Table 4 Summary of Studies Included in Systematic Review
From: The impact of patient advisors on healthcare outcomes: a systematic review
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 |