Internet Citation: Engaging Patients and Families in Their Health Care. Content last reviewed October 2022. Agency for Healthcare Research and Quality, Rockville, MD.
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From: Engaging patients to improve quality of care: a systematic review
| 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 |
| Meetings | |||||||
| 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 | |||||||
| 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 |
| 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 |
| Questionnaires | |||||||
| 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 |