Involvement of Patients and Medical Professionals in the Assessment of Relative Effectiveness: A Need for Closer Cooperation

ObjectivesInvolvement of patients and medical professionals in assessment of relative effectiveness (relative effectiveness assessment) contributes to an efficient and effective health technology assessment (HTA) process and supports acceptance and implementation of the outcome. This study aimed to analyze stakeholder involvement in assessing relative effectiveness and how the parties involved value this collaboration.MethodsThis is a document analysis of all drug assessments completed in 2019 (20) by the public HTA agency of The Netherlands, enriched with semistructured interviews with employees of the HTA agency (18) and representatives of patient (5) and medical (11) associations involved in these assessments. Data were analyzed, coded, and categorized.ResultsIn almost half of the assessments, there was no coordination with the medical associations at the start of the relative effectiveness assessment and no patient associations involved in this phase. During the assessment procedure, patient and medical associations were always asked to comment on the draft report. Nevertheless, the strict 5-day deadline that the HTA agency uses as a response period often hampered a proper response and involvement. According to interviewees of the HTA agency, this leads to a great diversity in the substantive quality of their input. Patient and medical associations indicated that the HTA agency relies too much on “paper knowledge,” which leads to a (perceived) lack of alignment with clinical practice.ConclusionsThe limited involvement results in a lack of coordination and mutual trust. Optimizing involvement of patients and medical professionals in HTA practice requires effort from all parties involved. Procedural adjustments and better coordination, especially at the start of the assessment, would probably improve cooperation.     

Designing and Implementing Deliberative Processes for Health Technology Assessment: A Good Practices Report of a Joint HTAi/ISPOR Task Force

ObjectivesDeliberative processes for health technology assessment (HTA) are intended to facilitate participatory decision making, using discussion and open dialogue between stakeholders. Increasing attention is being given to deliberative processes, but guidance is lacking for those who wish to design or use them. Health Technology Assessment International (HTAi) and ISPOR—The Professional Society for Health Economics and Outcomes Research initiated a joint Task Force to address this gap.MethodsThe joint Task Force consisted of 15 members with different backgrounds, perspectives, and expertise relevant to the field. It developed guidance and a checklist for deliberative processes for HTA. The guidance builds upon the few, existing initiatives in the field, as well as input from the HTA community following an established consultation plan. In addition, the guidance was subject to 2 rounds of peer review.ResultsA deliberative process for HTA consists of procedures, activities, and events that support the informed and critical examination of an issue and the weighing of arguments and evidence to guide a subsequent decision. Guidance and an accompanying checklist are provided for (i) developing the governance and structure of an HTA program and (ii) informing how the various stages of an HTA process might be managed using deliberation.ConclusionsThe guidance and the checklist contain a series of questions, grouped by 6 phases of a model deliberative process. They are offered as practical tools for those wishing to establish or improve deliberative processes for HTA that are fit for local contexts. The tools can also be used for independent scrutiny of deliberative processes.     

Patient Engagement in Neurological Clinical Trials Design: A Conference Summary

Objectives

The conference objectives included educating patients and advocates about clinical trials, educating the clinical research community about patient perspectives on participating in clinical trial design, and identifying strategies to increase participation in clinical trial design for neurological disorders.

Design

Observations were noted during a 1‐day conference attended by patients, patient advocates, clinical trial staff, and investigators. The conference offered didactic sessions, small, and large group discussions.

Participants

Conference participants were patients, patient advocates, clinical trial staff, students, and investigators interested in engaging patients in clinical trial design for neurological disorders.

Measures

Conference participants were asked to consider lessons learned that could increase patient engagement in clinical trial design.

Results

We found that there is growing interest in including patients in the design of clinical trials for neurological disorders. Several themes emerged on how to move forward: networking; the multifaceted roles of advocates in research; training and education; creating patient–researcher partnerships; and clinical trials regulation issues.

Conclusions

The conference provided a forum for dialogue regarding stakeholder engagement in the design of clinical trials for neurological disorders. This experience provides a template for replication and dissemination of this conference and informs next steps to accelerate the pathway from dialogue to action.     

社交媒体时代企业社会责任实践的机遇与挑战

近年来兴起的社交媒体已经超出了“社交”功能,并逐渐在商业、行政、教育等领域得到越来越广泛的应用.企业社会责任的履行已被视为企业实现可持续发展的重要途径,认识社交媒体对企业社会责任活动的影响有助于企业提升社会责任活动的效果.该文探讨了社交媒体的应用给企业社会责任实践带来的机遇与挑战,以促进企业在社会责任实践中合理、高效地运用社交媒体,获取可持续竞争优势.     

电子健康档案建设的利益相关者分析

首次采用利益相关者分析方法,研究和探讨我国电子健康档案建设过程中主要利益相关者对政策的认知、立场、利益、资源、权力和领导能力,总结和归纳主要利益相关者对电子健康档案发展的影响,并以解决实际问题、促进各方利益平衡为出发点提出政策建议。     

Behind the Scenes: The Justifications for Opioid Maintenance Treatment in Finland

Opioid maintenance treatment (OMT) has been developed within drug dependency treatment in Finland over the last 20 years. This study, based on interviews with 15 stakeholders and content analysis of 174 newspaper texts, draws on Boltanski and Thévenot's theory of justification to explore ways in which OMT has been justified and identifies the main actors contributing to its development. Multiple factors, involving different actors, have influenced the development process, reflecting the ethos of contemporary Finnish welfare and health policy. Currently, the main justifications for choosing OMT treatment seem to emerge from a neoliberal frame of understanding.     

A comparative study of stakeholder views on take-home naloxone services

Background: The limited research to date exploring views on naloxone provision has featured a range of stakeholders including staff, clients, family and carers. However, these studies are often conducted in isolated samples with limited scope for comparison. This study aimed to simultaneously explore and compare the views of clients, carers and professionals on naloxone distribution and the issues associated with it.

Methods: Service providers, service-users and their family/friends were invited to complete a questionnaire which quantitatively measured their views on naloxone provision to service-users and their family/friends.

Results: The majority of those surveyed felt that the supply of naloxone to service-users and their family/friends was a good idea and would help reduce drug-related deaths, but only after appropriate training on resuscitation techniques and administration of naloxone. Willingness to use the training and call an ambulance in an overdose situation were also high across all groups. Despite being at the highest risk of overdose, service-users were least likely to be aware of naloxone provision.

Conclusions: There is strong support across stakeholders for the training and supply of naloxone to service-users and their family/friends. Despite this, awareness of naloxone and its uses, among service-users in particular, is limited and should be tackled as a priority.