yourself biology},
	url = {https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740105/},
	doi = {10.1007/s11693-013-9116-4},
	abstract = {The do-it-yourself biology (DIYbio) community is emerging as a movement that fosters open access to resources permitting modern molecular biology, and synthetic biology among others. It promises in particular to be a source of cheaper and simpler solutions for environmental monitoring, personal diagnostic and the use of biomaterials. The successful growth of a global community of DIYbio practitioners will depend largely on enabling safe access to state-of-the-art molecular biology tools and resources. In this paper we analyze the rise of DIYbio, its community, its material resources and its applications. We look at the current projects developed for the international genetically engineered machine competition in order to get a sense of what amateur biologists can potentially create in their community laboratories over the coming years. We also show why and how the DIYbio community, in the context of a global governance development, is putting in place a safety/ethical framework for guarantying the pursuit of its activity. And finally we argue that the global spread of DIY biology potentially reconfigures and opens up access to biological information and laboratory equipment and that, therefore, it can foster new practices and transversal collaborations between professional scientists and amateurs.},
	number = {3},
	urldate = {2022-01-13},
	journal = {Systems and Synthetic Biology},
	author = {Landrain, Thomas and Meyer, Morgan and Perez, Ariel Martin and Sussan, Remi},
	month = sep,
	year = {2013},
	pmid = {24432149},
	pmcid = {PMC3740105},
	pages = {115--126},
}

The do-it-yourself biology (DIYbio) community is emerging as a movement that fosters open access to resources permitting modern molecular biology, and synthetic biology among others. It promises in particular to be a source of cheaper and simpler solutions for environmental monitoring, personal diagnostic and the use of biomaterials. The successful growth of a global community of DIYbio practitioners will depend largely on enabling safe access to state-of-the-art molecular biology tools and resources. In this paper we analyze the rise of DIYbio, its community, its material resources and its applications. We look at the current projects developed for the international genetically engineered machine competition in order to get a sense of what amateur biologists can potentially create in their community laboratories over the coming years. We also show why and how the DIYbio community, in the context of a global governance development, is putting in place a safety/ethical framework for guarantying the pursuit of its activity. And finally we argue that the global spread of DIY biology potentially reconfigures and opens up access to biological information and laboratory equipment and that, therefore, it can foster new practices and transversal collaborations between professional scientists and amateurs.
The Quantified Self: Fundamental Disruption in Big Data Science and Biological Discovery. Swan, M. Big Data, 1(2): 85–99. June 2013. ZSCC: 0000833
Paper   doi   link   bibtex   abstract  
@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.
  2012 (3)
Partners & Organizational Supporters \textbar Society for Participatory Medicine. September 2012.
Paper   link   bibtex   abstract  
@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 […]
The Maker Movement. Dougherty, D. Innovations: Technology, Governance, Globalization, 7(3): 11–14. July 2012. ZSCC: 0000491
Paper   doi   link   bibtex  
@article{dougherty_maker_2012,
	title = {The {Maker} {Movement}},
	volume = {7},
	issn = {1558-2477, 1558-2485},
	url = {http://www.mitpressjournals.org/doi/10.1162/INOV_a_00135},
	doi = {10.1162/INOV_a_00135},
	language = {en},
	number = {3},
	urldate = {2020-04-02},
	journal = {Innovations: Technology, Governance, Globalization},
	author = {Dougherty, Dale},
	month = jul,
	year = {2012},
	note = {ZSCC: 0000491},
	pages = {11--14},
}

Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. Swan, M. Journal of Medical Internet Research, 14(2): e46. 2012. 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
Paper   doi   link   bibtex   abstract  
@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]
  2011 (2)
Identifying the Challenges in Community-Based Participatory Research Collaboration. Hotze, T. AMA Journal of Ethics, 13(2): 105–108. February 2011. ZSCC: 0000009 Publisher: American Medical Association
Paper   doi   link   bibtex   abstract  
@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.
Design for (every)one : co-creation as a bridge between universal design and rehabilitation engineering. De Couvreur, L.; and Goossens, R. CoDesign, 7(2): 107–121. June 2011.
Paper   doi   link   bibtex   abstract  
@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.
  2008 (1)
Why Are Computational Neuroscience and Systems Biology So Separate?. Schutter, E. D. PLOS Computational Biology, 4(5): e1000078. May 2008. ZSCC: 0000102 Publisher: Public Library of Science
Paper   doi   link   bibtex   abstract  
@article{schutter_why_2008,
	title = {Why {Are} {Computational} {Neuroscience} and {Systems} {Biology} {So} {Separate}?},
	volume = {4},
	issn = {1553-7358},
	url = {https://journals.plos.org/ploscompbiol/article?id=10.1371/journal.pcbi.1000078},
	doi = {10.1371/journal.pcbi.1000078},
	abstract = {Despite similar computational approaches, there is surprisingly little interaction between the computational neuroscience and the systems biology research communities. In this review I reconstruct the history of the two disciplines and show that this may explain why they grew up apart. The separation is a pity, as both fields can learn quite a bit from each other. Several examples are given, covering sociological, software technical, and methodological aspects. Systems biology is a better organized community which is very effective at sharing resources, while computational neuroscience has more experience in multiscale modeling and the analysis of information processing by biological systems. Finally, I speculate about how the relationship between the two fields may evolve in the near future.},
	language = {en},
	number = {5},
	urldate = {2021-04-20},
	journal = {PLOS Computational Biology},
	author = {Schutter, Erik De},
	month = may,
	year = {2008},
	note = {ZSCC: 0000102 
Publisher: Public Library of Science},
	keywords = {Cellular neuroscience, Computational neuroscience, Computer software, Information processing, Neural networks, Neuronal dendrites, Neurons, Systems biology},
	pages = {e1000078},
}

Despite similar computational approaches, there is surprisingly little interaction between the computational neuroscience and the systems biology research communities. In this review I reconstruct the history of the two disciplines and show that this may explain why they grew up apart. The separation is a pity, as both fields can learn quite a bit from each other. Several examples are given, covering sociological, software technical, and methodological aspects. Systems biology is a better organized community which is very effective at sharing resources, while computational neuroscience has more experience in multiscale modeling and the analysis of information processing by biological systems. Finally, I speculate about how the relationship between the two fields may evolve in the near future.
  undefined (14)
Biohacking Your Brain's Health.
Paper   link   bibtex   abstract  
@misc{noauthor_biohacking_nodate,
	title = {Biohacking {Your} {Brain}'s {Health}},
	url = {https://www.coursera.org/learn/biohacking-your-brains-health},
	abstract = {Offered by Emory University. With deteriorating health, particularly brain health, occurring at a global level, this course introduces you ... Enroll for free.},
	language = {en},
	urldate = {2022-01-13},
	journal = {Coursera},
}

Offered by Emory University. With deteriorating health, particularly brain health, occurring at a global level, this course introduces you ... Enroll for free.
The Rise of Citizen Bioscience. Pauwels, E.
Paper   link   bibtex   abstract  
@misc{pauwels_rise_nodate,
	title = {The {Rise} of {Citizen} {Bioscience}},
	url = {https://blogs.scientificamerican.com/observations/the-rise-of-citizen-bioscience/},
	abstract = {Is self-experimentation with gene editing techniques something we should herald as a new form of \“permissionless\” innovation?},
	language = {en},
	urldate = {2022-01-13},
	journal = {Scientific American Blog Network},
	author = {Pauwels, Eleonore},
}

Is self-experimentation with gene editing techniques something we should herald as a new form of “permissionless” innovation?
NSF Award Search: Award # 2040688 - NSF Convergence Accelerator Track D: Deep Monitoring of the Biome Will Converge Life Sciences, Policy, and Engineering.
Paper   link   bibtex  
@misc{noauthor_nsf_nodate,
	title = {{NSF} {Award} {Search}: {Award} \# 2040688 - {NSF} {Convergence} {Accelerator} {Track} {D}: {Deep} {Monitoring} of the {Biome} {Will} {Converge} {Life} {Sciences}, {Policy}, and {Engineering}},
	url = {https://www.nsf.gov/awardsearch/showAward?AWD_ID=2040688&HistoricalAwards=false},
	urldate = {2021-06-13},
}

Neighborhood Explorer.
Paper   link   bibtex  
@misc{noauthor_neighborhood_nodate,
	title = {Neighborhood {Explorer}},
	url = {https://spoke.rbvi.ucsf.edu/},
	urldate = {2021-06-13},
}

Schizophrenia Journal Articles - Index.
Paper   link   bibtex  
@misc{noauthor_schizophrenia_nodate,
	title = {Schizophrenia {Journal} {Articles} - {Index}},
	url = {https://www.medscape.com/index/list_7682_0},
	urldate = {2021-04-18},
}

Online Resources for Science Laboratories (POD) - Remote Teaching.
Paper   link   bibtex   abstract  
@misc{noauthor_online_nodate,
	title = {Online {Resources} for {Science} {Laboratories} ({POD}) - {Remote} {Teaching}},
	url = {https://docs.google.com/spreadsheets/u/1/d/18iVSIeOqKjj58xcR8dYJS5rYvzZ4X1UGLWhl3brRzCM/edit?usp=drive_web&ouid=107429413187361630049&usp=embed_facebook},
	abstract = {All Resources

Type of Resource,Subject,Website,Website URL,Description,Access (open, limited, at cost),Registration required,additional notes
 Attribution-ShareAlike 
CC BY-SA
,“Initially developed by the Center for Teaching \& Learning at Kent State University, distributed through the Profession...},
	language = {en},
	urldate = {2021-04-13},
	journal = {Google Docs},
}

All Resources Type of Resource,Subject,Website,Website URL,Description,Access (open, limited, at cost),Registration required,additional notes Attribution-ShareAlike CC BY-SA ,“Initially developed by the Center for Teaching & Learning at Kent State University, distributed through the Profession...
Four Thieves Vinegar.
Paper   link   bibtex  
@misc{noauthor_four_nodate,
	title = {Four {Thieves} {Vinegar}},
	url = {https://fourthievesvinegar.org/?blog},
	urldate = {2021-04-13},
}

Curated list of awesome lists \textbar Project-Awesome.org.
Paper   link   bibtex  
@misc{noauthor_curated_nodate,
	title = {Curated list of awesome lists {\textbar} {Project}-{Awesome}.org},
	url = {https://project-awesome.org/},
	urldate = {2021-04-13},
}

Find Open Textbooks – BCcampus OpenEd Resources.
Paper   link   bibtex  
@misc{noauthor_find_nodate,
	title = {Find {Open} {Textbooks} – {BCcampus} {OpenEd} {Resources}},
	url = {https://open.bccampus.ca/browse-our-collection/find-open-textbooks/},
	language = {en-US},
	urldate = {2021-03-18},
}

Open Knowledge Maps - A visual interface to the world's scientific knowledge. Maps, O. K. ZSCC: 0000001
Paper   link   bibtex   abstract  
@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.
Biophysics —BIO-PROTOCOL.
Paper   link   bibtex  
@misc{noauthor_biophysics_nodate,
	title = {Biophysics —{BIO}-{PROTOCOL}},
	url = {https://bio-protocol.org/Category.aspx?fl1=26&c=1},
	urldate = {2021-03-17},
}

The BRAIN Initiative and Neuroethics: Enabling and Enhancing Neuroscience Advances for Society: AJOB Neuroscience: Vol 11, No 3.
Paper   link   bibtex  
@misc{noauthor_brain_nodate,
	title = {The {BRAIN} {Initiative} and {Neuroethics}: {Enabling} and {Enhancing} {Neuroscience} {Advances} for {Society}: {AJOB} {Neuroscience}: {Vol} 11, {No} 3},
	url = {https://www.tandfonline.com/doi/abs/10.1080/21507740.2020.1778121},
	urldate = {2020-10-04},
}

A PHENOMENOLOGICAL LOOK AT THE LIFE HACKING-ENABLED PRACTICES OF INDIVIDUALS WITH MOBILITY AND DEXTERITY IMPAIRMENTS. Robinson, J. ,499. . ZSCC: 0000000
link   bibtex  
@article{robinson_phenomenological_nodate,
	title = {A {PHENOMENOLOGICAL} {LOOK} {AT} {THE} {LIFE} {HACKING}-{ENABLED} {PRACTICES} {OF} {INDIVIDUALS} {WITH} {MOBILITY} {AND} {DEXTERITY} {IMPAIRMENTS}},
	language = {en},
	author = {Robinson, Jerry},
	note = {ZSCC: 0000000},
	pages = {499},
}

What is Citizen Science. Library Catalog: scistarter.org
Paper   link   bibtex   abstract  
@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.

See Also

Open Science
Open Science MOOC
Open Humans
Citizen Science Association
awesome | Curated list of awesome lists | Digital Tools For Citizen Science
Open Science Grassroots Community Networks
Center for Open Science
Open Science Principles
Epistemic Thinking and Ethics
Intellectual Humility
Institute for Globally Distributed Open Research and Education
Open Educational Resources (OER) Commons
Center For the Advancement of Informal Science Education
Open Science, Medicine, & Engineering Platforms & Communities of Practice

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