Patient participation – to what extent? A survey of patients’ perspectives
Bibliographic record
Abstract
Objective: The past decades have seen an increasingly patient-centred approach to healthcare delivery, with emphasis on patients’ participatory role. Patients understand the participatory role as being provided with relevant information, opportunity to give their opinion on potential treatments, involvement in discussions about their condition, or involvement in the decision-making process. Patients’ wishes for participation vary considerably. The aim of this study is to explore patients’ assessment of the importance of, preferences for and experience of participation. Methods: A cross-sectional cohort study was conducted. Inpatients and outpatients with diabetes, heart failure or haematological cancer admitted to a hospital in Denmark (N = 1736) received a questionnaire. The results are described by proportions and analysed by Pearson’s chi-square test. Results: The questionnaire was returned by 1173 patients (68% response rate) of whom 89% found participation very important. The same proportion perceived adequacy of information, 90% expressed a preference for consultation in decision-making and 51% wanted to leave the decisions to staff. Seventy-two percent experienced participation. However, 54% of the respondents who received adequate information and 51% of those who wanted to be consulted did not prefer to make decisions themselves. Sixty percent of the respondents reported a mismatch, as they did not want participation but had nevertheless been involved by staff. Conclusions: Patients find participation of great importance, they feel adequately informed and prefer being consulted in decision-making while they do not necessarily want to make the decisions themselves. We found considerable variation in patients’ level of preferred participation and a mismatch between levels of preferred and received participation.
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.
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 | 0.022 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| 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".