Assessing the Needs and Perspectives of Patients With Asthma and Chronic Obstructive Pulmonary Disease on Patient Web Portals: Focus Group Study
Bibliographic record
Abstract
BACKGROUND: As accessibility to the internet has increased in society, many health care organizations have developed patient Web portals (PWPs), which can provide a range of self-management options to improve patient access. However, the available evidence suggests that they are used inefficiently and do not benefit patients with low health literacy. Asthma and chronic obstructive pulmonary disease (COPD) are common chronic diseases that require ongoing self-management. Moreover, patients with COPD are typically older and have lower health literacy. OBJECTIVE: This study aimed to obtain and present an overview of patients' perspectives of PWPs to facilitate the development of a portal that better meets the needs of patients with asthma and COPD. METHODS: We performed a focus group study using semistructured interviews in 3 patient groups from the north of the Netherlands who were recruited through the Dutch Lung Foundation. Each group met 3 times for 2 hours each at a 1-week interval. Data were analyzed with coding software, and patient descriptors were analyzed with nonparametric tests. The consolidated criteria for reporting qualitative research were followed when conducting the study. RESULTS: We included 29 patients (16/29, 55% male; mean age 65 [SD 10] years) with COPD (n=14), asthma-COPD overlap (n=4), asthma (n=10), or other respiratory disease (n=1). There was a large variation in the internet experience; some patients hardly used the internet (4/29, 14%), whereas others used internet >3 times a week (23/29, 79%). In general, patients were positive about having access to a PWP, considering access to personal medical records as the most important option, though only after discussion with their physician. A medication overview was considered a useful option. We found that communication between health care professionals could be improved if patients could use the PWP to share information with their health care professionals. However, as participants were worried about the language and usability of portals, it was recommended that language should be adapted to the patient level. Another concern was that disease monitoring through Web-based questionnaire use would only be useful if the results were discussed with health care professionals. CONCLUSIONS: Participants were positive about PWPs and considered them a logical step. Today, most patients tend to be better educated and have internet access, while also being more assertive and better informed about their disease. A PWP could support these patients. Our participants also provided practical suggestions for implementation in current and future PWP developments. The next step will be to develop a portal based on these recommendations and assess whether it meets the needs of patients and health care providers.
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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 | 0.006 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 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".