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Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.

ABSTRACT: BACKGROUND:Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. OBJECTIVE:Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. SEARCH STRATEGY AND INCLUSION CRITERIA:We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018. DATA EXTRACTION AND SYNTHESIS:Data were extracted from 91 publications, coded and thematically analysed. MAIN RESULTS:A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. DISCUSSION AND CONCLUSIONS:Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

SUBMITTER: Vat LE

PROVIDER: S-EPMC6978865 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.

Vat Lidewij Eva LE Finlay Teresa T Jan Schuitmaker-Warnaar Tjerk T Fahy Nick N Robinson Paul P Boudes Mathieu M Diaz Ana A Ferrer Elisa E Hivert Virginie V Purman Gabor G Kürzinger Marie-Laure ML Kroes Robert A RA Hey Claudia C Broerse Jacqueline E W JEW

Health expectations : an international journal of public participation in health care and health policy 20190906 1

<h4>Background</h4>Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment ...[more]

PMID: 31489988

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Project description:BACKGROUND: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? METHODS: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. RESULTS: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. CONCLUSIONS: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

Project description:BackgroundIn the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement.MethodsThe methodological framework of Arksey & O'Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated.ResultsA total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age.DiscussionThis scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects.

Project description:Introduction: Although pharmaceutical companies, regulatory authorities, and health technology assessment (HTA) agencies have been increasingly using decision-making frameworks, it is not certain whether these enable better quality decision making. This could be addressed by formally evaluating the quality of decision-making process within those organizations. The aim of this literature review was to identify current techniques (tools, questionnaires, surveys, and studies) for measuring the quality of the decision-making process across the three stakeholders. Methods: Using MEDLINE, Web of Knowledge, and other Internet-based search engines, a literature review was performed to systematically identify techniques for assessing quality of decision making in medicines development, regulatory review, and HTA. A structured search was applied using key words and a secondary review was carried out. In addition, the measurement properties of each technique were assessed and compared. Ten Quality Decision-Making Practices (QDMPs) developed previously were then used as a framework for the evaluation of techniques identified in the review. Due to the variation in studies identified, meta-analysis was inappropriate. Results: This review identified 13 techniques, where 7 were developed specifically to assess decision making in medicines' development, regulatory review, or HTA; 2 examined corporate decision making, and 4 general decision making. Regarding how closely each technique conformed to the 10 QDMPs, the 13 techniques assessed a median of 6 QDMPs, with a mode of 3 QDMPs. Only 2 techniques evaluated all 10 QDMPs, namely the Organizational IQ and the Quality of Decision Making Orientation Scheme (QoDoS), of which only one technique, QoDoS could be applied to assess decision making of both individuals and organizations, and it possessed generalizability to capture issues relevant to companies as well as regulatory authorities. Conclusion: This review confirmed a general paucity of research in this area, particularly regarding the development and systematic application of techniques for evaluating quality decision making, with no consensus around a gold standard. This review has identified QoDoS as the most promising available technique for assessing decision making in the lifecycle of medicines and the next steps would be to further test its validity, sensitivity, and reliability.

Project description:BACKGROUND:Many health care organizations around the world have implemented health information technologies (ITs) to enhance health service efficiency, effectiveness, and safety. Studies have demonstrated that promising outcomes of health IT initiatives can be obtained when patients and family members participate and engage in the adoption, use, and evaluation of these technologies. Despite knowing this, there is a lack of health care organizations using patient and family engagement strategies to enhance the use and adoption of health ITs, specifically. OBJECTIVE:This study aimed to answer the following three research questions (RQs): (1) what current frameworks or theories have been used to guide patient and family engagement in health IT adoption, use, implementation, selection, and evaluation?, (2) what studies have been done on patient and family engagement strategies in health IT adoption, use, implementation, selection, and evaluation?, and (3) what patient and family engagement frameworks, studies, or resources identified in the literature can be applied to health IT adoption, use, implementation, selection, and evaluation? METHODS:This scoping review used a five-step framework developed by Arksey and O'Malley and adapted by Levac et al. These steps include the following: (1) identifying the RQ, (2) identifying relevant studies, (3) selecting studies, (4) charting relevant data, and (5) summarizing and reporting the result. Retrieved academic and grey literature records were evaluated using a literature review software based on inclusion and exclusion criteria by two independent reviewers. If consensus was not achieved, two reviewers would resolve conflicts by discussion. Research findings and strategies were extracted from the studies and summarized in data tables. RESULTS:A total of 35 academic articles and 23 gray literature documents met the inclusion criteria. In total, 20 of the 35 included studies have been published since 2017. Frameworks found include the patient engagement framework developed by Healthcare Information and Management Systems Society and the patient and family engagement framework proposed by Carman et al. Effective strategies include providing patients with clear expectations and responsibilities and providing reimbursement for time and travel. The gray literature sources outlined key considerations for planning and supporting engagement initiatives such as providing patients with professional development opportunities, and embedding patients in existing governance structures. CONCLUSIONS:Several studies have reported their findings regarding successful strategies to engage patients and family members in health IT initiatives and the positive impact that can emerge when patients and family members are engaged in such initiatives in an effective manner. Currently, no framework has consolidated all of the key strategies and considerations that were found in this review to guide health care organizations when engaging patients and family members in a health IT-specific project or initiative. Further research to evaluate and validate the existing strategies would be of value.

Project description:BackgroundCitizen engagement in research is an emerging practice that involves members of the general public in research processes such as priority setting, planning, decision-making, research conduct, implementation, evaluation, and dissemination. Engaging citizens in research, particularly health research, increases the relevance of study findings, minimizes waste by facilitating stewardship over resources, and builds public trust in the research. While several existing frameworks guide the application of citizen engagement principles to health research, it is unclear how citizen engagement can be utilized to maximize benefits and minimize risks and challenges in health research. To address the gaps in knowledge around citizen engagement in health research, we propose a scoping review to synthesize the state of knowledge on methods to incorporate and evaluate citizen engagement in research. A protocol is presented in this manuscript.MethodsThe methodology for our scoping review is guided by Arksey and O' Malley's framework for scoping reviews, and additional recommendations by Levac and colleagues. We will include peer-reviewed and gray literature that report on citizen engagement in health research (including biomedical, clinical, health systems and services, and social, cultural, environmental and population health) and report method(s) to conduct, measure, or evaluate citizen engagement. We will systematically search electronic databases (MEDLINE, EMBASE, CINAHL, JSTOR, PsycINFO, Scopus, and Science Direct) from inception onwards and search relevant organizations' websites for additional studies, frameworks, and reports on citizen engagement. Title and abstract and full-text citations will be screened independently and in duplicate. Data will be extracted independently and in duplicate, including document characteristics, citizen engagement definitions and goals, and outcomes of citizen engagement (e.g., barriers, facilitators).DiscussionThis review will synthesize the definitions, goals, methods, outcomes, and significance of citizen engagement in health research, as well as any potential barriers, facilitators, and challenges outlined in existing literature. The findings will provide an evidence-based foundation for developing new or improved guidance for citizen engagement in health research. Overall, we anticipate that our scoping review will be a preliminary step to meaningful engagement of citizens in research and strengthen the relationship between the scientific community and the public through transparency and collaboration.Systematic review registrationOpen Science Framework https://osf.io/hzcbr .

Project description:BackgroundRecent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships.MethodsRapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article.ResultsSeventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time.ConclusionsResearchers' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.

Project description:There is a clear need for a state-of-the-art review of how public participation in climate change adaptation is being considered in research across academic communities: The Rio Declaration developed in 1992 at the UN Conference on Environment and Development (UNCED) included explicit goals of citizen participation and engagement in climate actions (Principle 10). Nation states were given special responsibility to facilitate these by ensuring access to information and opportunities to participate in decision-making processes. Since then the need for public participation has featured prominently in calls to climate action. Using text analysis to produce a corpus of abstracts drawn from Web of Science, a review of literature incorporating public participation and citizen engagement in climate change adaptation since 1992 reveals lexical, temporal, and spatial distribution dynamics of research on the topic. An exponential rise in research effort since the year 2000 is demonstrated, with the focus of research action on three substantial themes-risk, flood risk, and risk assessment, perception, and communication. These are critically reviewed and three substantive issues are considered: the paradox of participation, the challenge of governance transformation, and the need to incorporate psycho-social and behavioral adaptation to climate change in policy processes. Gaps in current research include a lack of common understanding of public participation for climate adaptation across disciplines; incomplete articulation of processes involving public participation and citizen engagement; and a paucity of empirical research examining how understanding and usage of influential concepts of risk, vulnerability and adaptive capacity varies among different disciplines and stakeholders. Finally, a provisional research agenda for attending to these gaps is described. This article is categorized under:Vulnerability and Adaptation to Climate Change > Institutions for AdaptationPolicy and Governance > Governing Climate Change in Communities, Cities, and Regions.

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Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.

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Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.

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