Mind the Human Value Gap: UX-Driven Platform Cooperative to Take the Big Leap for Mankind
By Gabriëlle Speijer (CatalyzIT) & Peter Walgemoed (Carelliance)
Health clients and clinicians need to take the lead in the digital space as it starts with human values and needs. It’s crucial that clinicians stand for their professional value and all stakeholders contributing to health should follow the same value: the Hippocratic Oath [1]. This is fundamental for the clinician-health client relationship: it rests on honesty [2] to deliver as best their training and judgement will allow them [3]. To keep this openness, the basis of trust and confidentiality must always be maintained in both physical and digital space.
Generative AI as well as other next generation internet and blockchain technologies accelerate the need to take a fundamental different approach to software development and its role in society.
Time is running out for a fundamental ecosystem approach. This requires an open collaborative approach between the health professionals and clients with the technology providers to co-create and validate software during its entire life-cycle.
Data needs to be regarded as a commons that supports this process and is curated at the moment of creation by all stakeholders. In 2016 this was proposed in genomic data curation by a digital Data co-operative [4]. The Data Life-cycle Policy is based on continuous learning with risks on individual and population/society level both breakthroughs as well as prevented disasters in global health can be made.
Biopharma industry has moved rapidly to an outward-looking, cooperative, un-siloed enterprise that is data-driven, data-sharing, agile and AI-supported using FAIR data principles [5].
To accelerate this process, we developed an end user experience driven platform using McKim’s visual thinking breaking you out of the mindset of language [6]. AI software components can be picked like apps from an app store and tried out before they are implemented, validated and monitored by all stakeholders [7]. The core of the experience is formed by an interdisciplinary collaboration team of AI researchers, clinicians, informaticians, and health clients!
This liberated data will be made available through federated Data 3C Spaces. This was already proposed in 2009 by the MIT DataSpace project [8]. The EU is driving this with their European Health Data Space development. These Data Spaces can only function when the end users become curators of their data. They are supported by technology to automate and do this in the most user-friendly way during the entire software life cycle. Data will outlive (AI) software and is curated for generations to continuously learn from.
We foresee the development of these Data &Technology Spaces in the following Figure. The technology moves in line with the maturity of the end-users’ organization. They transform into mission driven self-steering teams, that work horizontally to learn and improve their skills with their peers. The current application vendor lock-in used by siloed organizations with individual workspaces will be replaced by value driven Collaborative Spaces. In these co-creation Spaces professionals work together in a platform to continuously learn like a lab driven by their clients’ needs. This learning step is needed before moving to the Universal Space where the data becomes completely de-central multi-modal cross sector co-operative driven.
Citation details
Please cite the permanent record of this blog, available at:
Speijer, G., & Walgemoed, P. (2024). Mind the Human Value Gap: UX-Driven Platform Cooperative to Take the Big Leap for Mankind. Zenodo. https://doi.org/10.5281/zenodo.13712708
References
1. Gabriëlle Speijer, Peter Walgemoed. Towards a sustainable health ecosystem based on the deepest professional values. CPI September 2022. https://www.researchgate.net/publication/377486207_Toward_a_sustainable_health_ecosystem_fixed_on_the_deepest_professional_values
2. Steven H. Miles. The art of medicine. Hippocrates and informed consent. The Lancet Vol 374. October 17, 2009. https://www.thelancet.com/action/showPdf?pii=S0140-6736%2809%2961812-2
3. Patrick Guinan. Medical Oaths as a Universal Ethic. Ethics & Medicine. Volume 37, Issue 3, Pages 3–4, March 2012. https://doi.org/10.5840/em20123735
4. Peter Walgemoed, Bert Eussen, Curating the Clinical Genome. Wellcome Genome Campus Conference, June 2016, http://dx.doi.org/10.13140/RG.2.2.33125.63201
5. John Wise, Alexandra Grebe de Barron, Andrea Splendiani, Beeta Balali-Mood, Drashtti Vasant, Eric Little, Gaspare Mellino, Ian Harrow, Ian Smith, Jan Taubert, Kees van Bochove, Martin Romacker, Peter Walgemoed, Rafael C. Jimenez, Rainer Winnenburg, Tom Plasterer, Vibhor Guptu, Victoria Hedley. Implementation and relevance of FAIR data principles in biopharmaceutical R&D. Drug Discovery Today. Volume 24. Issue 4. April 2019. http://dx.doi.org/10.1016/j.drudis.2019.01.008
6. Robert McKim.“Visual thinking breaks you out of the mindset of language, which keeps you stuck in a certain way of seeing and expressing the world.” 1985 Smithsonian magazine article on teaching creativity. https://engineering.stanford.edu/magazine/robert-mckim-force-stanfords-product-design-program-has-died
7. Gabriëlle Speijer, Peter Walgemoed, Han Kohar, Guy Roberts. fluKs Collaborative Space. ICT&Health. December 2019. https://ictandhealth.com/blog/who-still-follows-the-hippocratic-oath/
8. Stuart Madnick (MIT); Hal Abelson (MIT), Jerrold Grochow (MIT), MacKenzie Smith (MIT); Timothy Berners-Lee (W3C, WSRI), Pat Dreher (RENCI), John Erickson (HP Labs), Geneva Henry (Rice University), Mei Hsu (HP Labs), Henry Jacoby (MIT), David Karger (MIT), Isaac Kohane (Harvard), Michele Kimpton (DSpace Foundation), Thomas Malone (MIT), Alexa McCray (Harvard), Jill Mesirov (Broad Institute), Ronald Prinn (MIT), Michael Siegel (MIT), Michael Stonebraker (MIT), Tyler Walters (Georgia Tech), Danny Weitzner (W3C, WSRI), John Wilbanks (Science Commons), Wei Lee Woon (Masdar Institute of Science and Technology). DataSpace project. 2009. https://web.mit.edu/smadnick/www/DataSpace/2009FullProposal-abbrev.pdf
About the Authors
Gabrielle Speijer is Radiation-Oncologist ( Haga Teaching Hospital), editorial board member ICT&health Nl and Int., board member NVRO and delegate in FMS representing Science & Innovation, founder of CatalyzIT ‘only impact for health!’. HIMSS Global Future50 Clinical Leader.
Peter Walgemoed, through Carelliance and LabSpace.coop, leads efforts in sustainable data stewardship and digital sustainability for open innovation. With over 24 years of experience in digital health and data management, he has developed frameworks for secure and trustworthy digital ecosystems, particularly in healthcare and energy.
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