Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool
Bibliographic record
Abstract
BACKGROUND: Although it is well established that family-centered education is critical to managing childhood asthma, the information needs of parents of children with asthma are not being met through current educational approaches. Patient-driven educational materials that leverage the power of the storytelling and the arts show promise in communicating health information and assisting in illness self-management. However, such arts-based knowledge translation approaches are in their infancy, and little is known about how to develop such tools for parents. This paper reports on the development of "My Asthma Diary" - an innovative knowledge translation tool based on rigorous research evidence and tailored to parents' asthma-related information needs. METHODS: We used a multi-stage process to develop four eBook prototypes of "My Asthma Diary." We conducted formative research on parents' information needs and identified high quality research evidence on childhood asthma, and used these data to inform the development of the asthma eBooks. We established interdisciplinary consulting teams with health researchers, practitioners, and artists to help iteratively create the knowledge translation tools. RESULTS: We describe the iterative, transdisciplinary process of developing asthma eBooks which incorporates: (I) parents' preferences and information needs on childhood asthma, (II) quality evidence on childhood asthma and its management, and (III) the engaging and informative powers of storytelling and visual art as methods to communicate complex health information to parents. We identified four dominant methodological and procedural challenges encountered during this process: (I) working within an inter-disciplinary team, (II) quantity and ordering of information, (III) creating a composite narrative, and (IV) balancing actual and ideal management scenarios. CONCLUSIONS: We describe a replicable and rigorous multi-staged approach to developing a patient-driven, creative knowledge translation tool, which can be adapted for use with different populations and contexts. We identified specific procedural and methodological challenges that others conducting comparable work should consider, particularly as creative, patient-driven knowledge translation strategies continue to emerge across health disciplines.
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How this classification was reachedexpand
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 | 0.002 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.001 |
| 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 itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".