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A Systematic Review of Interventions for Improving the Work Performance of Direct Support Staff

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  • Open Access
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Engaging patients to improve quality of care: a systematic review

  • G. Ross Bakeri,
  • Elaina Orlandoane,3,
  • Carol Fancottane,
  • Pooja Bhatia1,
  • Selina Casalino2,
  • Kanecy Onate1,
  • Jean-Louis Denis4 &
  • Marie-Pascale Pomey5

Implementation Science volume xiii, Article number:98 (2018) Cite this article

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Abstract

Groundwork

To identify the strategies and contextual factors that enable optimal appointment of patients in the design, commitment, and evaluation of health services.

Methods

Nosotros searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Scientific discipline Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the blueprint, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (three) patients' experiences of being engaged.

Results

Forty-eight studies were included. Strategies and contextual factors that enable patient date were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced intendance processes or service commitment and governance (care procedure or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—detached products largely derived from depression-level date (consultative unidirectional feedback)—whereas care procedure or structural outcomes mainly derived from loftier-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients' experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater interest and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been fabricated.

Conclusions

Patient engagement can inform patient and provider didactics and policies, as well every bit enhance service delivery and governance. Additional evidence is needed to sympathise patients' experiences of the engagement procedure and whether these outcomes translate into improved quality of intendance.

Registration

N/A (data extraction completed prior to registration on PROSPERO).

Peer Review reports

Groundwork

Patient engagement has become a cornerstone of quality of care [ane,two,3,4,5,6] and is a frequently stated goal for healthcare organizations. Traditionally, and nigh unremarkably, this engagement has focused on the human relationship between patients and providers in making care decisions or how to better patient efforts to manage their ain care [7]. However, there are growing efforts to integrate patients in broader means, including efforts to better or redesign service commitment past incorporating patient experiences [8,9,10,11,12]. These efforts are due in part to an increased recognition and acceptance that users of health services have a rightful function, the requisite expertise, and an important contribution in the design and delivery of services [4]. While the nature of patient date may vary from including patients as members of a board to time-express consultation with patients on service redesign, its aims are consistent—to better the quality of care [11, 13, xiv].

Healthcare organizations have a long tradition of measuring the experience of patients, and health service "users" including families, caregivers, and clients, with their services. Yet, traditional satisfaction surveys oft prove difficult to translate into improved service delivery [15, xvi]. Indeed, inquiry on patient engagement has pointed to the importance of augmenting traditional surveys and complaint processes, moving towards fuller appointment of patients in reviewing and improving the quality of service commitment in institutions and in the community [17,18,xix,twenty,21,22,23,24,25]. This recognition has been accompanied by a growth in the development of instruments to measure and better the quality of care patients receive. Over the past two decades, assessments of quality of intendance from the patient perspective have shifted from patient satisfaction to patient experiences [26]. Increasing literature indicates that it is non only feasible to involve patients in the delivery or re-design of health intendance [9] merely that such date can lead to reduced hospital admissions [27], improved effectiveness, efficiency and quality of wellness services [28,29,30,31], improved quality of life, and enhanced quality and accountability of health services [nine]. Frameworks of patient interest take been developed that move from the traditional view of the patient as a passive recipient of a service to an integral fellow member of teams re-designing wellness care [8, 11]. For instance, one framework developed past Bate and Robert (2006) describes a continuum of patient involvement, which ranges from complaints, giving information, listening, and consulting towards experience-based co-design of services [8]. Low-level engagement, such equally consulting, comprises largely unidirectional feedback (east.thousand., focus groups, surveys, interviews), whereas high-level appointment, like co-design, represents a partnership in the design or evaluation of services. A more recent framework developed past Carman et al. describes various levels of engaging patients and families in health and wellness care, from consultation or involvement to partnership and shared leadership in diverse activities including direct care, organizational blueprint, and governance to policy-making [eleven]. Carman's continuum of engagement was influenced by Arnstein's determinative "ladder of citizen participation," a continuum of public participation in governance ranging from express participation to a state of collaborative partnership in which citizens share leadership or control decisions [32].

Governments and wellness care institutions are urged by some experts to engage patients and other service users, including caregivers and relatives in more robust ways [8, 33] where patients are actively involved as partners or co-leads in organizational re-design and evaluation of wellness care delivery, as depicted by the red section in Carman's framework (Fig. i). Despite the substantive torso of research on strategies to engage patients and their furnishings on patients and health services, the literature is dispersed and has not been recently synthesized into a coherent overview. If the benefits of engaging patients in the design or delivery of wellness care are to exist realized at an organization or system level, then constructive strategies and the contextual factors enabling their outcomes demand to be identified so that learning tin be generalized. We conducted a systematic review of international English linguistic communication literature on strategies for actively engaging patients and families in improving or redesigning health care and the contextual factors influencing the outcomes of these efforts. The explicit questions that guided our review were:

  1. 1.

    What are the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services?

  2. 2.

    What are the outcomes of patient appointment on services?

  3. iii.

    What are patients' experiences of being engaged?

Fig. one
figure 1

Patient appointment frameworks used for the pick and analyses of studies included in our review. The red box indicates the level of engagement along the continuum that is the focus of our studies included in our review [11]. The organizing framework used for analyzing the studies reviewed [viii]

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Methods

Arroyo

We took a comprehensive approach in our systematic search and included all empirical qualitative, quantitative, and mixed methods study designs across all settings of care to address our narrow research questions. Our review did not fit into typologies of literature reviews [34, 35], given that we included qualitative and quantitative studies (to capture the latitude of studies in this area), employed a thematic analysis (given the multiplicity of designs), and applied a quality appraisal. We followed the PRISMA reporting criteria for Systematic Reviews and Meta-Analyses (Fig. 2) [36].

Fig. ii
figure 2

Flow diagram for search and pick process. From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Grouping (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med six (6): e1000097. https://doi.org/10.1371/periodical.pmed1000097

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Search strategy

In accordance with the core principles of systematic review methodology [37], nosotros conducted a systematic review of relevant literature with the help of a librarian using the electronic databases of: MEDLINE, EMBASE, CINAHL, the Cochrane Library, Scopus, PsychINFO, Social Science Abstracts, AbiInform Business Source Premier (EBSCO), and ISI Web of Science. We searched the databases using the following subject headings related to patient date—combinations of "patient", "user", "client", "caregiver", "family" and "appoint*", "participat*", "involve*", "consult*"; for those related to designing, evaluating and delivery of services—combinations of "design", "deliver*", "evaluat*", "outcome", "develop*", "plan*" and "wellness services", "health care", "health", "service". Nosotros included a combination of search terms from each category for each search, for case, "patient" AND "engage*" AND "blueprint" AND "wellness services").

Criteria for option

Studies were eligible for inclusion if they were available empirical manufactures that explicitly investigated the participation of patients, caregivers, or families in the design, delivery, and evaluation of health services, which aligns with involving or partnering/sharing leadership with patients in organizational design and governance, reflecting Carman'due south framework (Fig. 1) [11]. Searches were restricted to qualitative, quantitative, or mixed methods articles published in English betwixt January 1990 and March 2016. We chose 1990 as this coincided with the emergence of patient engagement particularly in mental health services and the broader quality of care discourse. All settings of care were eligible. We excluded articles that did not explicitly address patient date, likewise as those that did not pertain to the broader design, delivery, and evaluation of wellness services (east.k., directly engaging patients in patient safety activities such equally challenging staff who care for them to wash their easily or monitor the use of a rubber checklist in their care, or in their self-management or handling decisions, or studies pertaining to patient interest in wellness research, community evolution, or wellness promotion). We also excluded articles that did non describe the effect of the appointment of patients and those in which the outcomes did nor pertain to the design, delivery, or evaluation of health services (e.thousand., those that related to developing questionnaires or conceptual frameworks, insights on how to engage patients or work collaboratively). Nosotros focused on studies that consulted, involved, partnered, or co-designed wellness services with patients, informed past Bate and Robert's [8] and Carman et al.'s [11] frameworks on patient engagement (Fig. ane). Finally, theoretical or conceptual articles also as those focused on guideline evolution, musical instrument evolution, or broader organizational issues were excluded.

Titles and abstracts of the papers were examined to decide if the full commodity should be retrieved (Fig. 2). EO and CF were the principal reviewers who examined the titles and abstracts, applied inclusion criteria to the articles, and abstracted the information using an abstraction form. Any disagreement and uncertainties regarding inclusion were discussed and agreed upon by an additional reviewer (YB) on the brainchild form. We conducted calibration exercises to ensure reliability in applying the selection criteria. Reviewers independently screened the titles and abstracts, and discrepancies were discussed and reviewed by the third reviewer. At that place was a 95.46% observed agreement and 85.75% expected agreement between main reviewers, with a kappa statistic of 0.703 (standard error, 0.021; 95% confidence interval, 0.662–0.744), which is relatively loftier compared to other noesis synthesis protocols reporting fifty% consistency rates [34].

Data abstraction and synthesis

Data brainchild forms were used to describe the studies' population, location (i.e., country), goals, methodology, and outcomes (Table i); contextual factors influencing appointment (i.e., leadership and specific barriers and facilitators to patient date) (Tabular array 2); and patients' experience with the date and evaluation of study quality (Tables 2 and three). Studies were and then categorized by the level of patient appointment using Bate and Robert'southward (2006) continuum of patient involvement [8]. Consequent with our aims to review strategies for actively engaging patients and families in improving or redesigning health care, we focused on studies using co-pattern or those consulting patients but also using elements of co-blueprint—i.eastward., the more agile levels of engagement on the Bates and Robert continuum. We classified changes or products of engaging patients as "quality of intendance outcomes" and the impact of the engagement on patients every bit "patients experience outcomes" (Table ane). Quality of care outcomes were categorized into one of the following: developing didactics or a service-related tool, informing policy or planning documents, and enhancing services or governance. Written report quality was assessed by one person and two verifiers using a quality appraisal tool that systematically reviews disparate forms of evidence and methodologies on a calibration from "very poor," "poor," "fair," and "proficient" [38], which reflected the mixed methods articles in our review. Verification involved systematically checking and confirming the fit between each criterion of the assessment tool and the conceptual work of analysis and interpretation of report quality among a subset of studies. Nosotros as well assessed the possible impact of study quality on the review's findings (alike to a "sensitivity assay" conducted for meta-analyses).

Table 1 Overview of patient engagement studies to improve quality of intendance

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Tabular array 2 Summary of facilitators and barriers of patient engagement

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Table iii Quality of intendance outcomes and levels of appointment

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Information analysis

Information were analyzed to address the three research questions, with the intention of (1) identifying strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services; (2) identifying the outcomes of patient date; and (3) exploring patients' experiences of being engaged. YB analyzed the data using quantitative (i.e., frequency analysis) and qualitative methods. YB used thematic analysis to identify the strategies and contextual factors (i.e., barriers and facilitators), outcomes, and experiences of optimal patient appointment. This process involved identifying prominent or recurring themes in the literature (relevant to our inquiry questions) and summarizing the findings of different studies under thematic headings using summary tables. A coding framework was developed to thematically describe the strategies and contextual factors enabling patient engagement. YB and RB refined the framework as new information emerged during the assay.

Results

Included studies

We institute a total of 20,957 studies about involving patients in the design, delivery, or evaluation of wellness intendance. Of these, we excluded 20,909 considering they did non report outcomes related to health intendance delivery, blueprint, or evaluation (north = 67) or only informed/consulted with patients, as opposed to engage them in co-blueprint (due north = 91) (Fig. 2; Additional file 1: Tabular array S3 & Boosted file two: Figure S1). Our final sample of studies included 48 papers involving patients, families, and caregivers along with service users, health intendance providers, staff, board members, health care managers, administrators, and determination-makers (Table 1). The publication date of the included studies spanned from 1993 to 2016, and interestingly, co-blueprint was employed as early as 1993 to as recently every bit 2015 in published studies. Of the 48 included studies, 27 were qualitative studies; three were quantitative; 13 constituted mixed methods studies, which included qualitative, quantitative methods; and 5 comprised user panels or advisory meetings (Tabular array iv). We restricted our assay to manufactures actively engaging patients. One-half of the articles (due north = 24) included consultative activities typical of depression-level engagement (i.e., where patients provided input on enquiry design or measures as role of the research or administrative squad). The other one-half were co-design (loftier-level engagement—i.e., deliberative, reflexive processes where patients and providers work together to create solutions [39]) (Table four). Date efforts spanned a range of services, including pediatrics, customs and principal care, and most frequently occurred in mental wellness services (n = 17; 35%—Tables iv and one). Studies originated from various countries, with most deriving from the UK (northward = 26; 54%) (Tables 4 and 1). Few studies formally evaluated patients' experiences of the process of being engaged (n = 12; 25%) (Additional file 3: Table S1).

Table 4 Characteristics of patient appointment studies

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Strategies for optimal patient engagement to improve quality of care

We identified various strategies that contributed to optimal patient date, which were mediated past key contextual factors that enabled or constrained the effectiveness of the engagement. These strategies were thematically grouped every bit techniques to enhance (1) blueprint, (two) recruitment, (three) involvement, (iv) creating a receptive context, and (5) leadership actions. Here, nosotros describe the strategies and contextual factors that enabled optimal patient date (see also Additional file 3: Table S1).

Techniques to enhance pattern of date

In designing engagements, several studies pointed to the importance of clarifying the objectives, roles, and expectations of the appointment for patients/carers [40,41,42,43,44,45]. Approaches that gave users specific roles or engaged them in a formal construction such every bit a steering committee [45] or that enabled patients to set the calendar, develop shared mission and purpose statements and participate in all/most stages of the planning, administration, and evaluation fabricated participants feel comfortable with the team and process, maintained patient involvement throughout the course of the procedure, and improved the quality of outcomes [41, 45,46,47,48,49,fifty]. These techniques occurred in mental wellness, HIV, and pediatric service settings where patients were engaged to better access to, and quality of, care or promote a culture change in the development and delivery of services.

An important strategy used in pediatric, diabetes, and home care settings was holding training sessions to set up staff and patients, which provided clarity on roles and responsibilities, helped patients or carers sympathize how they could best contribute, sensitized participants to the contextual and cultural issues, and increased patients' confidence and commitment to the engagement process [41, 51, 52]. Grooming also offered the do good of building positive relationships between users, facilitators, and staff [43, 45, 49, 53, 54], which besides served to mediate a primal barrier identified: providers' skepticism towards engaging patients and devolving power to them [42, 55]. Therefore, these techniques helped to create a level playing field and support staff in their efforts to exist partners.

Techniques to heighten representation

With respect to sampling and recruitment, several studies stressed the importance of ensuring diversity and representation consistent with the broader population across different professional person backgrounds and skills [43, 45, 54]. These studies endorsed recruiting patients through providers, [42] existing patients [56], and those with broader networks or previous working relationships with staff [45, 54, 57, 58]. These techniques proved useful in engaging patients in the context of HIV/AIDS prevention, interventions to reduce repetition of self-impairment and substance employ, and identifying barriers to mental wellness services [42, 56,57,58]. One caveat with this arroyo is that it needs to be weighed against the potential for introducing biases or including cocky-selected participants. Offering stipends, financial compensation (e.yard., kid care, transportation), or other incentives encouraged participation [42, 45, l, 54, 55, 58, 59]. One study in the HIV setting used artistic techniques to incentivize participation across monetary incentives, such as counseling, access to medical care, and granting diplomas [58].

Techniques to raise involvement

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 notice 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 requite patients a stronger vocalisation in the word 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 than 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].

Techniques to create a receptive context

Several studies beyond general medicine, diabetes, mental health, and emergency services highlighted the importance of creating a receptive context by giving each of the stakeholder groups equal say, using techniques such equally deliberation and democratic dialog, [39, 51] values and behavior exercise [48], and narratives to facilitate shared understandings, generate consensus, or find common footing [54, 64]. These techniques created a level playing field and supported staff in their efforts to be partners. Other studies focused on the empowerment and autonomy of users through "active citizenship" in an "egalitarian spirit" [50, 65] which was found to foster a culture of respect [54]. Ensuring that users had an equal voice throughout all aspects of building the intervention was found to assistance equalize the power differential that oft arises in professionally delivered services [65]. Finally, location influenced participation—some studies held consultation outside of the hospital setting such equally a disco to appeal to youth [66]. Others conducted meetings in participants' homes [58] and childcare community sites [67].

External facilitation [39, 63] catalyzed receptive contexts that encouraged user involvement by creating a positive working environment with mutual respect and equal partnership [53]. Finally, attention was also paid to the physical environment (due east.g., cleanliness, chair arrangement [53]) and employ of physical props, and visual mapping, which supported participants' word and interactions besides as demonstrated to service users the importance of their contribution [68].

Leadership actions

A key facilitator of successful engagement was actions and interest by organizational leaders. This occurred in a variety of means including acme-downward approaches and at community levels where local champions led initiatives or were actively engaged to ensure their success. Pinnacle-downwards approaches included institutional- or executive-level commitment and sponsorship, which was readily apparent across mental health, HIV, and pediatric care settings [41, 44,45,46, 50, 63]. Having managers and executives recognize and advocate for the importance of patient involvement fostered a sense of empowerment and commitment among patients and ensured organizational sustainability of the engagement. This was a goal of two mental wellness studies, where the senior level of a local dominance took a "tiptop-downwardly" approach to promote user involvement, which resulted in a reported civilisation change throughout the authority [40, 63]. This was highlighted in one report's "ideological and policy commitment to meaningful interest of people affected with HIV" as demonstrated past ongoing contact with management and executives and a head clinician open up to changes that would disturb traditional relationships and power disparities between service users and providers [l]. Leadership action was also shown to help marshal the engagement findings or recommendations and ensure that they are advanced within the system'southward relevant strategic plans and policies in main care [69]. Timing is too an important factor—ensuring that the engagement occurs prior to decision-making, rather than providing input on proposals to which services are already committed was stressed in a number of studies [45]. Otherwise, the engagement could run the risk of being perceived as tokenistic by the users.

Outcomes of engaging patients to better quality of care

Discrete outcomes of improved quality of care

Nigh studies noted more one type of issue on the quality of care, including enhanced care or service delivery (n = 35), evolution of specific policy or planning documents (n = 15), and enhanced governance and education or tool development (northward = 5 and 11, respectively). Examples of educational materials, tools, policy, and planning documents included evaluation tools [49], electronic personal health records for mental health users [70], a new tool for discharge [71], creation of models of care [72], and organization priorities and processes [49]. Examples of care process, service delivery, and governance included the creation of a prevention of delirium program [73], family integrated program in NICU [45], and care pathway for cellulitis that reduced admissions to hospital [48]. Other engagements in this category led to consummate organizational redesign of an outpatient HIV clinic in Southern Kingdom of norway [fifty], reconceptualized service for outpatients [68], and revisions to the delineation of roles and responsibilities between an Ancient customs-controlled health service and local Australian wellness service [74].

We conceptualized the evolution of educational materials, tools, policy, and planning documents equally "discrete products," whereas enhanced care procedure, service commitment, and governance constituted "care process or structural outcomes." Interestingly, discrete products were more likely to derive from studies using lower levels of engagement (i.e., mostly consultative with elements of co-design), while care process or structural outcomes were more likely to result from higher levels of engagement (i.e., co-pattern) (Table three).

Impact of engaging patients on the institution

Engaging patients can also change the civilization of staff and care settings. The experiences reported in these articles included shifts in organizational culture promoting farther patient participation in service design and commitment, [40, 63, 75] achieving collaboration and mutual learning, [42, 47, 76, 77] and sharing or neutralizing power amidst patients and providers or staff, [52] as well as developing new competencies and negotiating for service changes [39, 59] (Table four). Interestingly, these outcomes tended to ascend in mental wellness settings and from co-design engagements (Table v). Further assay of the methods used in these studies revealed central enabling factors including creating deliberative spaces to share experiences, including external facilitation; broadening power and command to include users, values, and beliefs exercises; conducting user/staff/provider training; and implementing a tiptop-down approach from the local authority (Table 5).

Table 5 Examples of studies reporting the touch of engaging patients in institutions

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Patients' experiences of being engaged to meliorate quality of care

Xx-three of the 48 studies provided information on the patients' experiences of their engagement, though only 12 studies formally evaluated patients' experiences in the procedure of being engaged to improve quality of care. Of those that evaluated experiences, x studies reported positive views, while in ii studies, patients reported negative experiences and ii studies reported both positive and negative experiences (Boosted file iii: Table S1). Of the positive experiences, patients and carers expressed satisfaction with the engagement processes [43, 78] were interested in continuing their interest in the longer term, [75] felt the feel to exist educational, [52] and felt that participation highlighted issues that would accept otherwise been ignored [39, 64, 75]. Positive experiences were linked to feeling empowered and independent as a issue of skills evolution and positive recognition [58, 59, 63]. Some patients reported increased self-esteem from contributing [41, 58, 66] and improved cocky-efficacy and cocky-sufficiency [76] and that the experience encouraged peer educators to pursue formal training [55]. In another written report, staff reported learning about user participation [46].

Patient feedback in other appointment studies was not equally positive. Some studies found that patients were satisfied but felt the engagement demanded considerable free energy and time [66]. Others felt that their involvement was tokenistic because decisions had been made in accelerate or was used to justify decisions that had already been fabricated [47, 61]. Some participants felt that their requests were denied or that managerial support was lacking [47], while others were dissatisfied with their lack of interest in analyzing the findings and creating the final report [46].

Quality appraisal

The boilerplate quality of the studies was "fair," based on a quality appraisal tool that systematically reviews disparate forms of evidence and methodologies on a calibration from "very poor," "poor," "fair," and "expert" [38] (Additional file 4: Table S2). We also assessed the possible touch on of study quality on the review'due south findings (akin to a "sensitivity analysis" conducted for meta-analyses). There were only 6 (of 48) "poor" quality studies. Removing the six poor quality studies reduced the number/range of examples provided for our findings on the strategies/contextual factors that contributed to optimal patient date (inquiry question 1), their outcomes on services (research question two), and patients' feel of existence engaged (enquiry question three), only deletion of these studies from the analysis did not alter the substance of the findings.

Discussion

This report provides a comprehensive review of the strategies used to engage patients in service planning, design, and evaluation. It too identifies the outcomes and contextual factors shaping optimal patient appointment to improve quality of intendance. Strategies and contextual factors that enabled patient engagement included techniques to enhance design, recruitment, involvement, and leadership activity, and those aimed at creating a receptive context. Reported outcomes ranged from developing education or tools for patients and providers and informing policy or planning documents (discrete products) to enhanced care, service commitment, and governance (intendance procedure or structural outcomes). Interestingly, the level of engagement appears to influence the outcomes of service redesign: discrete products largely derived from low-level (consultative) appointment, whereas care process or structural outcomes mainly derived from high-level (co-design) engagement. Surprisingly, only a minority of studies (n = 12; 25%) formally evaluated patients' experiences of the appointment activities. While most experiences were positive, some patients sought greater involvement and felt that their involvement was important simply tokenistic, especially when requests were denied or when the engagement was used to justify decisions that had already been made. However, it remains unclear how these initiatives affect patients and whether these improvements translate into improved quality of care at a system level.

At that place were several limitations to this review. Despite the large number of initial search results, there was but a small number of studies focused on involving patients in co-designing health service improvement. Therefore, despite our best attempts, the specificity of our search criteria was small, a problem familiar to systematic reviews in wellness services enquiry, which typically crosses many disciplinary boundaries [38]. Future searches would do good from improved keywords or MeSH terms on the topic of patient appointment. In addition, studies characterized wellness service users and their involvement differently, ranging from user-centeredness, patient-centered care, and user involvement to patient interest or participation. Indeed, "user" was a common term used in the United kingdom, whereas other terms such as "patient" and "caregiver" are commonly used in the USA and Canada. These different conceptualizations might signify important distinctions, and the apply of different terms, and the publication of these papers beyond many different journals, raises challenges in identifying and analyzing this literature. We addressed this limitation by using multiple terms and search strategies across multiple disciplinary databases that incorporated terms used in like reviews. We deliberately sought out the terminology used in key articles to aggrandize our search though may not have captured the unabridged breadth of terms, such equally "consumer," a popular term used in Australian wellness services research. We repeat previous work that identified this "conceptual muddle" as "i of the greatest barriers to truly integrating patient involvement into health services, policy, and research" [79].

In that location was also significant variation in sample sizes and populations included in these engagement studies. Samples sizes ranged from 3 to 372 participants and included a multifariousness of patients, families, caregivers, service users, health care providers, staff, board members, health intendance managers, administrators, and decision-makers. Many studies did not provide details on their sample. These variations illuminate the absence of a standard approach for designing and reporting engagement initiatives. This variation may also reflect the variety of journals in which this enquiry is reported. Additional limitations include the diverseness of methods used and the express evaluation of the engagement methods themselves. Where there was no explicit evaluation of appointment, other information including authors' discussion of strengths and limitations was used to assess the effectiveness of engagement. However, this does not specifically comprise evaluation of the engagement process or its outcomes on intendance. Development of evaluative metrics and frameworks for the procedural and noun outcomes of engagements appears warranted. A concluding important limitation is that our search ended in 2016, and therefore, these insights may differ in the futurity given the speedily growing field of patient engagement. This is a limitation familiar to systematic reviews just a futurity review may be warranted.

Despite these limitations, our report revealed key insights into the factors that influence the ability of health care organizations and determination-makers to create opportunities for engagement that are not provided in private studies, which cantankerous disciplines and geographical boundaries. We institute that successful patient engagement resulted in culture alter within the organization, meaningful collaboration and mutual learning, and shared or neutralized power, which tended to arise in settings where co-pattern is used. Optimal engagement ofttimes includes some of the following strategies: use of deliberative spaces to share experiences, external facilitation, broadening power and control to include users in all aspects of the process, flexible approaches for involving users, user training, clarity of roles and objectives, providing feedback, leadership by local champions and securing institutional and/or executive level commitment, and sponsorship from local authority by manner of dedicated resources and on-going contact with management and executives. Leadership is key, but there may exist a potential temporal trend in leadership actions; elevation-down approaches to patient appointment tended to exist reported in earlier studies [xl, 63] whereas more clinician or customs-driven initiatives emerged from more contempo studies [42, 77]. Another important factor is the timing of appointment. If the engagement occurred later a decision had been fabricated, the success (or fifty-fifty function) of the engagement became highly questionable from the patient's perspective. Taken together, this analysis suggests that co-design methods supported by executive sponsorship or driven by local champions that apply externally facilitated, deliberative, experience-based soapbox with trained users tin promote successful patient date and outcomes.

Mental health settings emerged as a frequent venue for patient appointment 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 surface area. Indeed, enabling service user involvement in intendance planning is a cardinal principle of contemporary mental health guidance in the Britain [81] and a potentially effective method of improving the civilisation 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 wellness services [82]. Many of the co-design engagement activities that led to staff and organizational changes such every bit improved collaboration and mutual learning [42, 47, 76, 77], sharing or neutralizing power amidst patients and providers or staff [52], developing new competencies, and negotiating for service changes [39, 59] also occurred in mental health. While patient date is now occurring in many settings, the experiences in mental health settings serve as of import examples of effective patient appointment.

Ultimately, the effectiveness of whatsoever patient date should be judged by its touch on on patient intendance. 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 intendance initiatives that might be sought through patient appointment. However, drawing causal associations betwixt engaging patients in health services comeback and wellness outcomes is difficult. Furthermore, it remains unclear whether these improvements translate into sustained or improved quality of care across local settings at a system level. Indeed, one study institute 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 intendance systemically.

Our review builds upon previous reviews in this field by providing insight into the associations between quality improvement methods and the varying organisation-level outcomes they yield. Indeed, our review echoes previous inquiry indicating that patient engagement can pb to a multiplicity of health services outcomes with sufficient part definition, training, and alignment of patient-provider expectations but that the quality of the reporting has been poor and the total impact of patient engagement is not fully understood [87,88,89]. Previous reviews accept been express to specific countries [87], care settings (e.g., mental health [89]), hospitals [90], or written report pattern (e.k., qualitative studies [88]). In this mode, 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 appointment influences the outcomes, namely, discrete products (e.g., evolution of tools and documents) largely derived from low-level engagement (consultative unidirectional feedback), whereas care process or structural outcomes (e.1000., 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 wellness care are to be realized at an organization or system level, and then constructive strategies and the contextual factors enabling their outcomes demand to be identified so that learning can be generalized. Importantly, our review provides guidance on the effective strategies and contextual factors that enable patient date including techniques to enhance the design, recruitment, interest, and leadership action, and those aimed to create a receptive context.

Future research would benefit from greater consistency in the conceptual, methodological, and evaluative frameworks employed. Greater emphasis is as well needed on a procedural evaluation that assesses grouping limerick, group cohesion or collaboration, equality of the participation, and the level of deliberation/reasoning. Such assessments are beingness developed in the deliberative republic field [91] and could be informative in patient engagement initiatives. The limited evaluation of patients' experiences is particularly ironic given the intent of these services to be patient-centered. Additional evaluative metrics should be developed to examine patients' experiences. Finally, since it is difficult to draw causal relationships between patient engagement and health outcomes, future research should contain longitudinal measures and approaches to explore the impact of patient co-design on quality of care.

Several exercise implications also emerge and reflect factors linked to the success of quality improvement initiatives more more often than not. Senior leadership back up is disquisitional to success since information technology increases the likelihood that the relevant decision-makers will implement the findings, and dedicated resources may encourage staff commitment to these efforts.

Conclusions

Despite the substantive trunk of research on strategies to engage patients and their effects on patients and health services, the literature is varied and dispersed. This study provides a comprehensive review of the strategies used to engage patients in service planning and design, identifies the outcomes, and contextual factors shaping optimal patient engagement to better quality of care. Patient engagement can inform education, tools, planning, and policy (detached products) as well as enhance service delivery and governance (intendance process or structural outcomes). The level of date appears to influence the outcomes of service redesign; discrete products are largely derived from depression-level (consultative to co-design) engagement, whereas care process or structural outcomes mainly derived from high-level (co-design) engagement. Further bear witness is needed to empathise patients' experiences of the engagement process and whether these outcomes translate into improved quality of care.

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Acknowledgements

Nosotros thank the Canadian Foundation for Healthcare Comeback for the funding for this study. Yvonne Bombard was funded by a Postdoctoral Fellowship and a New Investigator Laurels from the Canadian Institutes of Health Research (CIHR) and CIHR Strategic Training Fellowships of "Public Health Policy" and "Wellness Care, Technology and Place" during the behave of this research. Jean-Louis Denis holds a Canada Enquiry Chair on governance and transformation of wellness systems and organizations. We give thanks Drs. Sharon Strauss, Andrea Tricco, and Monika Kastner for the communication on systematic review methodology.

None of these funding agencies played any role in the study design; in the drove, analysis, and interpretation of information; in the writing of the report; and in the decision to submit the commodity for publication.

Funding

The Canadian Foundation for Healthcare Improvement provided funding for this study merely were non involved in the conception or conduct of the systematic review.

Availability of data and materials

The dataset(due south) supporting the conclusions of this article is(are) included within the article (and its additional file(south)).

Author information

Affiliations

  1. Institute of Health Policy, Management and Evaluation, University of Toronto, 155 Higher Street quaternary Flooring, Toronto, Ontario, M5T 3M6, Canada

    Yvonne Bombard, G. Ross Baker, Elaina Orlando, Carol Fancott, Pooja Bhatia & Kanecy Onate

  2. Li Ka Shing Noesis Institute, St. Michael's Hospital, xxx Bond St, Toronto, Ontario, M5B 1W8, Canada

    Yvonne Bombard & Selina Casalino

  3. Niagara Health System, 1200 Quaternary Avenue, St. Catharines, Ontario, L2S 0A9, Canada

    Elaina Orlando

  4. Professor of Health Policy and Management, School of Public Wellness, Université de Montréal-CRCHUM & Canada Inquiry Chair in Wellness System Design and Adaptation, 900, Saint Denis Street, Pavillion R, Montreal, Quebec, H2X 0A9, Canada

    Jean-Louis Denis

  5. Départment de Gestion, d'Évaluation et de Politique de Santé, École de santé Publique, Université de Montréal, Centre de recherche du CHUM, Carrefour de 50'innovation et de fifty'évaluation en santé, 850 rue Saint-Denis, Montréal, Quebec, H2X 0A9, Canada

    Marie-Pascale Pomey

Contributions

YB and GRB conceived of the study and participated in its design and coordination. KO and Pb retrieved the records. EO, CF, and Lead 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 assay. SC conducted the quality appraisal. YB drafted the manuscript. YB and GRB revised the manuscript. J-LD and Chiliad-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.

Respective author

Correspondence to Yvonne Bombard.

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Non applicable.

Competing interests

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Additional files

Boosted file 1:

Table S3. PRISMA checklist. (DOC 63 kb)

Additional file 2:

Figure S1. PRISMA diagram. (DOC 57 kb)

Additional file three:

Table S1. Analysis of patient engagement strategies to improve quality of intendance. Identification of facilitators and barriers to patient appointment and subsequent evaluation of patient experiences. (DOCX 160 kb)

Additional file 4:

Table S2. Quality appraisal. Quality appraisal of review articles based on Hawker S, Payne Due south, Kerr C, Hardey Thou, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002;12(9):1284–99. (DOCX 117 kb)

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Bombard, Y., Bakery, Thousand.R., Orlando, E. et al. Engaging patients to improve quality of care: a systematic review. Implementation Sci 13, 98 (2018). https://doi.org/10.1186/s13012-018-0784-z

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Keywords

  • Patient appointment
  • Patient involvement
  • Quality of care
  • Quality improvement
  • Health services
  • Health delivery
  • Systematic review

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