Thread

Replies (8)

"I was recently at a meeting of academics, digital librarians, and technologists, talking about the construction of usable specialized digital archives. The librarians and technologists told of constructing beautiful systems, with 24 different metadata fields and incredibly powerful search capabilities. They also explained the “dirty secret” of many of these archives: no one uses them. The response from the group was a thoughtful one – academics from within the discipline should be included in the design process, so that the system fits their patterns of work, and conceptual categories, rather than being imposed based on some alien categorical scheme. Who could disagree? Nevertheless, I was struck by the similarity of the scene to a whole series of moments in the history of technology: moments where the experts dramatically misunderstood the likely patterns of use of a technology. The telephone was, famously, initially imagined as a one-to-many communications device, useful for weather reports distributed from a central source and the like. It found such use only in Albania.10 ATT predicted that cellphones would be used by a maximum of 900,000 people in the United States by the year 2000.11 The FCC’s prediction was lower. (Would that they had been correct!) Who predicted that IM would be a killer app, or imagined that e-mail would replace the phone call in much of corporate culture? Indeed, to go back to my earlier example, who predicted the explosion of the Web, or the extent to which people would rush to share knowledge, impressions, opinions – generally at some inconvenience to themselves and without monetary incentives to do so?"
"The point is, if the history of technology teaches us anything, it teaches us that we are extremely bad at predicting ex ante the uses of technology. This fact has an overlooked, but absolutely vital design corollary; wherever possible, design the system to run with open content, on open protocols, to be potentially available to the largest possible number of users, and to accept the widest possible range of experimental modifications from users who can themselves determine the development of the technology. Then sit back and wait to see what emerges. It may be that your predictions of how the technology will be used, and even your predictions about the potential user group, will be completely wrong."
"Take the world of scientific medical research. ... the internet has meant a dramatic surge in lay-people using the scholarly literature to research their, or a family member’s illness, to help frame questions to doctors, to look at the results of new studies and the like. NIH has actually redesigned Medline to make it more accessible to lay people. Sometimes, of course, this means that medically untrained people misdiagnose their illnesses, pester their doctors with fanciful interpretations of irrelevant studies, or refuse vaccines based on unproven charges of their effects. These are real costs, yet the consensus seems to be that the benefits are even greater – improving health knowledge, helping to catch misdiagnoses, encouraging people to seek medical care more quickly when it is appropriate, assisting in the formation of patient groups, and sometimes even catalyzing patient-led attempts to encourage development of new therapies." cc @npub1zvu0...w2ya @MedSchlr
My key takeaways similar to yours: User-Centered Design in Academic Systems "Academics from within the discipline should be included in the design process, so that the system fits their patterns of work, and conceptual categories, rather than being imposed based on some alien categorical scheme." — James Boyle, "Mertonianism Unbound? Imagining Free, Decentralized Access to Most Cultural and Scientific Material" This principle extends beyond academics. For MedSchlr to truly serve as a knowledge commons, we must involve a range of users—including the public and the Nostr community—in co-creating features that meet their needs for accessing, understanding, and engaging with health research. Open Architecture as Innovation Engine "Wherever possible, design the system to run with open content, on open protocols, to be potentially available to the largest possible number of users, and to accept the widest possible range of experimental modifications from users who can themselves determine the development of the technology. Then sit back and wait to see what emerges." — James Boyle (citing Eric Von Hippel's work on user-based innovation) This collaborative approach—combining open access with decentralized protocols—challenges us to question the centralized architecture of existing structures and guides our development philosophy for MedSchlr.
So one initial question we may explore in our team research could be: So makes me think for the Research abstract submission we discussed at the team meeting, one possible literature scoping review question that could be examined is: What evidence exists regarding stakeholder participation (academics, clinicians, patients, and public) in the design, governance, and feature development of health and medical scientific repositories?