Patient advocate perspectives on involvement in HTA: an international snapshot
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
A number of health technology assessment (HTA) organisations have developed processes to engage patients in the assessment of new health technologies such as pharmaceuticals, diagnostic tests, devices or medical procedures. Typically, this involves the HTA agency providing an opportunity for patient advocates and their patient organisations (support groups for patients with a specific disease or condition) to provide submissions detailing experiences with the disease and the health technology that is being assessed. While some literature exists about how HTA agencies view the engagement of patients in the HTA process, it is not yet clear how the patient advocates and patient organisations themselves view this engagement. To answer this question, we surveyed the views of patient advocates who were members of patient organisations known to be engaged in the process of HTA or evidence-based practice. Snowballing – that is, passing on the survey invitation from individuals invited to take part in the survey to other individuals – occurred in one of the countries. The responses in this country provided a very useful comparison between the views of people who were appointed as the ‘patient representatives’ on an HTA committee with those who contributed input as part of the general patient organisation engagement process. Our findings identify gaps in understanding of the purpose of patient involvement and whether patient organisations felt their input made a difference, the information and support provided, and if and how feedback is given to the patient organisations. Our work can help inform further research as well as continuing improvements in HTA patient engagement processes. Background Patient involvement in health technology assessment (HTA) processes is becoming more frequent. However, it is not clear how patient advocates and their disease-based patient organisations that are involved in HTA view their involvement. We report on the results of an international survey of patient advocates and members of patient organisations about their experiences and perceptions of that involvement. Methods A 16-question survey was sent out to patient advocates and members of patient groups known to be involved in HTA processes or evidence-based practice. The survey consisted of open-ended questions focusing on respondent characteristics, stage and nature of involvement, support from HTA agencies for involvement, purpose of involvement, feedback on involvement, and whether the respondents felt that their input made a difference. Results Of 16 individuals who received the survey, 15 responded. Three, from Italy, Israel and Japan, were not involved in HTA in their country. Respondents from the following countries reported involvement in HTA processes: Canada, England, Scotland, and Wales, The Netherlands, Australia, Taiwan. The respondents indicated that HTA agencies reach out to them either actively or passively, and that their involvement is often at the appraisal stage of HTA. Typically, they reported involvement as either participants in committees or providers of submissions to HTA agencies. A wide range of approaches to supporting patient involvement by the HTA agencies was identified by respondents – including personal and telephone support, online resources, training and provision of information – but the level and type of support reported was uneven across jurisdictions. Not all respondents were clear on the purpose of their involvement in HTA, although some were able to cite specific examples of how their input made a difference; members of an HTA decision-making committee appeared to have a better understanding and were able to give examples. Feedback from HTA agencies to the patient groups on their submissions is often not provided. Conclusions Although considerable progress has been made in terms of engaging patients and patient groups in HTA, gaps remain in how involvement is supported, including facilitating involvement, clarity on roles, two-way flow of information, and methods for enhancing communication between patient organisations and HTA agencies.
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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 | 0.009 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.004 | 0.000 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 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 it