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In modern mechanical engineering, the number of parts with spatially complex surfaces is growing, the shape of which is determined analytically according to certain criteria. They are most widely used in the energy, aviation, tool industries (turbine blades, unicycles). With the current practice of processing such parts on CNC machines, when developing control programs, the analytically calculated shape of the surfaces is replaced by an approximate graphical model, which is used to calculate tool trajectories. This practice is due to the historically existing in the 1970-90s the capabilities of electronics and electrically driven devices. Despite the fundamentally new modern possibilities of computer control and electric drive devices, CNC machines retained the traditional initial principle of surface shaping using approximation and interpolation methods. At the same time, already at the stage of technological preparation of control programs, certain assumptions and losses in accuracy are assumed. The solution of this problem is relevant in connection with the current trend of increasing requirements for the accuracy of critical parts with spatially complex surfaces. The article proposes the principle of alternative control of shaping feeds when milling parts with spatially complex surfaces using the form of specifying the surface in an analytical form. The application of this principle excludes intermediate stages associated with the transformation of the analytical form of the task into a graphic one, the choice of coordinates of reference points and the interpolation of elementary sections. It is proposed, based on the proposed functional relationship between the geometric shape of a spatially complex surface and the established ratio of the components of the contour feed, based on the use of modern capabilities of computing devices and an electric drive, to provide a fundamentally new approach to shaping. The use of the proposed approach ensures complete automation of the preparation of control programs. [ABSTRACT FROM AUTHOR]

Objectives: Canada has one of the highest age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Large patient volumes and limited resources have created challenges concerning the quality of IBD care, but little is known about patients' experiences. This paper aimed to better understand patient-perceived barriers to IBD care., Methods: An exploratory qualitative approach was used for this study. Fourteen focus groups (with 63 total participants) were co-facilitated by a researcher and patient research partner across eight Canadian provinces in 2018. Patients diagnosed with IBD (>18 years of age) and their caregivers were purposefully recruited through Crohn's and Colitis Canada, gastroenterology clinics and communities, and national social media campaigns. Focus group sessions were recorded, transcribed, and analyzed using thematic analysis., Results: Most participants self-identified as being white and women. The analysis generated four key themes regarding patient-perceived barriers and gaps in access to IBD care: (1) gatekeepers and their lack of IBD knowledge, (2) expenses and time, (3) lack of holistic care, and (4) care that is not patient-centered. An additional four themes were generated on the topic of patient-perceived areas of health system improvement for IBD care: (1) direct access to care, (2) good care providers, (3) electronic records and passports, and (4) multidisciplinary care or an 'IBD dream team'., Conclusions: This research contributes to the limited global knowledge on patients' experiences accessing IBD care. It is valuable for the development of care plans and policies to target gaps in care. Patients have identified system-level barriers and ideas for improvement, which should be taken into consideration when implementing system redesign and policy change., Competing Interests: Declaration of conflicting interestsThe authors declare that there are no conflicts of interest.

Background: Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system. This e-PROM system is an electronic system for the administration of PROMs to patients with CAD and the delivery of the summarized information to their care providers to facilitate patient-physician communication and shared decision-making. This electronic platform was designed to be accessible via web-based and hand-held devices. Heuristic and user acceptance evaluation were conducted with patients and attending care providers., Results: The APPROACH e-PROM system was co-developed with patients and care providers, research investigators, informaticians and information technology experts. Five PROMs were selected for inclusion in the online platform after consultations with patient partners, care providers, and PROMs experts: the Seattle Angina Questionnaire, Patient Health Questionnaire, EuroQOL, and Medical Outcomes Study Social Support Survey, and Self-Care of Coronary Heart Disease Inventory. The heuristic evaluation was completed by four design experts who examined the usability of the prototype interfaces. User acceptance testing was completed with 13 patients and 10 cardiologists who evaluated prototype user interfaces of the e-PROM system., Conclusion: Both patients and physicians found the APPROACH e-PROM system to be easy to use, understandable, and acceptable. The APPROACH e-PROM system provides a user-informed electronic platform designed to incorporate PROMs into the delivery of individualized cardiac care for persons with CAD., (© 2024. The Author(s).)

Background: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence., Methods: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study., Results: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable., Conclusion: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs., (© 2024. The Author(s).)

Background: Inclusiveness, Support, Mutual Respect and Co-Build are the four pillars of patient engagement according to the Strategy for Patient-Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re-Purposing the Ordering of Routine laboratory Tests (RePORT)'., Methods: Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co-chairs of the PAC. Patient research partners were offered training, support and tailored modalities of compensation to actively engage with the PAC. Regular member check-ins occurred through reflexivity and a formal evaluation of PAC member engagement., Results: The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course-changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co-chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co-design approaches yielded rich research outputs., Conclusions: Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co-Build for meaningful patient engagement., Patient or Public Contribution: Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co-development of a patient engagement strategy using a Human-Centered Design process., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders., Methods: We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers ( n = 5), and clinicians ( n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages., Results: PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data., Conclusion: The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts., Competing Interests: Deborah A. Marshall discloses consulting fees from the Office for Health Economics, Novartis, and Analytica during the conduct of this study. She also received support from Illumina for travel expenses to attend a meeting. Nitya Suryaprakash and Karis L. Barker received reimbursement of expenses related to conference attendance from the SPOR IMAGINE Chronic Disease Network. All other authors declare no conflicts of interest relevant to the content of this article., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Canadian Association of Gastroenterology.)

Objective: The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research., Design: We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis., Setting: The study was conducted online., Participants: Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study., Main Outcome Measures: Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE., Results: Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups., Conclusions: Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group., Competing Interests: Competing interests: DAM discloses consulting fees from the Office for Health Economics, Novartis and Analytica during the conduct of this study. She also received support from Illumina for travel expenses to attend a meeting. NS and KLB received reimbursement of expenses related to conference attendance from the SPOR IMAGINE Chronic Disease Network. All other authors declare no conflicts of interest relevant to the content of this article., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Background: In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers., Methods: The RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo., Results: A total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study., Conclusions: Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward., (© 2023. The Author(s).)

Introduction: Patient engagement in patient-oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co-build an interactive, hands-on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co-building the training programme., Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3-month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi-structured interviews. Survey data were analysed descriptively and interview data were analysed thematically., Results: The Working Group co-built and co-delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together-communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group., Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co-build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application., Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co-build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co-learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co-building more PRP-centred learning programmes and tools going forward., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Strategies incorporating objective disease monitoring in Crohn's disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This qualitative study aimed to explore patient experiences and preferences of CD monitoring to inform monitoring strategies, improve patient engagement, and optimize a patient-centered approach to care., Methods: This study used a patient-oriented, qualitative descriptive design. Convenience and snowball sampling were used to recruit adult participants diagnosed with CD who had experience with at least 2 types of disease monitoring. Online focus groups were conducted and data were analyzed using thematic analysis., Results: This international study included 37 participants from Australia, Canada, United Kingdom, and the United States. Overall, participants preferred more noninvasive types of monitoring [eg, intestinal ultrasound (IUS)] but were willing to undergo more invasive monitoring (eg, colonoscopy) if required. To improve disease monitoring, participants wanted increased access to IUS, establishment of a patient-centered interdisciplinary team and access to information and self-testing. Participants identified challenges with communication between patients and providers and stressed the importance of participating in shared decision making and being equal team members in their care., Conclusions: It is imperative to incorporate patient-driven preferences into how we can best structure monitoring strategies, to ensure equitable access to those preferred modalities and embrace a shared decision-making approach to disease management in CD., Competing Interests: N.R., S.Z., and S.R. declare no conflict of interest. M.Dolinger is a consultant for Neurologica Corp., a subsidiary of Samsung Electronics Co., Ltd. B.C. has served as a consultant, advisory board member or received grants from AbbVie, Ferring, Janssen, Pfizer, Fresenius Kabi, Falk Pharma, Gilead, Celgene, Sandoz, and Takeda. R.W.: Personal fees from AbbVie, Janssen, Pfizer, Takeda, and Alimentiv outside the submitted work. M.Dubinsky has received consulting fees from AbbVie Inc., Boehringer Ingelheim International GmbH, Bristol-Myers Squibb Company, Celgene Corp, Eli Lilly and Company, F. Hoffman-La Roche Ltd, Genentech Inc., Gilead, Janssen Global Services LLC, Pfizer Inc., Prometheus Biosciences, Takeda Pharmaceutics USA Inc., and UCB SA; contracted research with AbbVie Inc., Janssen Global Services LLC, Pfizer Inc., and Promethesius Biosciences; Ownership with Trellus Health Inc.; licensing fee with Takeda Pharmaceuticals, USA Inc. K.N. reports advisory board fees from AbbVie, Janssen, Pfizer, Ferring, Takeda, Celltrion, and Fresnius Kabi; speaker’s fees from AbbVie, Janssen, Takeda, and Pfizer; and research support from AbbVie and Pfizer., (© The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.)

Objective: To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach., Design: This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks. This phase included surveys and one-on-one semi-structured interviews aimed to further explore the use of PPEET in this context. Findings from the survey and interviews informed the development of PFE-Is; (3) a Delphi consensus process using a modified RAND/UCLA Appropriateness Method to identify and refine a core set of PFE-Is., Participants: The consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare leadership., Results: From an initial list of 33 evidence-based PFE-Is identified, the consensus process yielded 18 final indicators. These PFE-Is were grouped into seven themes: communication, comfort to contribute, support needed for engagement, impact and influence of engagement initiative, diversity of perspectives, respectful engagement, and working together indicators., Conclusions: This group of final patient, family and health system leaders informed indicators can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Canada has the highest global age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Due to IBD patient volumes and limited resources, challenges to timely access to specialty care have emerged. To address this gap, the aim of this paper was to understand the experiences and perspectives of persons living with IBD with a focus on accessing health care., Methods: Using a qualitative descriptive approach, patients diagnosed with IBD (≥18 years of age) were purposively sampled from rural and urban gastroenterology clinics and communities across Canada. Co-facilitated by a researcher and patient research partner, 14 focus groups were recorded, transcribed, and coded for themes. Thematic analysis was used to ascertain the congruence or discordance of IBD specialty care access experiences., Results: A total of 63 individuals participated in the study. The majority of participants were female (41/63, 65%) and from urban/suburban regions (33/63, 52%), with a mean age of 48.39 (range 16-77 years). The analysis generated three main themes: (1) need for patient to be partner, (2) adapting IBD care access to individual context, and (3) patient-defined care priorities should guide access to IBD care., Conclusions: The complexity of specialty care access for IBD patients cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the impact of these factors on accessing care. Using a patient-centered exploration of barriers and facilitators, IBD specialty care access in Canada can be better understood and improved on provincial and national levels., (© The Author(s) 2022. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.)

The prevalence of inflammatory bowel diseases (IBD), Crohn's disease and ulcerative colitis, in Canada, is over 0.75% in 2021. Many individuals with IBD are immunocompromised. Consequently, the World Health Organization's declaration of a global pandemic uniquely impacted those with IBD. Crohn's and Colitis Canada (CCC) formed the COVID-19 and IBD Taskforce to provide evidence-based guidance during the pandemic to individuals with IBD and their families. The Taskforce met regularly through the course of the pandemic, synthesizing available information on the impact of COVID-19 on IBD. At first, the information was extrapolated from expert consensus guidelines, but eventually, recommendations were adapted for an international registry of worldwide cases of COVID-19 in people with IBD. The task force launched a knowledge translation initiative consisting of a webinar series and online resources to communicate information directly to the IBD community. Taskforce recommendations were posted to CCC's website and included guidance such as risk stratification, management of immunosuppressant medications, physical distancing, and mental health. A weekly webinar series communicated critical information directly to the IBD community. During the pandemic, traffic to CCC's website increased with 484,755 unique views of the COVID-19 webpages and 126,187 views of the 23 webinars, including their video clips. CCC's COVID-19 and IBD Taskforce provided critical guidance to the IBD community as the pandemic emerged, the nation underwent a lockdown, the economy reopened, and the second wave ensued. By integrating public health guidance through the unique prism of a vulnerable population, CCC's knowledge translation platform informed and protected the IBD community., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Canadian Association of Gastroenterology.)

Persons with inflammatory bowel disease (IBD) make up more than 0.75% of the Canadian population in 2021. Early in the COVID-19 pandemic, individuals with IBD, particularly those on immunosuppressive therapies, were concerned that their health status may place them at higher risk of contracting COVID-19 or experiencing more severe disease course if infected with SARS-CoV-2. In response, Crohn's and Colitis Canada developed the COVID-19 and IBD Taskforce in March 2020 to rapidly synthesize the evolving knowledge of COVID-19 as relevant to Canadians with IBD. The Taskforce communicated expert information directly to the Canadian IBD community through online tools and a webinar series. In order to understand the full impact of COVID-19 on the IBD community, Crohn's and Colitis Canada commissioned a policy report that was informed through a systematic literature review and synthesized across working groups along the following domains: Epidemiology, Children and Expectant Mothers with IBD, Seniors with IBD, Mental Health, Risk Factors and Medications, Vaccines, and Healthcare Delivery during the Pandemic and the Future Model of IBD Care. This report from Canadian physicians, researchers, and IBD community representatives highlights the physical, mental, and health systems impact of COVID-19 on the entire spectrum of the IBD community, including children, adolescents, adults, seniors, and pregnant people with IBD. This executive summary provides an overview of the crucial information from each of the chapters of the policy report, supplemented with additional information made available through Crohn's and Colitis Canada's webinar-based knowledge translation platform., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Canadian Association of Gastroenterology.)

Importance: International efforts are being made towards a person-centred care (PCC) model, but there are currently no standardised mechanisms to measure and monitor PCC at a healthcare system level. The use of metrics to measure PCC can help to drive the changes needed to improve the quality of healthcare that is person centred., Objective: To develop and validate person-centred care quality indicators (PC-QIs) measuring PCC at a healthcare system level through a synthesis of the evidence and a person-centred consensus approach to ensure the PC-QIs reflect what matters most to people in their care., Methods: Existing indicators were first identified through a scoping review of the literature and an international environmental scan. Focus group discussions with diverse patients and caregivers and interviews with clinicians and experts in quality improvement allowed us to identify gaps in current measurement of PCC and inform the development of new PC-QIs. A set of identified and newly developed PC-QIs were subsequently refined by Delphi consensus process using a modified RAND/UCLA Appropriateness Method. The international consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare quality experts., Results: From an initial 39 unique evidence-based PC-QIs identified and developed, the consensus process yielded 26 final PC-QIs. These included 7 related to structure, 16 related to process, 2 related to outcome and 1 overall global PC-QI., Conclusions: The final 26 evidence-based and person-informed PC-QIs can be used to measure and evaluate quality incorporating patient perspectives, empowering jurisdictions to monitor healthcare system performance and evaluate policy and practice related to PCC., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Gut microbiome and diet may be important in irritable bowel syndrome (IBS), inflammatory bowel disease (IBD) and comorbid psychiatric conditions, but the mechanisms are unclear. We will create a large cohort of patients with IBS, IBD and healthy controls, and follow them over time, collecting dietary and mental health information and biological samples, to assess their gastrointestinal (GI) and psychological symptoms in association with their diet, gut microbiome and metabolome., Methods and Analysis: This 5-year observational prospective cohort study is recruiting 8000 participants from 15 Canadian centres. Persons with IBS who are 13 years of age and older or IBD ≥5 years will be recruited. Healthy controls will be recruited from the general public and from friends or relatives of those with IBD or IBS who do not have GI symptoms. Participants answer surveys and provide blood, urine and stool samples annually. Surveys assess disease activity, quality of life, physical pain, lifestyle factors, psychological status and diet. The main outcomes evaluated will be the association between the diet, inflammatory, genetic, microbiome and metabolomic profiles in those with IBD and IBS compared with healthy controls using multivariate logistic regression. We will also compare these profiles in those with active versus quiescent disease and those with and without psychological comorbidity., Ethics and Dissemination: Approval has been obtained from the institutional review boards of all centres taking part in the study. We will develop evidence-based knowledge translation initiatives for patients, clinicians and policymakers to disseminate results to relevant stakeholders. Trial registration number: NCT03131414., Competing Interests: Competing interests: PM holds the Audrey Campbell Chair in Ulcerative Colitis Research. PM, PB and AF have no conflicts of interest. CNB is supported in part by the Bingham Chair in Gastroenterology. He is on Advisory Boards for AbbVie Canada, Janssen Canada, Takeda Canada, Pfizer Canada. He is a consultant for Mylan Pharmaceuticals. He is receiving educational grants from AbbVie Canada, Pfizer Canada, Shire Canada, Takeda Canada, Janssen Canada. Speaker’s panel for AbbVie Canada, Janssen Canada, Takeda Canada, and Medtronic Canada. Received research funding from AbbVie Canada. JDR receives research funding from Pfizer. LAD is on the Advisory Boards for Janssen Canada, AbbVie Canada, Pfizer Canada and Takeda Canada. DAM holds a Canada Research Chair (2008–2018) and the Arthur J.E. Child Chair and receives travel reimbursement through Illumina for meetings of the Global Economics and Evaluation of Clinical Genomics Sequencing Working Group. SV was supported by an educational grant from Allergan. SZ is a patient research partner and received a grant from Takeda Canada., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co-design a patient and family engagement framework., Methods: Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure., Results: The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement., Conclusion: The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Objectives: The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta., Design: This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research., Setting: Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada., Participants: A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11)., Results: Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases., Conclusions: In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care., Methods: Patient co-investigators and a researcher co-designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability., Results: A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well-educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self-fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks., Conclusion: The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes., (© 2019 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Background: With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members., Methods: Patient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted., Results: After eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities., Conclusions: The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.

Objectives: The shift to the patient-centred care (PCC) model as a healthcare delivery paradigm calls for systematic measurement and evaluation. In an attempt to develop patient-centred quality indicators (PC-QIs), this study aimed to identify quality indicators that can be used to measure PCC., Methods: Design: scoping review., Data Sources: studies were identified through searching seven electronic databases and the grey literature. Search terms included quality improvement, quality indicators, healthcare quality and PCC. Eligibility Criteria: articles were included if they mentioned development and/or implementation of PC-QIs., Data Extraction and Synthesis: extracted data included study characteristics (country, year of publication and type of study/article), patients' inclusion in the development of indicators and type of patient populations and point of care if applicable (eg, in-patient, out-patient and primary care)., Results: A total 184 full-text peer-reviewed articles were assessed for eligibility for inclusion; of these, 9 articles were included in this review. From the non-peer-reviewed literature, eight documents met the criteria for inclusion in this study. This review revealed the heterogeneity describing and defining the nature of PC-QIs. Most PC-QIs were presented as PCC measures and identified as guidelines, surveys or recommendations, and therefore cannot be classified as actual PC-QIs. Out of 502 ways to measure PCC, only 25 were considered to be actual PC-QIs. None of the identified articles implemented the quality indicators in care settings., Conclusion: The identification of PC-QIs is a key first step in laying the groundwork to develop evidence-based PC-QIs. Research is needed to continue the development and implementation of PC-QIs for healthcare quality improvement., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Globally, health-care systems and organizations are looking to improve health system performance through the implementation of a person-centred care (PCC) model. While numerous conceptual frameworks for PCC exist, a gap remains in practical guidance on PCC implementation., Methods: Based on a narrative review of the PCC literature, a generic conceptual framework was developed in collaboration with a patient partner, which synthesizes evidence, recommendations and best practice from existing frameworks and implementation case studies. The Donabedian model for health-care improvement was used to classify PCC domains into the categories of "Structure," "Process" and "Outcome" for health-care quality improvement., Discussion: The framework emphasizes the structural domain, which relates to the health-care system or context in which care is delivered, providing the foundation for PCC, and influencing the processes and outcomes of care. Structural domains identified include: the creation of a PCC culture across the continuum of care; co-designing educational programs, as well as health promotion and prevention programs with patients; providing a supportive and accommodating environment; and developing and integrating structures to support health information technology and to measure and monitor PCC performance. Process domains describe the importance of cultivating communication and respectful and compassionate care; engaging patients in managing their care; and integration of care. Outcome domains identified include: access to care and Patient-Reported Outcomes., Conclusion: This conceptual framework provides a step-wise roadmap to guide health-care systems and organizations in the provision PCC across various health-care sectors., (© 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Objectives: Explore 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, meaningful patient engagement in ERAS., Design: Qualitative patient-led study using focus groups and narrative interviews. Data were analysed iteratively using a Participatory Grounded Theory approach., Setting: Five tertiary care centres in Alberta, Canada, following the ERAS programme., Participants: Twenty-seven patients who had undergone colorectal surgery in the last 12 months were recruited through purposive sampling. Seven patients participated in a codesign focus group to set and prioritise the research direction. Narrative interviews were conducted with 20 patients., Results: Patients perceived that an ERAS programme should not be limited to the perioperative period, but should encompass the journey from diagnosis to recovery. Practical recommendations to improve the patient experience across the surgical continuum, and enhance patient engagement within ERAS included: (1) fully explain every protocol, and the purpose of the protocol, both before surgery and while in-hospital, so that patients can become knowledgeable partners in their recovery; (2) extend ERAS guidelines to the presurgery phase, so that patients can be ready emotionally, psychologically and physically for surgery; (3) extend ERAS guidelines to the recovery period at home to avoid stressful situations for patients and families; (4) consider activating a programme where experienced patients can provide peer support; (5) one size does not fit all; personalised adaptations within the standardised pathway are required.Drawing upon these data, and through consultation with ERAS Alberta stakeholders, the ERAS team developed a matrix to guide sustained patient involvement and action throughout the surgical care continuum at three levels: individual, unit and ERAS system., Conclusion: This patient-led study generated new insights into the needs of ERAS patients and informed the development of a framework to improve patient experiences and outcomes., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)