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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 involvementAuthorArticle typeLocationDescription of Patient EngagementReported Effectiveness of Patient Engagement InterventionBasis of EvidenceQuality Score (MMAT maximum score 4/4)
Community Advisory CouncilZittleman 2009; Bender 2011; Norman, 2013; Deaullme 2015Quasi-experimental community awareness campaignUSCommunity 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 interventionZittleman: 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, 2005Qualitative StudyUKAverage 75% cancer patients and 25% caregivers per group, usually meeting every 2 monthsFocus 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 servicesTelephone interviews with 27 patients from 34 cancer networks; site-based interviews with patients and staff at 6 sitesQualitative 4/4
Patient Advisory CouncilBowen, 2004Qualitative StudyAustralia/NZ"Consumer reference group" of 8-10 breast cancer patients meeting 4 times per yearSocial connections and communication skills for patient committee membersInterviews with 9 members and staffQualitative 3/4
Patient Advisory CouncilKendell, 2014Qualitative StudyCanada15 membersInput 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 CouncilPerreault, 2010Case StudyCanada8-12 outpatient psychiatric patients and 4 staff members meeting 3-4 times per yearMental health benefit for committee members, improved provider/staff awareness of patient experience, reduction of mental health stigmaReview of meeting agendas and projects, Group evaluation from panel membersQualitative 4/4
Patient Advisory CouncilMcTavish, 2014Case StudyCanadaPatient and Family Advisory Council (makeup not described) and 55 Patient experience advisors throughout the organizationAltered 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 practiceCase-based description, Inpatient pre- and post- evaluation survey for patients (N=624) and staff (398)Quantitative descriptive 1/4
Patient Advisory CouncilRich, 2014Case StudyUS18 members aged 12-19 at an academic children's hospital, meeting once per month, 11 months per yearIndividual empowerment and advocacy skills, clinic culture, physical space, patient education toolsCase-based examples of projectsN/A; case study without formal evaluation
Patient Advisory CouncilLoud, 2013Case StudyUK6 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 callsPatient and staff educational materials to support chronic kidney disease self-managementInformal evaluationN/A; case study without formal evaluation
Patient Advisory CouncilWhite, 2012Case StudyUS11 patient and family councils across different specialties/services; Executive Council of 8 patient advisors who sit on system-wide committees; serve 1-2 year termsChange to clinic physical space, improved discharge process, improved scheduling, patient education materials, customer service training for staff, patient welcome video, improved billing statementsCase-based examples of projectsN/A; case study without formal evaluation
Patient Advisory CouncilPonte, 2003Case StudyUS1 adult and 1 pediatric oncology patient advisory councilAccess (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 fellowsCase-based examples of projectsN/A; case study without formal evaluation
Patient Advisory CouncilMeyers, 2008Case Study
(Grey literature)
USMultiple sites described, one example: 60 to 70 advisors serving on more than 25 operational committees, including patient safety, education, ethics, grievance and hospital aestheticsPotential 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 researchCase study/Press releaseN/A; case study without formal evaluation
Patient Advisory CouncilGreenwood, 2003Case Study
(Grey literature)
UK70 patients invited to provide feedback who had previously submitted complaintsReduced 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 patientsCase study/Press releaseN/A; case study without formal evaluation
Ad-hoc Patient CommitteeBoivin, 2014Cluster Randomized Controlled TrialCanada83 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 SESHealthcare services priority setting for improving chronic disease management in primary carePriorities 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 CommitteeForbat, 2009Qualitative quasi-experimental study of QI intervention with control groupUK3 lung cancer services worked with 10 patients and 3 family members on QI projects; 2 sites did not work w patient and were controlsExpansion of understanding of system-level patient involvement in intervention group compared to control; Improved relationship between patients and staff in intervention groupPre- and Post-intervention focus groups with thematic analysisQualitative 2/4
Ad-hoc Patient CommitteeFudge, 2008Qualitative Study/ Program EvaluationUKUser 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 groupsUsers 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 survivorsDirect observation, semi-structured interviews and documentary sourcesQualitative 4/4
Ad-hoc Patient CommitteeAnderson, 2006Qualitative StudyUK23 local residents interviewed; unclear total number involved in planning/design of Health Park and Health CenterCommittee members contributed to planning new physical space, event publicity, individual empowerment, engagement of community members with governmental leadershipIndividual interviews and focus groupsQualitative 4/4
Ad-hoc Patient CommitteeRobert, 2003Qualitative StudyUKMental Health quality improvement collaborative across 37 NHS sites; involved at least one service user per siteEducational materials, patient record keeping, physical space (ward maps, photo boards), identified projects for PDSA cyclesSemi-structured interviews at 6 randomly selected case sitesQualitative 4/4
Ad-hoc Patient CommitteeInnes, 2003Case StudyAustralia/NZ10 consumers reflecting diversity of residential area, ethnicity, age and breast disease status; meeting quarterlyPatient held record, newsletter, service reviews, participation in other breast cancer care committees, stronger relationships between committee members and staffFocus group with consumer reference group and semi-structured interviews with senior executivesQualitative 3/4
Ad-hoc Patient CommitteeCarney, 2006Case StudyUK22 colorectal cancer patients (12 male; median age, 72 years, range, 40–86 years) who met three timesCreated educational bookletCase-based description of projectN/A; case study without formal evaluation
Ad-hoc Patient CommitteeRipley, 2007Case StudyUKSeven patient "users" with personal cancer historyLed familial cancer awareness presentations, contributed to educational leaflet, individual patient empowerment/social networkingTally of monthly referrals to cancer screening service with qualitative increases after promotion monthsN/A; case study without formal evaluation
Experience-based co-designPiper, 2012Qualitative Study/ Program EvaluationAustralia/NZ169 patients/carers interviewed; 126 patients surveyed; in multiphase program involving staff across seven emergency departments totalPhysical space, patient education materials, work flow changes to improve patient transfers/care coordinationCase-based description of projects and thematic analysis of interviewsQualitative 3/4
Experience-based co-designTsianakas, 2011Case StudyUK23 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 patientsAltered 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 appointmentsInterviews, ethnographic fieldwork, interviews with participants after the projectQualitative 3/4
Experience-based co-designBoyd, 2012Case StudyAustralia/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 communicationCase-based description of projectQualitative 3/4
Experience-based co-designGustavsson, 2014Case StudySwedenNew mothers and their partners (3 mothers, 2 fathers) collaborated with neonatal healthcare staff; patient and staff had focus groupsRecommendations for improving physical space and amenities (improved beds, meal service, alarm system), staff training, and communicationCase-based description of projectN/A; case description without formal evaluation
OtherMockford, 2012Systematic reviewUKResults 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 people20 case studies, 5 evaluations, 1 survey, 2 secondary data analysis; none with measurement of impact of activitiesQuantitative descriptive: 4/4
OtherCrawford, 2003Cross-sectional SurveyUK75 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 members65% 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 surveyQuantitative descriptive 4/4
OtherSweeney, 2005Qualitative Study/ Program EvaluationUK24 staff and 4 patients interviewed about project involving 4 hospital trustsImproved communication with patients, enhanced staff attitude toward patient perspective, staff training, changes to clinical processes (such as discharge), involved patients felt "heard"Individual interviewsQualitative 4/4
OtherChallan, 2006Case StudyUKClinical Audit (similar to QI) Patient Panel for a Primary Care Trust; 11 membersPanel 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 staffCase-based examples of projectsN/A; case study without formal evaluation
OtherMurie, 2004Case StudyUKPublic 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 professionalsAccess (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 serviceCase-based examples of projectsN/A; case study without formal evaluation