In designing engagements, several studies pointed to the importance of clarifying the objectives, roles, and expectations of the engagement for patients/carers [40,41,42,43,44,45]. Approaches that gave users specific roles or engaged them in a formal structure such as a steering committee [45] or that enabled patients to set the agenda, develop shared mission and purpose statements and participate in all/most stages of the planning, administration, and evaluation made participants feel comfortable with the team and process, maintained patient involvement throughout the course of the process, and improved the quality of outcomes [41, 45,46,47,48,49,50]. These techniques occurred in mental health, HIV, and pediatric service settings where patients were engaged to improve access to, and quality of, care or promote a culture change in the development and delivery of services.
Several authors also endorsed flexible approaches for involving patients [45, 49, 53, 54]. For example, Gibson et al. [60] used peer reporter interviews (where patient pairs interviewed each other), headline generation (where phrases were created to capture important issues), group discussion (using a Who, Why, When, What, How structure), a written exercise, and questionnaires for non-attendees to find out what youth would like from their follow-up pediatric oncology services. Other techniques identified in studies were the inclusion of higher proportions of patients compared to providers or staff to give patients a stronger voice in the discussion and process [61] and building in debriefing to provide feedback on how suggestions were acted upon to increase the accuracy of the findings and offer an opportunity for additional input. These techniques proved useful in engaging patients to prioritize stroke service issues and document the process of change of a mental health organization [62, 63]. Others built in regular updates to patient support group to elicit more views, thereby broadening the reach and involvement of patients and providing opportunities to raise and discuss issues of concern in informal settings [48, 54]. One creative technique was a buddy system for users/families to ensure their participation at meetings and throughout implementation/evaluation of a quality improvement project in mental health services [44].
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Engaging patients can also change the culture of staff and care settings. The experiences reported in these articles included shifts in organizational culture promoting further patient participation in service design and delivery, [40, 63, 75] achieving collaboration and mutual learning, [42, 47, 76, 77] and sharing or neutralizing power among patients and providers or staff, [52] as well as developing new competencies and negotiating for service changes [39, 59] (Table 4). Interestingly, these outcomes tended to arise in mental health settings and from co-design engagements (Table 5). Further analysis of the methods used in these studies revealed key enabling factors including creating deliberative spaces to share experiences, including external facilitation; broadening power and control to include users, values, and beliefs exercises; conducting user/staff/provider training; and implementing a top-down approach from the local authority (Table 5).
Mental health settings emerged as a frequent venue for patient engagement in our review. The earliest reports in our review [61, 63, 80] are in this setting, suggesting that the therapeutic approaches, the nature of the population, or the orientation of mental health services might encourage greater patient participation in this area. Indeed, enabling service user involvement in care planning is a key principle of contemporary mental health guidance in the UK [81] and a potentially effective method of improving the culture and responsiveness of mental health services in light of a service history founded on aspects of containment and compulsion, and the stigmatization of those using mental health services [82]. Many of the co-design engagement activities that led to staff and organizational changes such as improved collaboration and mutual learning [42, 47, 76, 77], sharing or neutralizing power among patients and providers or staff [52], developing new competencies, and negotiating for service changes [39, 59] also occurred in mental health. While patient engagement is now occurring in many settings, the experiences in mental health settings serve as important examples of effective patient engagement.
Ultimately, the effectiveness of any patient engagement should be judged by its impact on patient care. There is a growing body of literature that indicates that engaging patients can lead to improved effectiveness, efficiency, quality of care [28,29,30,31], health outcomes, and cost-effective health service utilization [27, 83, 84]. The outcomes reported in our review spanned beyond improved care to include enhanced governance and informed policies and organizational planning, which illustrates the breadth of quality of care initiatives that might be sought through patient engagement. However, drawing causal associations between engaging patients in health services improvement and health outcomes is difficult. Furthermore, it remains unclear whether these improvements translate into sustained or improved quality of care beyond local settings at a system level. Indeed, one study found a lack of evidence that patient involvement leads to the implementation of patient-centered care [85]. Some evaluative tools are emerging [86], yet more studies are needed that assess the conditions on which these tools and strategies can sustain the quality of care systemically.
Our review builds upon previous reviews in this field by providing insight into the associations between quality improvement methods and the varying system-level outcomes they yield. Indeed, our review echoes previous research indicating that patient engagement can lead to a multiplicity of health services outcomes with sufficient role definition, training, and alignment of patient-provider expectations but that the quality of the reporting has been poor and the full impact of patient engagement is not fully understood [87,88,89]. Previous reviews have been limited to specific countries [87], care settings (e.g., mental health [89]), hospitals [90], or study design (e.g., qualitative studies [88]). In this way, our review provides a comprehensive perspective of optimal strategies used internationally, across care settings and using multiple methodologies to engage patients, caregivers, and relatives in quality of care improvement initiatives. Our review also provides novel insights into how the level of engagement influences the outcomes, namely, discrete products (e.g., development of tools and documents) largely derived from low-level engagement (consultative unidirectional feedback), whereas care process or structural outcomes (e.g., improved governance, care or services) mainly derived from high-level engagement (co-design or partnership strategies). If the benefits of engaging patients in the design or delivery of health care are to be realized at an organization or system level, then effective strategies and the contextual factors enabling their outcomes need to be identified so that learning can be generalized. Importantly, our review provides guidance on the effective strategies and contextual factors that enable patient engagement including techniques to enhance the design, recruitment, involvement, and leadership action, and those aimed to create a receptive context.
YB and GRB conceived of the study and participated in its design and coordination. KO and PB retrieved the records. EO, CF, and PB screened the records. EO and CF extracted the data from the eligible articles. YB and GRB developed the initial interpretations of the data and participated in the data analysis. SC conducted the quality appraisal. YB drafted the manuscript. YB and GRB revised the manuscript. J-LD and M-PP were involved in the study design and oversight; they reviewed the initial data analyses and suggested revisions to the versions of the manuscript. All authors read and approved the final manuscript.
Service Design is an eminently practical guide to designing services that work for people. It offers powerful insights, methods, and case studies to help you design, implement, and measure multichannel service experiences with greater impact for customers, businesses, and society.
The healthcare industry is characterized by intensive, never-ending change occurring on a multitude of fronts. Success in such tumultuous environments requires healthcare providers to be proficient in myriad areas, including the manner in which they organize and deliver services. Less efficient designs drain precious resources and hamper efforts to deliver the best care possible to patients, making it imperative that optimal pathways are identified and pursued. One particular avenue that offers great potential for serving patients efficiently and effectively is known as the hub-and-spoke organization design.
Successfully navigating such tumultuous environments requires that healthcare providers be proficient in myriad areas, including the manner in which they organize and deliver services. Less efficient designs drain precious resources and hamper efforts to provide the best care possible to patients, making it imperative that optimal pathways are identified and pursued. One particular avenue that offers great potential for serving patients well is known as the hub-and-spoke organization design [3, 4].
Through strategic centralization of the most advanced medical services at a single site and distribution of basic services via secondary sites, the hub-and-spoke model affords unique opportunities to maximize efficiencies and effectiveness. A well-designed hub-and-spoke network satisfies patient care needs fully, yet does so in a manner that fosters resource conservation, return on investment, service excellence, and enhanced market coverage [4,5,6,7]. Benefits abound, but in order to capitalize fully on the hub-and-spoke organization design, healthcare providers must assemble their service delivery networks with great care and attention. 2ff7e9595c
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