Engaging patients to improve quality of care: a systematic review

Bombard, Yvonne; Baker, G. Ross; Orlando, Elaina; Fancott, Carol; Bhatia, Pooja; Casalino, Selina; Onate, Kanecy; Denis, Jean-Louis; Pomey, Marie-Pascale

doi:10.1186/s13012-018-0784-z

Implementation Science

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

From: Engaging patients to improve quality of care: a systematic review

Study	Country	Intervention	Type of service	Sample size	Level of engagement	Outcomes on quality of care	Impact on institution
Acri et al. 2014 [65]	USA	Community collaboration model	Mental health services	16	Consultative to co-design	Developed and implemented screening, education, and an empowerment intervention for peer-delivered services targeted at improving emotional health of low-income new mothers	Users had an equal voice throughout all aspects of building the intervention, which equalized the power differential
Acri et al. 2014 [65]	USA	Meetings	Mental health services	16	Consultative to co-design
Barnes 2000 [75]	UK	Document analysis interviews questionnaire	Mental health services	Not clear	Co-design	Developed a new program	Achieved a culture change towards valuing users’ knowledge, expertise, contributions, and greater power-sharing
Barnes and Wistow 1994 [40]	UK	User panels	Community mental health and disabilities services	Not discussed	Consultative with some co-design	Identified strategies for user involvement; some evidence of service improvements; developed a “change agenda”	Achieved a culture change via “top-down” approach from local authority
Berg et al. 2015 [50]	Norway	User board	Community HIV/AIDS prevention	7	Co-design	Created a design for an outpatient clinic	Empowerment and autonomy of users through “active citizenship” and a “egalitarian spirit”
Blickem et al. 2013 [92]	UK	Focus groups	Mental health services	8 in interviews	Consultative to co-design	Developed and tested a protocol for PLANS, a community-based referral system	Close engagement of potential users resulted in a grassroots understanding of the support valued by individuals
		Interviews		8 in interviews
		Surveys		6 focus groups (total number not discussed)
Bone et al. 2013 [93]	USA	Community-academic advisory committee	Cancer screening for African Americans	Not discussed	Co-design	Developed a community health worker model to engage African-American communities in cancer screening and care	Identified the community-academic advisory committee as vital to designing the service and ensuring its effectiveness
Brooks 2008 [64]	UK	Focus groups	General health services	52	Co-design	Patient involvement in auditing processes, development of patient questionnaires, policies, and frameworks	Reinforced the importance of patient narratives and knowledge in organization and delivery of health care
		Interviews
		Observations
Buck 2004 [76]	US	Citizen advisory board	General health services (for homeless individuals)	7	Consultative to co-design	Developed informational brochures and recommendations for local interventions and services to improve general health services for the homeless	Achieved collaboration and mutual education
Carlson and Rosenqvist 1990 [51]	Sweden	Consultation meetings	Diabetes care	243	Consultative to co-design	Implementation of care improvement programs and patient information	Identified problems and steps to solve them
		Interviews
		Training course
Cawston 2007 [69]	UK	Focus groups	Primary care	72 in focus groups; 372 via questionnaires	Consultative to co-design	Recommendations and some changes made to improve diabetes management in primary care	Created research-community partnerships in evaluating services but had a modest impact on service change
		Interviews
		Questionnaire
Coad 2008 [41]	UK	Youth Council	Pediatrics—acute care youth services	17	Co-design	Demonstrated impact of youth council on specific areas of improvement	Identified ways of promoting further involvement
Coker et al. 2014 [72]	USA	Community advisory board	Pediatrics	3	Co-design	Developed care models for well-child care	Not discussed
Elwell 2014 [48]	UK	Group meetings	Acute care	Not discussed	Consultative to co-design	Developed and implemented care pathways for cellulitis care in the hospital	User involvement created the desire to change in the organization
Elwell 2014 [48]	UK	Group meetings	Acute care	Not discussed	Consultative to co-design		Aligned user involvement with strategic directions
Ennis et al. 2014 [70]	UK	Focus groups, interviews, service user planning committee, surveys, usability testing	Mental health services	121 users via surveys, unclear number via focus groups, 8 users via usability testing, 4 users via service user planning committee	Consultative to- co-design	Developed electronic personal health record for mental health patients	Not discussed
Enriquez et al. 2010 [67]	USA	Focus groups questionnaires	HIV and intimate partner violence prevention	7 user partners in design; 31 participants in feasibility study	Co-design	Feasibility of new service was established, which improved protective health behaviors, self-esteem, social support, and attitudes towards partner violence	Delivery of intervention was deemed feasible, community-provider partnership was well received and enhanced acceptability of the intervention
Erwin et al. 2016 [71]	USA	Focus groups	Pediatrics—asthma	20	Consultative to co-design	Developed new protocol and tool for patient discharge	Collaborative model enhanced the perception of ED clinicians as partners in asthma control
		Interviews
		Surveys
Factor 2002 [57]	USA	Focus groups	Substance users	29	Co-design	Development of a “survival guide” to improve access to treatment	Created and maintained the participation of users in all aspects of guide development
Ferreira-Pinto 1995 [58]	Mexico	Interviews	Community HIV/AIDS prevention	105	Co-design	Development and implementation of prevention program	Increased self-efficacy and self-esteem of community partners, beyond the program’s outcomes
Ferreira-Pinto 1995 [58]	Mexico	Questionnaires	Community HIV/AIDS prevention	105	Co-design	Development and implementation of prevention program
Fitzgerald 2011 [78]	UK	“Serious game”	Mental health services	25	Consultative to co-design	User re-design of layout and furnishings of a new service unit; design of a medication dispensing system	Achieved flexibility and inclusivity through a game format
Frazier 2007 [42]	USA	School-based program	Mental health services	Not discussed	Co-design	Developed a school-based mental health service program with active engagement of community partners and clinicians	Achieved successful collaboration between community and clinicians on curriculum development
Gibson 2005 [60]	UK	Interviews, questionnaires, workshops	Pediatric oncology	40	Consultative to co-design	Recommendations for structure and processes of service	Not discussed
Godfrey et al. 2013 [73]	UK	Facilitated workshops, focus groups, interviews	Acute care—delirium	3 delirium prevention team members, unspecified interviews	Consultative to co-design	Prevention of Delirium (POD) program	Enhanced culture of caring among staff
Hall 2011 [94]	UK	Interviews, modeling exercise	Cancer	18	Consultative to co-design	Developed a model for shared care of secondary cancer follow-up with general practitioners supported by specialists	Involved service users and deliverers’ experiences in a modeling exercise
Higgins et al. 2016 [95]	Ireland	Action research group, focus groups, peer facilitator, steering committee	Mental health services	30 users via focus groups, 21 family members via focus groups	Consultative to co-design	Developed a peer and clinician-led education program	Not discussed
Hopkins and Neimiec 2006 [52]	UK	Interviews questionnaires	Home treatment services	70	Co-design	Service improvement survey	Shared and neutralized power to increase inclusiveness through user participation in process
Iedema et al. 2010 [39]	Australia	Interviews	Emergency health services	40	Co-design	Recommendations for improving processes and facilities in the ED	Created a deliberative space for patients, clinicians, and staff to discuss personal experiences and design processes to ameliorate issues. Process developed new competencies and skills among participants
Jones et al. 2008 [62]	UK	Focus groups, interviews, workgroups	Stroke services	92	Consultative to co-design	Information package for patients, recommendations for improvements to rehabilitation program; prioritization of health care issues for stroke patients and development of services	Achieved meaningful user participation in service development through external facilitation
Jones 2010 [96]	USA	Advisory meetings interviews,user testing	Smoking cessation for deaf individuals	10	Consultative to co-design	Developed and tested an Internet-based smoking cessation intervention for deaf individuals in consultation with members of the deaf community	Involved service users in all phases of development and testing
Lofters et al. 2015 [43]	Canada	Community advisory group, community workshops, concept mapping, interviews	Cancer screening	24 via concept mapping	Consultative to co-design	Developed a culturally appropriate cancer screening program for South Asian community delivered via community organizations	Increased capacity to implement evidence-based interventions
Lord et al. 1994 [63]	Canada	Document analysis, consultation feetings, focus groups, questionnaire	Mental health services	Not discussed	Co-design	Improved services	Achieved organizational culture change and patient representation on board by broadening power and control through stakeholder involvement
Macdonnell et al. 2013 [45]	Canada	Brainstorming, facilitated discussions	Pediatrics—neonatal intensive care	3	Co-design	Developed a family integrated care program	Built positive relationships between users and staff
MacNeill 2009 [97]	UK	Interviews, observations	Pediatrics	29	Consultative to co-design	New model of participation to improve patient-staff relationship and patient understanding of program	Greater involvement of users through democratic process of participation, though users adopted a passive role
Mendenhall et al. 2010 [77]	USA	Collaborative educational program	Diabetes	52	Consultative to Co-design	Collaborative design of a “Family Education Diabetes Series” program, which demonstrated improved outcomes	Achieved collaboration between elders and providers in design and implementation of program through use of talking circles, storytelling, dance, shared meals, and active role in intervention
Murphy et al. 2015 [44]	Ireland	Quality improvement working teams	Mental health services	10	Co-design	Enhanced experiences of care for users referred to community mental health services	Acknowledgement that user/family involvement needs to go beyond involvement to true co-production exercises perceived as meaningful by all participating stakeholders
Owens 2011 [56]	UK	Workshops	Mental health services	12	Co-design	Developed a text-based intervention for patients who self-harm	Involved users in the design process, which changed the nature of the intervention dramatically
Pilgrim and Waldron 1998 [59]	UK	Consultation meetings, observations	Mental health services	14	Co-design	Improved service: extended opening hours, employed a mental health advocate, published an information booklet	Achieved direct negotiations for change between users and professionals
Reeve et al. 2015 [74]	Australia	Focus groups, workshops	Primary care	6	Co-design	Generated new delineation of roles and responsibilities between an Aboriginal community-controlled health service and local Australian health service	Trusting relationship between community and providers as a result of extensive community consultation
Rose 2003 [98]	UK	Questionnaire	Mental health services	221	Consultative to co-design	Improved coordination of care generally linked to improved user satisfaction	Very few users were involved or aware of the new coordination process
Swarbrick et al. 2006 [55]	USA	Group meetings	Mental health services	Not discussed	Co-design	Implementation of the Recovery Network Program, a user-led wellness and recovery training project	Established a collaborative partnership between peer education and hospital staff via user training
Thomson et al. 2015 [68]	UK	“Future” groups	Multiple sclerosis	5	Co-design	Reconceptualized service for outpatients	Created a positive working environment with mutual respect and in equal partnership
Todd et al. 2000 [47]	UK	Interviews	Intellectual disability services	Not discussed	Co-design	Influenced implementation of service strategy	Achieved a shift in thinking, collaboration and consumer participation in planning
Tollyfield 2014 [53]	UK	Co-design meetings	Acute care—critical care	19	Co-design	Multiple in-unit quality improvement initiatives	Staff reconnected core values of caring and compassion
Tooke 2013 [49]	UK	Service user review panels	Dementia	14	Consultative to co-design	Development of organizational priorities and processes for patients with dementia, development of evaluation tools	Enhanced understanding of effective ways for staff to communicate with users
Van Staa et al. 2010 [66]	Netherlands	Interviews at a disco party	Acute care for chronically ill patients	34	Co-design to consultative	Recommendations for engaging youth in design and evaluation of health services	Involving users was feasible and appreciated by users but did not improve quality
Walsh and Hostick 2005 [99]	UK	Questionnaire	Mental health services	10	Consultative to co-design	Improved care facility, development of service strategy, and care guide	Achieved user ownership through external facilitation
Weinstein 2006 [46]	UK	Document analysis, meetings, questionnaire	Mental health services	72	Consultative to co-design	Plan to improve service delivery	Top-down approach of the first case resulted in less user ownership, whereas the collaborative, user-led approach of the second case led to the new approach to seeking users’ views and achieved higher response
Wistow and Barnes 1993 [61]	UK	Consultation meetings, patient council, questionnaire	Mental health and disability services	Not discussed	Co-design	Improved access to services: commitment to address issue, employment support unit created	Increased users’ voice in their care, which improved the sensitivity of services to individual needs and information about services
Xie et al. 2015 [54]	USA	Interviews, meetings	Acute care	1 parent, 14 stakeholders	Co-design	Developed checklist for family-centered rounds	Created buy-in for the family-centered rounds process and need for mutual understanding

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