Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems.

INTRODUCTION: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. METHODS: The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design. RESULTS: The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. CONCLUSION: The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. PATIENT CONTRIBUTION: Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.

Recommendations for patient-centered emergency care.

INTRODUCTION: Patient-centred care is more than just an aspiration, it represents a fundamental shift in the way healthcare must be delivered. Patient-centred emergency care is important for improving the patient and clinician experience and is essential for optimizing health outcomes. Creating a patient-centred emergency department emphasizes the importance of the patient's experience, preferences, and values. METHODS: To formulate recommendations for patient-centred care, we synthesized a literature review, stakeholder interviews, consensus from an expert panel of diverse healthcare professionals and a patient advocate, and reviewed our recommendations for feedback with a presentation at the Canadian Association of Emergency Physicians (CAEP) 2023 Annual Conference Academic Symposium. RESULTS: This paper gives practical recommendations for areas and strategies to improve patient-centredness in Emergency Medicine. It delves into the various dimensions of this approach, including the role of the physical environment, communications and interpersonal interactions, systems of care, and measurement, all of which are essential in providing optimal care to match the patients' needs. CONCLUSION: We seek to inspire a renewed commitment of placing the patient at the heart of emergency care, recognizing that patient-centredness is not merely an option but a fundamental aspect of delivering high quality, compassionate and effective healthcare in the emergency setting. In an era marked by technological advancements and evolving healthcare paradigms, the essence of medicine as a deeply human endeavour is becoming in some ways more possible, if we seize the opportunities.

RéSUMé: INTRODUCTION: Les soins axés sur le patient sont plus qu'une simple aspiration, ils représentent un changement fondamental dans la façon dont les soins de santé doivent être dispensés. Les soins d'urgence axés sur les patients sont importants pour améliorer l'expérience des patients et des cliniciens et sont essentiels pour optimiser les résultats pour la santé. La création d'un service d'urgence axé sur le patient souligne l'importance de l'expérience, des préférences et des valeurs du patient. MéTHODES: Afin de formuler des recommandations pour les soins axés sur les patients, nous avons synthétisé une analyse documentaire, des entrevues avec les intervenants, le consensus d'un comité d'experts composé de divers professionnels de la santé et d'un défenseur des patients. et nous avons examiné nos recommandations en matière de rétroaction lors d'une présentation au colloque universitaire annuel 2023 de l'Association canadienne des médecins d'urgence (ACMU). RéSULTATS: Ce document donne des recommandations pratiques sur les domaines et les stratégies pour améliorer l'orientation des patients en médecine d'urgence. Il examine les diverses dimensions de cette approche, y compris le rôle de l'environnement physique, les communications et les interactions interpersonnelles, les systèmes de soins et la mesure, qui sont tous essentiels pour fournir des soins optimaux afin de répondre aux besoins des patients. CONCLUSION: Nous cherchons à inspirer un engagement renouvelé à placer le patient au cœur des soins d'urgence, reconnaissant que l'orientation du patient n'est pas seulement une option, mais un aspect fondamental de la prestation de soins de santé de haute qualité, compatissants et efficaces en milieu d'urgence. À une époque marquée par les progrès technologiques et l'évolution des paradigmes de la santé, l'essence de la médecine en tant qu'entreprise profondément humaine devient à certains égards plus possible, si nous saisissons les opportunités.

Consensus on the definitions and descriptions of the domains of the OMERACT Core Outcome Set for shared decision making interventions in rheumatology trials.

OBJECTIVE: To gain consensus on the definitions and descriptions of the domains of the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials evaluating shared decision making (SDM) interventions. METHODS: Following the OMERACT Handbook methods, our Working Group (WG), comprised of 90 members, including 17 patient research partners (PRPs) and 73 clinicians and researchers, had six virtual meetings in addition to email exchanges to develop draft definitions and descriptions. The WG then conducted an international survey of its members to gain consensus on the definitions and descriptions. Finally, the WG members had virtual meetings and e-mail exchanges to review survey results and finalize names, definitions and descriptions of the domains. RESULTS: WG members contributed to developing the definitions. Fifty-two members representing four continents and 13 countries completed the survey, including 15 PRPs, 33 clinicians and 37 researchers. PRPs and clinicians/researchers agreed with all definitions and descriptions with agreements ranging from 87% to 100%. Respondents suggested wording changes to the names, definitions and descriptions to better reflect the domains. Discussions led to further simplification and clarification to address common questions/concerns about the domains. CONCLUSION: Our WG reached consensus on the definitions and descriptions of the domains of the core domain set for rheumatology trials of SDM interventions. This step is crucial to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set. CLINICAL SIGNIFICANCE: The current study provides consensus-based definitions and descriptions for the domains of the OMERACT core domain set for shared decision making interventions from patients/caregivers, clinicians and researchers. This is a crucial step to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set for trials of SDM interventions.

Endorsement of the OMERACT core domain set for shared decision making interventions in rheumatology trials: Results from a multi-stepped consensus-building approach.

OBJECTIVE: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions. METHODS: The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain set in previous research, we conducted five steps: (i) improving the draft core domain set; (ii) developing and disseminating white-board videos to promote its understanding; (iii) conducting an electronic survey to gather feedback on the draft core domain set; (iv) finalizing the core domain set and developing summaries, a plenary session video and discussion boards to promote its understanding; and (v) conducting virtual workshops with voting to endorse the core domain set. RESULTS: A total of 167 participants from 28 countries answered the survey (62% were patients/caregivers). Most participants rated domains as relevant (81%-95%) and clear (82%-93%). A total of 149 participants (n = 48 patients/caregivers, 101 clinicians/researchers) participated in virtual workshops and voted on the proposed core domain set which received endorsement by 95%. Endorsed domains are: 1- Knowledge of options, their potential benefits and harms; 2- Chosen option aligned with each patient's values and preferences; 3- Confidence in the chosen option; 4- Satisfaction with the decision-making process; 5- Adherence to the chosen option and 6- Potential negative consequences of the SDM intervention. CONCLUSION: We achieved consensus among an international group of stakeholders on the OMERACT core domain set for rheumatology trials of SDM interventions. Future research will develop the Core Outcome Measurement Set. CLINICAL SIGNIFICANCE: Prior to this study, there had been no consensus on the OMERACT core domain set for SDM interventions. The current study shows that the OMERACT core domain set achieved a high level of endorsement by key stakeholders, including patients/caregivers, clinicians and researchers.

Improving benefit-harm assessment of glucocorticoid therapy incorporating the patient perspective: The OMERACT glucocorticoid core domain set.

OBJECTIVE: Our primary objective was to develop an Outcome Measures in Rheumatology (OMERACT) core domain set to capture the impact of glucocorticoids (GC), both positive and negative, on patients with Rheumatic conditions. METHODS: The OMERACT Filter 2.1 was used to guide core domain selection. Systematic literature reviews, qualitative studies and quantitative surveys were conducted by the OMERACT GC Impact working group to identify candidate domains for a core domain set. A summary of prior work and Delphi exercise were presented at the OMERACT 2020 virtual GC workshop. A proposed GC Impact core domain set derived from this work was presented for discussion in facilitated breakout groups. Participants voted on the proposed GC Impact core domain set. RESULTS: 113 people, including 23 patient research partners, participated in two virtual workshops conducted at different times on the same day. The proposed mandatory domains to be evaluated in clinical trials involving GCs were: infection, bone fragility, hypertension, diabetes, weight, fatigue, mood disturbance and death. In addition, collection of disease specific outcomes was included in the core domain set as "mandatory in specific circumstances". The proposed core domain set was endorsed by 100% (23/23) of the patient research partners and 92% (83/90) of the remaining participants, including clinicians, researchers and industry stakeholders. CONCLUSION: A GC Impact core domain set was endorsed at the OMERACT 2020 virtual workshop. The OMERACT GC Impact working group will now progress to identify, develop and validate measurement tools to best address these domains in clinical trials.

OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions.

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials. METHODS: A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements. RESULTS: OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains. CONCLUSION: A revised core domain set will undergo further consensus-building.

Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT).

There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients' and researchers' perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.

Toward the Development of a Core Set of Outcome Domains to Assess Shared Decision-making Interventions in Rheumatology: Results from an OMERACT Delphi Survey and Consensus Meeting.

OBJECTIVE: The aim of this Outcome Measures in Rheumatology (OMERACT) Working Group was to determine the core set of outcome domains and subdomains for measuring the effectiveness of shared decision-making (SDM) interventions in rheumatology clinical trials. METHODS: Following the OMERACT Filter 2.0, and based on a previous literature review of SDM outcome domains and a nominal group process at OMERACT 2014, (1) an online Delphi survey was conducted to gather feedback on the draft core set and refine its domains and subdomains, and (2) a workshop was held at the OMERACT 2016 meeting to gain consensus on the draft core set. RESULTS: A total of 170 participants completed Round 1 of the Delphi survey, and 116 completed Round 2. Respondents came from 29 countries, with 49% being patients/caregivers. Results showed that 14 out of the 17 subdomains within the 7 domains exceeded the 70% criterion (endorsement ranged from 83% to 100% of respondents). At OMERACT 2016, only 8% of the 96 attendees were patients/caregivers. Despite initial votes of support in breakout groups, there was insufficient comfort about the conceptualization of these 7 domains and 17 subdomains for these to be endorsed at OMERACT 2016 (endorsement ranged from 17% to 68% of participants). CONCLUSION: Differences between the Delphi survey and consensus meeting may be explained by the manner in which the outcomes were presented, variations in participant characteristics, and the context of voting. Further efforts are needed to address the limited understanding of SDM and its outcomes among OMERACT participants.

Development of a Draft Core Set of Domains for Measuring Shared Decision Making in Osteoarthritis: An OMERACT Working Group on Shared Decision Making.

OBJECTIVE: Despite the importance of shared decision making for delivering patient-centered care in rheumatology, there is no consensus on how to measure its process and outcomes. The aim of this Outcome Measures in Rheumatology (OMERACT) working group is to determine the core set of domains for measuring shared decision making in intervention studies in adults with osteoarthritis (OA), from the perspectives of patients, health professionals, and researchers. METHODS: We followed the OMERACT Filter 2.0 method to develop a draft core domain set by (1) forming an OMERACT working group; (2) conducting a review of domains of shared decision making; and (3) obtaining opinions of all those involved using a modified nominal group process held at a session activity at the OMERACT 12 meeting. RESULTS: In all, 26 people from Europe, North America, and Australia, including 5 patient research partners, participated in the session activity. Participants identified the following domains for measuring shared decision making to be included as part of the draft core set: (1) identifying the decision, (2) exchanging information, (3) clarifying views, (4) deliberating, (5) making the decision, (6) putting the decision into practice, and (7) assessing the effect of the decision. Contextual factors were also suggested. CONCLUSION: We proposed a draft core set of shared decision-making domains for OA intervention research studies. Next steps include a workshop at OMERACT 13 to reach consensus on these proposed domains in the wider OMERACT group, as well as to detail subdomains and assess instruments to develop a core outcome measurement set.