Background
Methods
Identification of data sources
(((Patient OR patients OR consumer OR consumers OR community OR communities) AND (“patient participation”[mh] OR “consumer participation”[mh] OR “patient engagement” OR “consumer engagement” OR “patient participation” OR “consumer participation” OR “consumer involvement” OR “patient involvement”)) |
OR |
(“Advisory committees”[mh] OR “Governing board”[mh])) OR (“patient advisory council” OR “patient advisory committee” OR “patient and family advisory council” OR “consumer advisory council” OR “patient advisory committee” OR “consumer advisory boards” OR “Community advisory board” OR “Community advisory council” OR “Community advisory committee” OR “Community advisory boards” OR “Community advisory council”) |
AND |
(“Patient Harm”[Mesh] OR “Patient Safety”[Mesh] OR “Quality of Health Care”[Mesh] OR “Patient Satisfaction”[mh] OR “patient safety” OR “quality of care” OR “clinical outcomes” OR “patient experience” OR “patient satisfaction” OR “consumer satisfaction” OR “Community health planning” OR “population health” OR “Health Care Costs”[Mesh] OR “cost of care” OR “health care costs” OR “Health Priorities/organization and administration”[mh] OR “health care priority”[Tiab] OR “health care priorities”[Tiab] OR “healthcare priority”[Tiab] OR “healthcare priorities”[Tiab] OR “health priority”[Tiab] OR “health priorities”[Tiab] “Quality Improvement/organization and administration”[mh]) |
Study selection
Inclusion Criteria | Exclusion Criteria |
---|---|
Published between November 2002–August 2015 | Published before November 2002 or after August 2015 |
English language | Non-English publication |
Healthcare-focused; including but not limited to inpatient and outpatient, primary care, ambulatory sub-specialty, and emergency department | Study not located in a healthcare setting |
Involves patient input on an advisory council, board, or committee | Did not involve patient input via a council, board or committee |
Reports measure of patient engagement impact either for primary outcomes: clinical outcome measure or an NQMC safety or patient satisfaction measure for staff or patients; or secondary outcomes: other impacts on clinic processes, priorities, physical space or impacts on clinic staff or patient advisors themselves | Description of a patient engagement intervention that does not address primary or secondary outcomes. |
Patient engagement activities described address organization/system-level changes | Exclusively addresses engagement in individual care such as shared decision making or patient activation processes; or involved patient engagement within a research protocol without patient engagement pertaining to the intervention itself |
Is a research study or case report that includes assessment of patient engagement impact | Is a perspective, policy piece, or protocol. |
Data extraction
Analysis
Results
Type of Patient Involvement | N |
---|---|
Patient Advisory Council | 11 |
Community Advisory Council | 4 |
Ad-hoc Patient Committee | 8 |
Experience-based co-design | 4 |
Other | 5 |
Article Type | |
Randomized Controlled Trial | 1 |
Quasi-Experimental Study | 4 |
Systematic Review | 1 |
Cross-Sectional Survey | 1 |
Qualitative Study | 9 |
Case Study | 16 |
Location | |
UK | 15 |
US | 8 |
Australia/NZ | 4 |
Canada | 4 |
Other (Sweden) | 1 |
All Articles | 32 |
Type of patient involvement | Author | Article type | Location | Description of Patient Engagement | Reported Effectiveness of Patient Engagement Intervention | Basis of Evidence | Quality Score (MMAT maximum score 4/4) |
---|---|---|---|---|---|---|---|
Community Advisory Council | Zittleman 2009; Bender 2011; Norman, 2013; Deaullme 2015 | Quasi-experimental community awareness campaign | US | Community Advisory Council (17 members) of local farmers, ranchers, schoolteachers, students. Combination of in-person meetings, teleconferences, emails to review clinical guideline and plan "translation" to community. Also community focus groups and town halls. | Increased exposure to community message associated with increased intention to receive CRC screening. Increased use of controller inhalers, asthma action plans and spirometry in pre-post analysis. Improved blood pressure control. | Varied by study; pre- post- analysis comparing those exposed vs. non-exposed to the community intervention | Zittleman: Quantitative RCT 3/4; Bender: Quantitative non-randomized 4/4; Norman (N/A review paper); Deaullme: Quantitative nonrandomized 2/4 |
Patient Advisory Council (called Cancer Partnership Groups) | Richardson, 2005 | Qualitative Study | UK | Average 75% cancer patients and 25% caregivers per group, usually meeting every 2 months | Focus group for new cancer center; networking with community groups; developing leaflets and "breaking bad news" training for providers; advocacy to improve support and access for cancer services | Telephone interviews with 27 patients from 34 cancer networks; site-based interviews with patients and staff at 6 sites | Qualitative 4/4 |
Patient Advisory Council | Bowen, 2004 | Qualitative Study | Australia/NZ | "Consumer reference group" of 8-10 breast cancer patients meeting 4 times per year | Social connections and communication skills for patient committee members | Interviews with 9 members and staff | Qualitative 3/4 |
Patient Advisory Council | Kendell, 2014 | Qualitative Study | Canada | 15 members | Input on decisions but members unable to provide examples; Social connections for patient committee members, personal benefit of "feeling heard" | Semi-structured key informant interviews with patients, staff and community members (n=5) | N/A; did not pass screening criteria due to limited sample size |
Patient Advisory Council | Perreault, 2010 | Case Study | Canada | 8-12 outpatient psychiatric patients and 4 staff members meeting 3-4 times per year | Mental health benefit for committee members, improved provider/staff awareness of patient experience, reduction of mental health stigma | Review of meeting agendas and projects, Group evaluation from panel members | Qualitative 4/4 |
Patient Advisory Council | McTavish, 2014 | Case Study | Canada | Patient and Family Advisory Council (makeup not described) and 55 Patient experience advisors throughout the organization | Altered visiting hours, inclusion of patients on hospital committees, Discharge information, improved staff satisfaction, stable patient satisfaction, and tailoring services to patient needs. Trending although non-statistical increase in patient report "I have been listened to by healthcare team" and staff agreeing with having a collaborative practice | Case-based description, Inpatient pre- and post- evaluation survey for patients (N=624) and staff (398) | Quantitative descriptive 1/4 |
Patient Advisory Council | Rich, 2014 | Case Study | US | 18 members aged 12-19 at an academic children's hospital, meeting once per month, 11 months per year | Individual empowerment and advocacy skills, clinic culture, physical space, patient education tools | Case-based examples of projects | N/A; case study without formal evaluation |
Patient Advisory Council | Loud, 2013 | Case Study | UK | 6 members with experience of long-term conditions, including CKD, diabetes, heart disease and kidney cancer; meeting 2-3 times per year as well as email and calls | Patient and staff educational materials to support chronic kidney disease self-management | Informal evaluation | N/A; case study without formal evaluation |
Patient Advisory Council | White, 2012 | Case Study | US | 11 patient and family councils across different specialties/services; Executive Council of 8 patient advisors who sit on system-wide committees; serve 1-2 year terms | Change to clinic physical space, improved discharge process, improved scheduling, patient education materials, customer service training for staff, patient welcome video, improved billing statements | Case-based examples of projects | N/A; case study without formal evaluation |
Patient Advisory Council | Ponte, 2003 | Case Study | US | 1 adult and 1 pediatric oncology patient advisory council | Access (e.g., an emergency department "fast track"), design of new physical space and plans for transferring patients to new space, new education program for first year oncology fellows | Case-based examples of projects | N/A; case study without formal evaluation |
Patient Advisory Council | Meyers, 2008 | Case Study (Grey literature) | US | Multiple sites described, one example: 60 to 70 advisors serving on more than 25 operational committees, including patient safety, education, ethics, grievance and hospital aesthetics | Potential reduction in falls and reduced error. Another site reports increased patient satisfaction (10 to 99th percentile), decreased length of stay (by 50%), increased discharge volume (by 15.5%), decreased medical errors (by 62%), and decreased staff vacancy (from 7 to 0%). Third site reported web portal development, physical improvements, patient-centered rounds, training medical students, input on research | Case study/Press release | N/A; case study without formal evaluation |
Patient Advisory Council | Greenwood, 2003 | Case Study (Grey literature) | UK | 70 patients invited to provide feedback who had previously submitted complaints | Reduced patient complaints: informal complaints fell from 117 in 2 month period to 48 one year later; physical improvements: large-size x-ray gowns, higher chairs, less obtrusive bags for collecting belongings of deceased patients | Case study/Press release | N/A; case study without formal evaluation |
Ad-hoc Patient Committee | Boivin, 2014 | Cluster Randomized Controlled Trial | Canada | 83 patients surveyed for input on primary care priorities; 17 patients worked with staff in 2 day deliberation session; patients sampled for age, gender, health status and SES | Healthcare services priority setting for improving chronic disease management in primary care | Priorities set with patient involvement in intervention arm were more aligned with PCMH and chronic care model (p<0.01) | Quantitative randomized 4/4 |
Ad-hoc Patient Committee | Forbat, 2009 | Qualitative quasi-experimental study of QI intervention with control group | UK | 3 lung cancer services worked with 10 patients and 3 family members on QI projects; 2 sites did not work w patient and were controls | Expansion of understanding of system-level patient involvement in intervention group compared to control; Improved relationship between patients and staff in intervention group | Pre- and Post-intervention focus groups with thematic analysis | Qualitative 2/4 |
Ad-hoc Patient Committee | Fudge, 2008 | Qualitative Study/ Program Evaluation | UK | User involvement within a stroke care initiative in 2 boroughs over 2 years; included town-hall style forum to gather user input as well as ongoing working groups | Users provided input on questionnaire design, training materials for staff, educational materials including DVD for patients; trained to give peer support and raise community awareness. Users reported feeling listened to by staff and improved social relationships with other stroke survivors | Direct observation, semi-structured interviews and documentary sources | Qualitative 4/4 |
Ad-hoc Patient Committee | Anderson, 2006 | Qualitative Study | UK | 23 local residents interviewed; unclear total number involved in planning/design of Health Park and Health Center | Committee members contributed to planning new physical space, event publicity, individual empowerment, engagement of community members with governmental leadership | Individual interviews and focus groups | Qualitative 4/4 |
Ad-hoc Patient Committee | Robert, 2003 | Qualitative Study | UK | Mental Health quality improvement collaborative across 37 NHS sites; involved at least one service user per site | Educational materials, patient record keeping, physical space (ward maps, photo boards), identified projects for PDSA cycles | Semi-structured interviews at 6 randomly selected case sites | Qualitative 4/4 |
Ad-hoc Patient Committee | Innes, 2003 | Case Study | Australia/NZ | 10 consumers reflecting diversity of residential area, ethnicity, age and breast disease status; meeting quarterly | Patient held record, newsletter, service reviews, participation in other breast cancer care committees, stronger relationships between committee members and staff | Focus group with consumer reference group and semi-structured interviews with senior executives | Qualitative 3/4 |
Ad-hoc Patient Committee | Carney, 2006 | Case Study | UK | 22 colorectal cancer patients (12 male; median age, 72 years, range, 40–86 years) who met three times | Created educational booklet | Case-based description of project | N/A; case study without formal evaluation |
Ad-hoc Patient Committee | Ripley, 2007 | Case Study | UK | Seven patient "users" with personal cancer history | Led familial cancer awareness presentations, contributed to educational leaflet, individual patient empowerment/social networking | Tally of monthly referrals to cancer screening service with qualitative increases after promotion months | N/A; case study without formal evaluation |
Experience-based co-design | Piper, 2012 | Qualitative Study/ Program Evaluation | Australia/NZ | 169 patients/carers interviewed; 126 patients surveyed; in multiphase program involving staff across seven emergency departments total | Physical space, patient education materials, work flow changes to improve patient transfers/care coordination | Case-based description of projects and thematic analysis of interviews | Qualitative 3/4 |
Experience-based co-design | Tsianakas, 2011 | Case Study | UK | 23 breast and 13 lung cancer patients provided unstructured interviews that were filmed and edited to highlight areas for improvement. 37 breast and 26 lung cancer staff also interviewed. Staff/patient working groups then implemented changes based on data; unclear # of patients | Altered workflows to be more patient-centered; improved privacy in clinic spaces, improved appointment and scheduling access; improved patient education and group support; training for staff/trainees; decreased wait time for lab tests and appointments | Interviews, ethnographic fieldwork, interviews with participants after the project | Qualitative 3/4 |
Experience-based co-design | Boyd, 2012 | Case Study | Australia/NZ | "Journey mapping" workshop of patients and their supporters (14), staff (5) and workshop organizers (2). 182 Experience-based survey completed (97 from breast clinic, 85 from mammography/ ultrasound) | Educational materials, patient record keeping systems, mammography gown design, patient-provider communication | Case-based description of project | Qualitative 3/4 |
Experience-based co-design | Gustavsson, 2014 | Case Study | Sweden | New mothers and their partners (3 mothers, 2 fathers) collaborated with neonatal healthcare staff; patient and staff had focus groups | Recommendations for improving physical space and amenities (improved beds, meal service, alarm system), staff training, and communication | Case-based description of project | N/A; case description without formal evaluation |
Other | Mockford, 2012 | Systematic review | UK | Results included 28 studies describing patient involvement via NHS board membership, primary care boards and trusts. | Improved relationships between patients and health professionals, changes to physical space, educational materials, better awareness of healthcare services among some people | 20 case studies, 5 evaluations, 1 survey, 2 secondary data analysis; none with measurement of impact of activities | Quantitative descriptive: 4/4 |
Other | Crawford, 2003 | Cross-sectional Survey | UK | 75 Mental health user groups from 17 trusts. User groups ranged from five to over 200 members (median 35); median levels of meeting attendance at meetings between 10-15 members | 65% of trusts listed impacts including improvements to ward environments, organization of outpatient services and systems for supporting patients in crisis. Eight (47%) trusts reported user participation in planning meetings influenced service development and policies. Only 6/25 user groups reported being satisfied with user involvement. | User self-report in survey | Quantitative descriptive 4/4 |
Other | Sweeney, 2005 | Qualitative Study/ Program Evaluation | UK | 24 staff and 4 patients interviewed about project involving 4 hospital trusts | Improved communication with patients, enhanced staff attitude toward patient perspective, staff training, changes to clinical processes (such as discharge), involved patients felt "heard" | Individual interviews | Qualitative 4/4 |
Other | Challan, 2006 | Case Study | UK | Clinical Audit (similar to QI) Patient Panel for a Primary Care Trust; 11 members | Panel conducted audit of pulmonary services and made recommendations; repeat audit 1 year later found improvements in: Access (Drop-in clinics offered and improved specialty referrals), patient self management information and support, education for staff | Case-based examples of projects | N/A; case study without formal evaluation |
Other | Murie, 2004 | Case Study | UK | Public health walk (670 people); 60 of which formed a community forum. Separate Patient Participation Group (started with 36 patients, decreased to 7 in 2 years) meeting monthly; mostly older retired professionals | Access (e.g., evening care, mental health teams), patient-held record card, new services (e.g., smoking cessation clinics, cardiac rehabilitation), co-located pharmacy, links to community transportation service | Case-based examples of projects | N/A; case study without formal evaluation |