Patient involvement is recognized as an integral component of health technology assessment (HTA), with patients’ lived experiences offering valuable insights that enhance the relevance, transparency, and quality of healthcare decision-making. In line with a national shift toward patient-centered care, Singapore’s Agency for Care Effectiveness (ACE) established formal processes for patient involvement in HTA in 2021. This paper describes ACE’s structured approach to identifying relevant patient organizations, co-developing processes, and building capacity to support meaningful patient input.

A stakeholder mapping exercise was undertaken to identify relevant local patient and volunteer organizations by searching the Singapore Charity Portal, hospital websites, search engines, and social media platforms. Identified organizations were screened against predefined criteria and contacted to determine their interest in ACE’s work. A process and methods guide, including survey templates, plain language materials, and training resources were co-developed with local patient organizations, drawing on international best practices, contextualized to local patients’ needs.

ACE identified 106 patient organizations across 20 health conditions. During a pilot initiative between August and December 2022, 82 patients from 10 organizations provided input into 7 HTAs. Sustained participation continued afterwards, with patient testimonials submitted for 85 percent of HTAs in the first year, increasing to 89 percent in the second year.

ACE’s patient involvement processes have improved the relevance and acceptance of HTA recommendations. Ongoing engagement with patient organizations, systematic evaluation of impact, and refinement of processes will be crucial to ensure that patient input continues to inform and advance healthcare decision-making in Singapore.

Strategies to improve accrual and reduce barriers to cancer clinical trials participation are critical for the advancement and implementation of new treatments and processes to improve cancer patient outcomes. While researchers have identified several barriers to accrual from the perspective of health care providers and patients, mechanisms to address and alleviate these concerns are needed to increase participation and interest in clinical trials.

A focus group of 9 people with lived experience of a cancer diagnosis were accrued randomly and provided with a hands-on research experience and educational resources about clinical trials, followed by a focused group discussion to capture perspectives and/or experiences with clinical trials. Focus groups were transcribed and analyzed via Braun & Clarke’s 6-phase reflexive thematic analysis.

Five key themes were identified as important to increase clinical trial accrual. These included a patient-centered approach, easily digestible educational resources, a personalized understanding of motivating factors, local outreach, and transparency on outcomes and progress of the work. Qualitative input also identified methods that could positively influence accrual rates.

Providing participants with opportunities to see first-hand how research works and data are used was noted as an overwhelmingly positive experience that could improve clinical trial accrual rates. This work confirms several previous findings with respect to patient identified barriers to participation in clinical trials and provides support and a framework for development of knowledge translation strategies to increase awareness and knowledge of the importance of clinical research to improve health outcomes for cancer patients.

Successful implementation of patient engagement (PE) and mHealth could reduce inappropriate catheter use and Catheter-associated urinary tract infections (CAUTIs). Insight into patient acceptance, impact on PE and quality of care, potential barriers and facilitators to the implementation of an mHealth intervention could improve the impact of both current and future infection prevention programs.

Implementation of the smartphone app “Participatient” was evaluated in four Dutch hospitals. Patient questionnaires assessed the acceptability of the app and its impact. Healthcare professionals (HCPs) were interviewed to evaluate the implementation process.

Acceptability constructs were evaluated positively. PE and quality of care were rated high before and after implementation. All 22 HCPs perceived barriers, eg incomplete training for HCPs and unclear communication on roles; and lack of promotion by ward professionals. The principal facilitator was the HCPs’ positive attitude toward PE.

App users perceived the Participatient app as acceptable, which fulfills a precondition for implementation. The implementation strategy evaluated in the present study was designed to fulfill all the conditions considered crucial for implementation. Nevertheless, the level of adoption remained low, and HCPs still imputed their failure to promote the use of the app to insufficiencies in training and communication and to a misfit between the app and their existing workflow. These findings underscore the need to verify whether there may be additional, less evident barriers to the adoption of mHealth tools that support PE in general, and more specifically, to the adoption of Participatient to engage patients in preventing CAUTIs.

This study explored patient involvement in healthcare decision-making in the Asia Pacific region (APAC) by identifying roles and factors influencing differences between healthcare systems. Proposed recommendations to enhance patient engagement were made.

This systematic literature review was conducted using studies from Australia, China, Japan, Malaysia, New Zealand, the Philippines, South Korea, Singapore, Taiwan, and Thailand. Studies were included if they provided data on patient involvement in health technology assessment (HTA) and/or funding decisions for medicines. Extracted data were scored according to eleven parameters adapted from the National Health Council (NHC) rubric, which assessed the level of patient involvement in healthcare system decision-making.

We identified 159 records between 2018 and 2022, including methodology guidelines from Government websites. Most mentioned parameters were patient partnership, patient-reported outcome, and mechanism to incorporate patient input. Limited information was available on diversity and patient-centered data sources. Tools for collecting patient experience included quality-of-life questionnaires, focus groups, interviews, and surveys, with feedback options like structured templates, videos, and public sessions.

Beyond input in assessment process, involvement of patients in decision-making phase has evolved within HTA bodies over time with considerable variation. Few APAC healthcare systems involve patients in the appraisal process as members of the recommendation or decision-making committee.

The findings indicate that while patient involvement in pharmaceutical reimbursement decisions exists, improvements are needed. Effective integration of patient input requires transparency, education, and resource planning. This study establishes a baseline to track progress and assess the long-term impact of patient involvement.

Health technology assessment (HTA) is a form of policy analysis that informs decisions about funding and scaling up health technologies to improve health outcomes. An equity-focused HTA recommendation explicitly addresses the impact of health technologies on individuals disadvantaged in society because of specific health needs or social conditions. However, more evidence is needed on the relationships between patient engagement processes and the development of equity-focused HTA recommendations.

The objective of this study is to assess relationships between patient engagement processes and the development of equity-focused HTA recommendations.

We analyzed sixty HTA reports published between 2013 and 2021 from two Canadian organizations: Canada’s Drug Agency and Ontario Health.

Quantitative analysis of the HTA reports showed that direct patient engagement (odds ratio (OR): 3.85; 95 percent confidence interval (CI): 2.40–6.20) and consensus in decision-making (OR: 2.27; 95 percent CI: 1.35–3.84) were more likely to be associated with the development of equity-focused HTA recommendations than indirect patient engagement (OR: .26; 95 percent CI: .16–.41) and voting (OR: .44; 95 percent CI: .26–.73).

The results can inform the development of patient engagement strategies in HTA. These findings have implications for practice, research, and policy. They provide valuable insights into HTA.

This study comprehensively reviewed reports on patient and public involvement and engagement (PPIE) in health technology assessment (HTA) overseas and identified the status and possible future measures, of PPIE in Japanese HTA.

The series of reviews targeted systematic reviews (SR#1), references in SR#1 (SR#2), and new articles after SR#1 (SR#3). The MEDLINE and Embase databases were searched through August 2024 using the terms “patient involvement/engagement,” “patient participation,” “community participation,” “public involvement/engagement,” and “health technology assessment.” The implementation details were extracted from information published on the websites of the HTA agencies.

Three review articles in SR#1, 12 references in SR#2, and 10 articles in SR#3 were selected. The opportunities for countries, including Japan, to participate in discussions on the HTA process did not differ significantly; however, information on PPIE in Japan was scarce and did not indicate their purpose and value.

Collected articles indicated that the value of PPIE in HTA includes relevance, equity, fairness, legitimacy, and capacity building. The participation of patient and public representatives in Japanese discussions since 2005 appeared to be very limited to consider PPIE in HTA. In countries that implement PPIE in HTA, the value of PPIE is explicit: the process guidelines are specific and provide an appropriate environment for input that includes education, training, and feedback. Future reforms of the Japanese system will require discussions on PPIE purpose and value, implementation, and creating an environment in which a diverse range of patients and the public can easily express their views.

We conducted a scoping review of peer-reviewed literature to describe the nature and extent of reporting on the involvement of stakeholders in early-stage translational research.

We conducted two literature searches in six databases, screened records and full-text articles, and abstracted and analyzed data from included publications. The literature searches yielded unduplicated 2,894 records. After screening, 13 articles were included.

Our review of the literature yielded rare reports of engagement in early-stage translational research. Half of included articles reported on engagement with patients, clinicians, and researchers while fewer that one in three reported on engagement with policymakers, industry, and insurers. One in four reported engagement in the publication’s acknowledgments but not in the main text. More than half drew unmeasured conclusions about the outcomes of engagement.

Our definition of early-stage translation pointed to a specific set of peer-reviewed research; our findings indicate a reporting gap and not necessarily a gap in practice. By addressing four themes–developing a shared language, identifying frameworks and principles, creating a repository of resources, and establishing a research agenda, research leaders can develop new insights about how to engage communities in early-stage translational research.

Members of many racial and ethnic population subgroups are underrepresented in clinical trials and research. We present perspectives on barriers and facilitators to study participation gathered from Hispanic participants in a population-based genetic screening study.

Seven focus groups (five in English and two in Spanish) were conducted with self-identified Hispanic participants of the Healthy Oregon Project (HOP), a large population-based cohort of adults residing in Oregon. HOP study participants complete surveys about cancer and chronic disease risks with the option to donate a saliva sample for no-cost genetic risk screening for inherited disorders. HOP invited Hispanic participants via email to join a focus group about their experiences. Focus groups, generally lasting 60–90 minutes, occurred in person and virtually. Notes were coded and content-analyzed.

49 Hispanic adults participated in the focus groups (37 women; 9 men; 3 non-binary people). Identified facilitators for HOP study participation were trust in the academic medical center leading the study, having a family member who was impacted by cancer, and receiving free genetic screening. Identified barriers were difficulty completing the family history survey, lack of understanding or familiarity with research, immigration status, and navigating technology challenges. Recommendations to improve recruitment of Hispanic populations included promoting the study at community events, clinics, or schools, simplifying the consenting process and providing patient-focused videos to demonstrate study tasks, providing real-time sample tracking, and offering monetary incentives.

Our findings can inform strategies for bolstering recruitment of Hispanic adults in biomedical research studies.

The study, conducted by the French National Authority for Health (HAS), aimed to identify available online health technology assessment (HTA) training tools for patients, specifically those used by HTA bodies (HTAbs) and major selected European and international patient and consumer groups (PCGs), to inform an HTA training approach for HAS.

A literature search, a review of selected websites, semi-structured interviews with HTAbs and patient groups, and discussion within a dedicated working group to help target the needs and preferences of patients and consumers were conducted. Online HTA training tools relating to HTA and patient and public involvement (PPI), published or translated into English or French, were included in the study results.

Eighty-two online HTA training tools for patients and consumers were selected according to the specified inclusion criteria coming from sixteen international HTAbs, nine European and international PCGs, and thirteen other organizations. Two main categories emerged: the first relating to HTA and the second relating to PPI in HTA. The formats of these tools ranged from interactive and non-interactive formats with varying accessibility and assessment methods. No journal articles mentioned explicitly the content and format of PCG training tools.

This research served as a basis for HAS to develop their own HTA training tools and materials for patients and consumers. Two training tools were subsequently developed, guided by the needs and preferences of a patient and consumer working group, and were published on the HAS website in November 2022.

In current clinical practices, there exist very few methods that allow patients to be truly engaged in violence risk assessment and management. This may hinder an individual’s experience of basic psychological needs; autonomy, competence, and relatedness.

To describe patients’ ideas on how they would develop current violence risk assessment and management practices.

The data collection took place as part of a larger project in one PICU unit specialized in the treatment of patients with psychosis and violent behavior in Finland. Individual interviews were conducted with patients (n=13) and were guided to focus on the development of violence risk assessment and management. The data were analyzed using inductive content analysis.

Patients’ ideas focused on themes related to developing patient engagement and violence risk management methods. Developing patient engagement involved noticing patient’s individuality and collaboration between a patient and staff: for instance, by shared risk assessment and individualized risk management. Developing violence risk management methods included themes about providing alternative risk management methods and developing nursing staff’s work. Suggestions were, for example, related to providing ways how to calm down, having meaningful activities during treatment days, and ensuring the realization of patient’s rights.

Patients having treatment in the PICU unit have clear and concrete ideas on how violence risk assessment and management methods could be developed further. These findings indicate, that patients need to be given a more active role in their care and thus ensure that basic psychological needs are promoted. Funding by Academy of Finland (316206 ) and TYKS foundation.

No significant relationships.