“It’s not just hacking for the sake of it”: a qualitative study of health innovators’ views on patient-driven open innovations, quality and safety
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
BACKGROUND: Open do-it-yourself (DIY) health innovations raise new dilemmas for patient-oriented and service-oriented scholars and healthcare providers. Our study aimed to generate practical insights into quality and safety issues to patient care raised by two volunteer-run, open DIY solutions: Nightscout Project (patient-driven, open-source software for type 1 diabetes management) and e-NABLE (volunteers who design and three-dimensionally print upper-limb assistive devices). To this end, we examined the views of health innovators who are knowledgeable about medical devices standards and regulations. METHODS: We applied a multimedia-based, data-elicitation technique to conduct indepth interviews with a diversified sample of 31 health innovators practising in two Canadian provinces (Quebec and Ontario). An exploratory thematic analysis approach was used to identify respondents' reasoning processes and compare their overall judgements of Nightscout and e-NABLE. RESULTS: Respondents pondered the following quality and safety issues: importance of the need addressed; accessibility; volunteers' ability to develop and maintain a safe solution of good quality; risks involved for users; consequences of not using the solution; and liability. Overall, innovators see Nightscout as a high-risk DIY solution that requires expert involvement and e-NABLE as a low-risk one that fills a hard-to-meet gap. CONCLUSION: Health innovators generally support patient-driven initiatives but also call for the involvement of professionals who possess complementary skills and knowledge. Our findings provide a list of issues healthcare providers may discuss with patients during clinical consultations to document potential risks and benefits of open DIY solutions. To inform new policy approaches, we propose the development of publicly funded umbrella organisations to act as intermediaries between open DIY solutions and regulatory bodies to help them meet quality and safety standards.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it