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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