Informing the Development of a Digital Health Platform Through Universal Points of Care: Qualitative Survey Study
Bibliographic record
Abstract
BACKGROUND: Epilepsy, multiple sclerosis (MS), and depression are chronic conditions where technology holds potential in clinical monitoring and self-management. Over 5 years, the Remote Assessment of Disease and Relapse - Central Nervous System (RADAR-CNS) consortium has explored the application of remote measurement technology (RMT) to the management and self-management of patients in these clinical areas. The consortium is large and includes clinical and nonclinical researchers as well as a patient advisory board. OBJECTIVE: This formative development study aimed to understand how consortium members viewed the potential of RMT in epilepsy, MS, and depression. METHODS: In this qualitative survey study, we developed a methodological tool, universal points of care (UPOC), to gather views on the potential use, acceptance, and value of a novel RMT platform across 3 chronic conditions (MS, epilepsy, and depression). UPOC builds upon use case scenario methodology, using expert elicitation and analysis of care pathways to develop scenarios applicable across multiple conditions. After developing scenarios, we elicited views on the potential of RMT in these different scenarios through a survey administered to 28 subject matter experts, consisting of 16 health care practitioners; 5 health care services researchers; and 7 people with lived experience of MS, epilepsy, or depression. Survey results were analyzed thematically and using an existing framework of factors describing links between design and context. RESULTS: The survey elicited potential beneficial applications of the RADAR-CNS RMT system as well as patient, clinical, and nonclinical requirements of RMT across the 3 conditions of interest. Potential applications included recognition of early warning signs of relapse from subclinical signals for MS, seizure precipitant signals for epilepsy, and behavior change in depression. RMT was also thought to have the potential to overcome the problem of underreporting, which is especially problematic in epilepsy, and to allow the capture of secondary symptoms that are not generally collected in MS, such as mood. CONCLUSIONS: Respondents suggested novel and unanticipated uses of RMT, including the use of RMT to detect emerging side effects of treatment, enable behavior change for sleep regulation and activity, and offer a way to include family and other carers in a care network, which could assist with goal setting. These suggestions, together with others from this and related work, will inform the development of the system for its eventual application in research and clinical practice. The UPOC methodology was effective in directing respondents to consider the value of health care technologies in condition-specific experiences of everyday life and working practice.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.036 | 0.050 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.004 | 0.006 |
| Scholarly communication | 0.004 | 0.005 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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 source (direct Gemma or distilled Codex), 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".