Meaningful Patient Engagement Research Articles

Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

BackgroundThe significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba.MethodsA cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications.ResultsResponses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research.ConclusionsParticipating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

A collaborative intervention for deprescribing: The role of stakeholder and patient engagement.

At a recent World Café Workshop on future deprescribing priorities, Canadian researchers identified that, in addition to implementation evaluation and economic analyses, high quality clinical trials require meaningful patient engagement. The aim was to develop a deprescribing intervention for collaborative primary healthcare clinics and long-term care facilities that have pharmacists integrated in these settings. This manuscript aims to provide a summary of the experience with engaging patients in the development of the deprescribing framework. Sixteen members of the research team met with six patient representatives (identified by the Maritime SPOR SUPPORT Unit) in a facilitated meeting. The event provided a welcoming environment for all participants; discussion groups ensured a mix of clinical, research and patient voice; and facilitators focused on engaging all voices equally. Initial discussions were structured around four topics: 1) identifying and prioritizing potentially inappropriate medications to reduce or stop; 2) identifying patients appropriate for deprescribing; 3) effectively communicating deprescribing with both patients and prescribers; and 4) measuring satisfaction with the framework. Subsequent discussions used group input to draft an intervention. After the event, participants engaged via e-mail, to refine the proposed intervention. The facilitated meeting provided helpful insight into patients' interests and changed the shape of the project. For example, patient representatives felt that an age restriction of 65 years of age or older was unfair, as deprescribing may help people younger than 65 years of age. Patient representatives also felt it was crucial to have resources to offer with non-pharmacologic information to increase success of deprescribing. This led to the deprescribing intervention becoming a framework for pharmacist-led deprescribing and a toolbox of supportive patient and healthcare professional resources. Overall, this process allowed for successful and meaningful patient engagement that aligned well with priorities for deprescribing clinical trials.

Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design

BackgroundTo describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake.MethodsWe used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey.ResultsPatient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients’ perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items.ConclusionThe process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.

Recruitment of caregivers into health services research: lessons from a user-centred design study

BackgroundWith patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research.MethodsWe used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers.ResultsEmploying various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – the time and compromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust.ConclusionsIn addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Engaging family stakeholders in post-discharge NICU missions

In the past few decades, there has been a cultural shift from physician-centered to patient- and family-centered engagement in both health care and research. Patient- and family-centered health care encourages collaboration and shared decision making between patients and families and their health care team. Patients and families are engaged at both the patient and system levels. Likewise, research participants and other community stakeholders are now encouraged to participate alongside of scientists and researchers during all phases of clinical and translational research—from setting the agenda to analyzing the data and disseminating the findings. Despite widespread public support for these changes by all of the various stakeholders, little has been written about how it works in practice. Janvier et al discuss the role of parents and patients post-neonatal intensive care unit discharge (resource parents and patients) in one neonatal unit in Montreal, Canada. Since 2011, 30 resource parents and patients were involved in a total of 643 activities, mostly in clinical care (n = 413), but also in research (n = 209) and teaching (n = 31). Overall, the participation of resource parents and patients was viewed positively by both resource parents and patients and health care providers. Nevertheless, 3 resource parents and patients described reliving traumatic memories during medical simulation and several providers described discomfort with this new form of collaboration. This highlights a limitation reported by the authors regarding the lack of evidence-based training curricula for both resource parents and patients and providers. Until the late 20th century, patients and research participants were passive recipients of care and research interventions. The shift to patient-centered care and community-engaged research ensured that patient and family stakeholders had “a seat at the table,” although their expected roles were often unclear. Janvier et al have gone the next step by describing meaningful engagement of resource parents and patients at various stages of health care delivery, medical education, and research design. Evaluating the impact of resource parents' and patients' engagement on neonatal and family outcomes is the obvious next step. Article page 123 ▶ Beyond a Seat at the Table: The Added Value of Family Stakeholders to Improve Care, Research, and Education in NeonatologyThe Journal of PediatricsVol. 207PreviewTo analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. Full-Text PDF

Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective.

ObjectivesTo develop and examine the content and face validity of the Patient Engagement In Research Scale (PEIRS) for assessing the quality of patient engagement in research projects from a patient partner perspective.MethodsOur team of researchers and patient partners conducted a mixed qualitative and quantitative study in three phases. Participants were English-speaking adult patients (including informal caregivers, family members, and friends) with varying experiences as partners in research projects in Canada. 1) Questionnaire items were generated following thematic analysis of in-depth interviews and published literature. 2) A three-round e-Delphi survey process via email correspondence was undertaken to refine and select the items for a provisional PEIRS. 3) Two rounds of cognitive interviewing elicited participants’ understanding and opinions of each item and the structure of the PEIRS.ResultsOne hundred and twenty items were generated from 18 interviews and organized across eight themes of meaningful engagement of patients in health research to form an initial questionnaire. The e-Delphi survey and cognitive interviewing each included 12 participants with a range of self-reported diseases, health-related conditions, and use of healthcare services. The e-Delphi survey yielded a 43-item provisional PEIRS. The PEIRS was then reduced to 37 items organized across seven themes after 1) refinement of problems in its instructions and items, and 2) the combining of two themes into one.ConclusionsWe developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.

Improving Patient-Provider Partnerships across the Healthcare System

Background: Patient engagement has been identified as a central element of patient-centred care, and engaged patients are more likely to understand their health conditions, participate in treatment plans, and report greater satisfaction with their healthcare 1. Despite the widely recognized benefits of a more patient-centred healthcare system, there is a lack of consensus on how this can be achieved. Patients and their caregivers wish to be engaged in decision-making, but this is often not well accommodated in existing practice models. In prior work, we synthesized available evidence around engagement of older adults in healthcare decision-making into the “CHOICE” Patient Engagement Framework 2. The CHOICE framework emphasizes the development of meaningful relationships that allow mutual understanding of values and preferences. In partnership with patients, caregivers and health care providers, this current project aimed to answer the following questions: 1 How do the CHOICE principles correspond with actual experiences of engagement? 2 What factors currently facilitate or hinder engagement? and 3 What resources and materials are needed to support patient engagement? Methods: We conducted observations and interviews in two healthcare settings with providers n=10 and older adults n=15 to understand current perspectives, practices, and facilitating/hindering factors related to patient engagement. Health care providers n=120 were also consulted in a facilitated one-day workshop, with notes taken of small group discussion and individual feedback. Observation and interview data were analyzed using emergent coding as well as directed coding guided by the CHOICE Framework. Results: Experiences of engagement were consistent with the CHOICE Framework, and confirmed the importance of: understanding the whole patient; recognizing the importance of family caregivers; and training health care providers to engage patients and families in a meaningful way. System constraints, lack of education, and family dynamics present challenges to engagement of patients and families in decision-making. Flexibility in care approaches, knowledgeable care providers, and the building of trusting relationships facilitate more meaningful engagement. Healthcare providers indicated a need for more education on strategies for meaningful engagement of patients and families in decision-making; preferred education modalities include hands-on workshops and e-learning modules. Discussion & Conclusions: Our study found that elements of the CHOICE framework are relevant to the development of meaningful patient-provider engagement. Resources and education may facilitate these partnerships, but current practice and system constraints will challenge these efforts. Lessons Learned: In the current health care system, regardless of strategies and resources provided; it is difficult to take the time to have meaningful conversations with patients during clinic appointments. Building trusting relationships is key to successful patient-provider partnerships. Limitations: Work to date has been limited to primary and community care settings. Suggestions for Future Research: The resources and materials co-designed in this project will be implemented as part of a larger study to improve patient and family caregiver engagement in primary care settings. In future work, we aim to link engagement strategies, which enable mutual understanding of values and preferences, with tools for shared decision-making that support consideration of available research evidence.

Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network.

Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement. We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings. The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states. Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts. The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.

Patient and Family Engagement in the ICU. Untapped Opportunities and Underrecognized Challenges.

The call for meaningful patient and family engagement in health care and research is gaining impetus. Healthcare institutions and research funding agencies increasingly encourage clinicians and researchers to work actively with patients and their families to advance clinical care and research. Engagement is increasingly mandated by healthcare organizations and is becoming a prerequisite for research funding. In this article, we review the rationale and the current state of patient and family engagement in patient care and research in the ICU. We identify opportunities to strengthen engagement in patient care by promoting greater patient and family involvement in care delivery and supporting their participation in shared decision-making. We also identify challenges related to patient willingness to engage, barriers to participation, participant risks, and participant expectations. To advance engagement, clinicians and researchers can develop the science behind engagement in the ICU context and demonstrate its impact on patient- and process-related outcomes. In addition, we provide practical guidance on how to engage, highlight features of successful engagement strategies, and identify areas for future research. At present, enormous opportunities remain to enhance engagement across the continuum of ICU care and research.

What do stakeholders expect from patient engagement: Are these expectations being met?

BackgroundMeaningful patient engagement (PE) in medicines development and during the life cycle of a product requires all stakeholders have a clear understanding of respective expectations.ObjectiveA qualitative survey was undertaken to understand stakeholder expectations.DesignThe survey explored 4 themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 categories: policymakers/regulators; health‐care professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; and academic researchers.ResultsFifty‐nine interviews were conducted across a range of geographies, PE experience and job seniority/role. There was consensus across stakeholders on meaning of PE; importance of promoting PE to a higher level than currently; need for a more structured process and guidance. There was little consensus on stakeholder expectations and roles. Policymakers/regulators were expected by others to drive PE, create a framework and facilitate PE, provide guidelines of good practice and connect stakeholders, but this expectation was not shared by the policymakers/regulators group. HCPs were seen as the link between patients and other stakeholders, but HCPs did not necessarily share this view.Discussion and conclusionsDespite broad stakeholder categories, clear themes emerged: there is no “leader”; no stakeholder has a clear view on how to meaningfully engage with patients; there are educational gaps; and a structure and guidance for PE is urgently required. Given the diversity of stakeholders, there needs to be multistakeholder collaborative leadership. Effective collaboration requires consensus on roles, responsibilities and expectations to synergize efforts to deliver meaningful PE in medicines life cycle.

The prevalence of patient engagement in published trials: a systematic review

Plain English summaryWith the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement?We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported.BackgroundPatient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181–94, JAMA 2012, 307:1587–8]. Since POR’s inception, questions have been raised as to how best to achieve this goal.We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials.MethodsThe MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included.ResultsOf the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results.ConclusionsThe prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined.

A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies.

For the past two decades, the National Cancer Institute (NCI) has supported the involvement of patient advocates in both internal advisory activities and funded research projects to provide a patient perspective. Implementation of the inclusion of patient advocates has varied considerably, with inconsistent involvement of patient advocates in key phases of research such as concept development. Despite this, there is agreement that patient advocates have improved the patient focus of many cancer research studies. This commentary describes our experience designing and pilot testing a new framework for patient engagement at SWOG, one of the largest cancer clinical trial network groups in the United States and one of the four adult groups in the NCI's National Clinical Trials Network (NCTN). Our goal is to provide a roadmap for other clinical trial groups that are interested in bringing the patient voice more directly into clinical trial conception and development. We developed a structured process to engage patient advocates more effectively in the development of cancer clinical trials and piloted the process in four SWOG research committees, including implementation of a new Patient Advocate Executive Review Form that systematically captures patient advocates' input at the concept stage. Based on the positive feedback to our approach, we are now developing training and evaluation metrics to support meaningful and consistent patient engagement across the SWOG clinical trial life cycle. Ultimately, the benefits of more patient-centered cancer trials will be measured in the usefulness, relevance, and speed of study results to patients, caregivers, and clinicians.

What does meaningful look like? A qualitative study of patient engagement at the Pan-Canadian Oncology Drug Review: perspectives of reviewers and payers.

Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.

Emerging Good Practices for Transforming Value Assessment: Patients’ Voices, Patients’ Values

BackgroundPatient engagement is a transformative strategy for improving value assessment. US value framework developers have increased engagement activities, but more needs to be learned about how to best achieve meaningful patient engagement in value assessment. The objective was to glean good practices in patient engagement emerging from patient community experiences, to be used in value assessment. MethodsThe National Health Council Value Workgroup conducted a survey and held a focus group with its member advocacy organizations to gather experiences with value framework developers and views on emerging good practices. ResultsTen of 13 organizations completed the survey; reporting 13 interactions with four framework developers. Most rated experiences as “good” to “very good.” Emerging good practices included (1) engage early; (2) engage a range of patients; (3) leverage patient-provided information, data resources, and outreach mechanisms; (4) be transparent; and (5) appreciate and accommodate resource constraints. Twelve of 13 organizations participated in the focus group, and this produced 30 emerging good practices in four areas: (1) timing; (2) methodology and data; (3) partnering; and (4) characterizing engagement. DiscussionPatient engagement was limited in early development of value frameworks but has increased in the past few years. Patient groups report positive experiences that can serve as emerging good practices. These groups also reported experienced challenges in their interactions and recommended good practices to mitigate those challenges. Conclusions/RecommendationsThe growing pool of patient engagement experiences can be translated into good practices to advance a patient-centered, value-driven health care ecosystem. Lessons learned from these early experiences can help establish recommend emerging good practices that can eventually result in best practices and standards in the field.

An empirically based conceptual framework for fostering meaningful patient engagement in research.

BackgroundPatient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data.ObjectiveTo address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective.MethodsWe conducted a qualitative secondary analysis of in‐depth interviews with 18 patient research partners from a research centre‐affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team.ResultsParticipants’ experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team.ConclusionsThe PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient‐researcher partnerships are led by researchers with little experience of engaging patients in research.

Virtual care policy recommendations for patient-centred primary care: findings of a consensus policy dialogue using a nominal group technique

Background The development of new virtual care technologies (including telehealth and telemedicine) is growing rapidly, leading to a number of challenges related to health policy and planning for health systems around the world. Methods We brought together a diverse group of health system stakeholders, including patient representatives, to engage in policy dialogue to set health system priorities for the application of virtual care in the primary care sector in the Province of Ontario, Canada. We applied a nominal group technique (NGT) process to determine key priorities, and synthesized these priorities with group discussion to develop recommendations for virtual care policy. Methods included a structured priority ranking process, open-ended note-taking, and thematic analysis to identify priorities. Results Recommendations were summarized under the following themes: (a) identify clear health system leadership to embed virtual care strategies into all aspects of primary and community care; (b) make patients the focal point of health system decision-making; (c) leverage incentives to achieve meaningful health system improvements; and (d) building virtual care into streamlined workflows. Two key implications of our policy dialogue are especially relevant for an international audience. First, shifting the dialogue away from technology toward more meaningful patient engagement will enable policy planning for applications of technology that better meet patients’ needs. Second, a strong conceptual framework on guiding the meaningful use of technology in health care settings is essential for intelligent planning of virtual care policy. Conclusions Policy planning for virtual care needs to shift toward a stronger focus on patient engagement to understand patients’ needs.

Questioning patient engagement: research scientists' perceptions of the challenges of patient engagement in a cardiovascular research network.

BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Making Patient Engagement a Reality.

Patients are increasingly recognised as the true customers of healthcare. By providing insights and perspectives, patients can help the wider healthcare community better understand their needs and ultimately enhance the value of healthcare solutions being developed. In the development of new medicines, for example, meaningful patient engagement can enable the pharmaceutical industry, healthcare providers and other stakeholders to achieve more meaningful health outcomes. While both the pharmaceutical industry and regulators have achieved some progress in incorporating patient perspectives into their activities, the lack of standardised best practices and metrics has made it challenging to achieve consistency and measure success in patient engagement. Practical guidance for patient engagement can facilitate better interactions between patients or patient groups and other collaborators, e.g. industry, regulators and other healthcare stakeholders. Accordingly, UCB has developed an internal model for Patient Group Engagement incorporating four key principles, based on shared ambition, transparency, accountability and respect, essential for effective collaborations.

Patient and Family Engagement in Designing and Implementing a Weaning Trial: A Novel Research Paradigm in Critical Care

The call for meaningful patient and family engagement in research has recently gained considerable momentum. This article defines patient and family engagement broadly and specifically in clinical research. Using a multicenter, North American weaning trial as an exemplar, we describe our early experiences as clinical researchers with patient and family engagement. The role of our Patient and Family Advisory Committee in trial design and implementation is illustrated. Through our experiences, we share our insights regarding the perceived opportunities and also highlight some challenges associated with engaging patients and family engagement in critical care research. Although "engagement science" is in its infancy, engaging patients and families in research holds promise as a novel research paradigm that will not only provide new insights into the questions, methods, and outcomes used in ICU research, but it will also make investments in research more accountable and ensure a strong "patient- and family-centered focus" of our research.

Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study

ObjectivesExplore the experience of patients undergoing colorectal surgery within an Enhanced Recovery After Surgery (ERAS) programme. Use these experiential data to inform the development of a framework to support ongoing,...